Chapter II - Shodhgangashodhganga.inflibnet.ac.in/bitstream/10603/2345/10/10...Chapter- II Review of Literature 25 GBD-Global Burden of Disease Fig 4 & 5: Total YLD rates, by sex,

Chapter II

Review of Literature

Chapter- II Review of Literature

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REVIEW OF LITERATURE

Most of us think of “health care” as services provided by medical professionals

(e.g., physicians and nurses) in hospitals, doctor’s offices, and nursing homes.

However, for individuals whose medical conditions or injuries have resulted in chronic

illness or disability, the foundation of health care is access to help with daily living

tasks, such as eating, bathing, leaving their homes to go to the doctor or other places

of worship. In most instances, this type of assistance can be provided by family

members, friends, and neighbors because it involves helping others perform ordinary

everyday activities.

Dementia is an extremely common condition among the elderly. Over 100

epidemiological surveys have now been published from many countries (Ineichen

1998). Methodological differences make comparisons difficult, although several meta-

studies described below provide baseline material for developed countries. An

integrative analysis of 47 surveys across 17 countries has suggested approximate

rates less than 1% for dementia from any cause in persons aged 60 to 69 years,

rising to about 39% in persons 90 to 95 years old (Henderson 1998). The prevalence

doubles with every five years of age within that range, with few differences taking into

account secular changes, age, gender, place of living and so on.

The incidence and prevalence of dementia increase sharply with advancing

age. No difference is noted in overall age-adjusted incidence rates by gender.

Rochester studies provide the only 25-year time trend analyses of the incidence of

dementia in the United States. Time trends over three prevalence dates indicate an

increase in prevalence in this community (Kokmen et al 1996). Incidence rates of

Alzheimer disease (AD) were higher in women than in men in several recent

European and Asian studies. Cohort studies in the United States, on the other hand,

have consistently reported no difference in incidence across sex. Cases were

ascertained through the medical records linkage system of the Rochester

Epidemiology Project, which encompasses the records of all medical care providers

(including outpatient clinics, hospitals, general practitioners, and nursing homes) in


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Rochester. For both dementia and AD, incidence rates increased steeply with age,

and there were no consistent differences between men and women (Edland et al

2002).

Table 3: Dementia: YLD, YLL and DALY estimates for WHO epidemiological sub-regions, 2000

YLD-Years Lived with Disability; YLL- Years Life Lost; DALY-Disability

Adjusted Life Years


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GBD-Global Burden of Disease

Fig 4 & 5: Total YLD rates, by sex, broad regions, 1990 and 2000 Total YLD rates, by sex, broad regions, 1990 and 2000

Developing countries Demographic ageing is proceeding rapidly in China,

India and Latin America. The number of older people in developing countries will

have increased by 200% as compared to 68% in the developed countries in the 30


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years up to 2020. In the developing world there is much more uncertainty regarding

frequency of dementia, with few studies and widely varying estimates (10/66

dementia group 2000).

Coverage is good in Europe and North America, patchy in south and South

East Asia, and very limited in Africa, the Middle East, Russia and eastern Europe and

Latin America. The 10/66 Dementia Research Group has been working with ADI to

extend the evidence base on the prevalence and incidence of dementia, with field

surveys in Cuba, Brazil, Dominican Republic, Venezuela, Mexico, Argentina, Peru,

India and China. New prevalence estimates were published in 2008; these suggested

that the criteria used in previous studies may have led to underestimating of the

prevalence and numbers of people with dementia in the least developed regions

(Rodrigues et al 2008).

As the current study is aimed at developing information management system

for the informal care givers of persons with dementia, literature review would include

studies related to psychosocial characteristics of care givers and decision support

systems related to mental health.

There could be an ocean of research in this area. Hence, only those aspects

those are closely related and within the purview of the study have been included.

Even though the review is comprehensive, it is not necessarily exhaustive.

The current chapter has been dealt with under following areas with respect to

informal care givers of persons with dementia:

1. Studies related to Prevalence of Dementia.

2. Studies related to Psychosocial aspects related to informal Care giving for

persons with dementia

3. Studies related to Health conditions of Care givers

4. Studies related to Strain experienced by the Care givers

5. Studies related to Burden and Depression experienced by the

6. Studies related to Care giver & their Attitude towards their wards.


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7. Studies related to Behavioural & Psychological symptoms shown by the

persons with dementia and the distress experienced by the Care givers

8. Studies related to Burnout & Caregiving

9. Studies related to Coping Strategies in Care giving roles

10. Studies related to Social Support and their influence on Care giving in Informal

Care givers and Interventions

11. Overview of Caregivers intervention research

12. Studies related to Health Information / Decision Support Systems in the field of

Mental Health

1. Studies related to Prevalence of Dementia

Dementia is an extremely common condition among the elderly. Over 100

epidemiological surveys have now been published from many countries (Ineichen

1998). Methodological differences make comparisons difficult, although several meta-

studies described below provide baseline material for developed countries. An

integrative analysis of 47 surveys across 17 countries has suggested approximate

rates under 1% for dementia from any cause in persons aged 60 to 69 years, rising to

about 39% in persons 90 to 95 years old (Henderson 1998). The prevalence doubles

with every five years of age within that range, with few differences taking into account

secular changes, age, gender, place of living. The prevalence of dementia in subjects

65 years and older in North America is approximately 6%- 10%, with Alzheimer's

disease accounting for two-thirds of these cases. If milder cases are included, the

prevalence rates double.

Alzheimer's disease (AD) has become nearly twice as prevalent as vascular

dementia (VaD) in Korea, Japan, and China since transition in early 1990s (Suh

&Shah 2001). In the 1980s, VaD was more prevalent than AD in these countries. In

Nigeria, the prevalence of dementia was low. Indian studies were contradictory, with

both AD and VaD being more prevalent in different studies. American and European

studies consistently reported AD to be more prevalent than VaD. There have now

been four age-specific prevalence meta-analyses. Jorm et al. (1987) used data from

22 studies from throughout the world and found a consistent trend for prevalence to


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double with every 5.1 years of age. The exponential rise was somewhat steeper for

Alzheimer’s disease (doubling every 4.5 years of age) than for vascular dementia

(doubling every 5.3 years of age). Hofman et al. (1991) pooled data from 12

European studies carried out between 1980 and 1990. This meta-analysis differed

from the one by Jorm et al. in that it excluded non-European and older studies.

The third meta-analysis, Ritchie et al (1992), used data from the 3 studies

which had been carried out since 1980 and which used DSM-III diagnostic criteria for

dementia. By restricting the studies to those which used the same diagnostic criteria,

the authors found much less variability in the prevalence rates in the upper age

ranges than had the other two meta-analyses. However, the number of studies

included was only small. The estimated prevalence rates from Ritchie et al (1992) are

in table 4.

Table 4: Prevalence rates of dementia from 3 age-specific prevalence meta-analyses

Global prevalence of dementia: a Delphi consensus study

100 years after the first description, Alzheimer's disease is one of the most

disabling and burdensome health conditions worldwide. The Delphi consensus

method was used to determine dementia prevalence for each world region.


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A global survey by Cleusa P Ferri et al., (2005) shows (fig.2) the extent of the

global research evidence on the prevalence of dementia. 12 international experts

were provided with a systematic review of published studies on dementia and were

asked to provide prevalence estimates for every WHO world region, for men and

women combined, in 5-year age bands from 60 to 84 years, and for those aged 85

years and older. UN population estimates and projections were used to estimate

numbers of people with dementia in 2001, 2020, and 2040. We estimated incidence

rates from prevalence, remission, and mortality.

Findings: Evidence from well-planned, representative epidemiological surveys is

scarce in many regions. The estimate that 24.3 million people have dementia today,

with 4.6 million new cases of dementia every year (one new case every 7 seconds).

The numbers of people affected will double every 20 years to 81.1 million by 2040.

Most people with dementia live in developing countries (60% in 2001, rising to 71%

by 2040). Rates of increase are not uniform; numbers in developed countries are

forecast to increase by 100% between 2001 and 2040, but by more than 300% in

India, China, and their south Asian and western Pacific neighbours.

Interpretation: The study believes that the detailed estimates in this work constitute

the best currently available basis for policymaking, planning, and allocation of health

and welfare resources.

The world regions coloured in red (North America, Europe, Japan, and

Australia) are well covered with several studies of good methodological quality. Some

epidemiological studies have been done in the regions coloured in pink, but they are

insufficient in quality or quantity to provide representative estimates of the regional

prevalence of dementia. Regions marked in white are completely or almost

completely lacking in epidemiological studies; in these regions sites of single studies

are marked with a red dot.


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Fig 6: Prevalence studies worldwide

Prevalence Phase (2003- 2007)

The evidence base on the prevalence of dementia was patchy in many world

regions, hampering previous estimates of the global burden of the disease. (Wimo et

al 2004, Ferri et al 2005) the 10/66 Dementia Research Group has now completed

population-based surveys (2003-2007) of dementia impact in 12 sites in eight low

and middle income countries (India, China, Cuba, Dominican Republic, Brazil,

Venezuela, Mexico and Peru). (Prince M et al; Jacob et al 2007, Llibre R et al;

Scazufca M et al; Acosta et al 2008). Further surveys are underway in Argentina,

Puerto Rico, Nigeria, and South Africa. Cross-sectional comprehensive one phase

surveys have been conducted of all residents aged 65 and over of geographically

defined catchment areas in each site with a sample size of 2000 in each country. The

net result will be unique resource of directly comparable data on over 20,000 older

adults from three continents. All studies use the same cross-culturally validated

assessments (dementia diagnosis and subtypes, other mental and physical health,

anthropometry, demographics, extensive non-communicable disease risk factor

questionnaires, disability/functioning, health service utilization, care arrangements


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and caregiver strain). A publicly accessible data archive has been established as a

resource for the academic community (www.alz.co.uk/1066)

The Prevalence of Dementia

The prevalence of DSM-IV dementia varied widely, from less than one percent

in the least developed sites (India and rural Peru) to 6.4% in Cuba. (Llibre R et al

2008) 10/66 dementia prevalence was higher than that of DSM-IV dementia and

more consistent across sites, varying between 5.6% and 11.7%. (Llibre R et al 2008).

The discrepancy was explained by the observation that informants in the least

developed sites, particularly India, were less likely to report cognitive decline and

social impairment events in the presence of objective memory impairment. After

standardizing for age and sex, DSM IV dementia prevalence was similar in urban

Latin American sites to that in Europe, but in China the prevalence was only one half

and in India and rural Latin America, one-quarter or less of the European prevalence.

Variations in Dementia Prevalence between Countries

The consensus until recently has been that there are no important regional

differences in the frequency of dementia or AD. Jorm and colleagues reviewed 47

studies of the prevalence of dementia published between 1945 and 1985. Much of

the variability in prevalence between studies was explained by the different methods

used by the investigators, in particular: sampling, inclusion and exclusion criteria,

research instruments and diagnostic criteria. Corrada and colleagues reviewed AD

prevalence surveys published between 1984 and 1993, with a very similar pattern of

findings. Since then the research methods for these investigations have been

increasingly refined and standardized The EURODEM consortium found that among

European studies using similar methodologies and diagnostic criteria, there were only

trivial differences in the age-specific prevalence of dementia (12 studies) and AD (six

centres), Eight concluding that ecological comparisons were unlikely to be

informative about aetiology. However, the large majority of these studies have been

carried out in urban settings in developed countries.


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Other evidence suggests that AD may be less common in rural than in urban

areas, and in developing compared with developed regions. A recent review of

population-based dementia prevalence studies in the developing world by the 10/66

Dementia Research Group identified a large variation in the age-adjusted prevalence

of dementia, from 1.3 to 5.3% for all those aged 60 years or over and from 1.7 to

5.2% for all those aged 65 and over. This may represent genuine differences in

dementia prevalence, or may simply be an artifact of the methodological differences

between the studies. Two of the studies by the 10/66 Dementia Research Group from

developing countries reported a strikingly low prevalence of dementia. These are the

two studies from developing countries with the most rigorously developed culture-

and education-fair dementia diagnostic procedures, which had been harmonised for

use in US–Nigeria and US–India trans-national studies. The Nigerian study

supported earlier observations on the rarity of AD in Ibadan, and on the absence of

amyloid plaques and neurofibrillary tangles in an unselected brain autopsy series.

From these and other studies, there seems to be a general trend for the dementia

prevalence estimates from the developing world, age-adjusted, to be lower than

those for the developed world.

In addition to the possibility of true differences in the prevalence of dementia

there is the possibility of other explanations. First, diagnostic procedures for

psychiatric disorders that have been standardized in one setting cannot be applied

indiscriminately to another. They may turn out to be culturally biased, giving a

misleadingly high or low estimate of the prevalence of the disease.

Second, other methodological differences between studies, for example in

sampling procedures and in inclusion and exclusion criteria, may have important

effects on prevalence estimates. Third, the observed low prevalence in the

developing world may be accounted for either by selective out-migration of

susceptible persons, or by immigration of those unlikely to develop the disorder, and

vice versa for high prevalence.


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Finally, prevalence is the product of incidence and duration; low prevalence

rates may indicate a high recovery rate (unlikely in dementia) or a low survival rate

for those with the disorder, rather than a true difference in incidence. So the low

prevalence of dementia and AD seen in Nigeria and in India may reflect a particularly

high mortality rate among people with dementia, or those at risk of dementia in

developing countries.

Variations in Dementia Prevalence over time

Two epidemiological programmes have continued to survey the residents of

the same area over long periods, and are therefore in the unusual position of being

able to comment on the trends in the prevalence of dementia over time. The Lundby

study in Sweden reported no significant change in the prevalence or incidence of

either multiinfarct dementia or what was described at the time as “senile dementia”

(now most probably AD) over the period from 1947 to 1972. In Rochester in the USA,

the meticulously maintained healthcare register suggested no change in the

prevalence of either AD or dementia between 1975 and 1980.

However, despite the recent stability of prevalence rates one cannot exclude

the possibility that dementia is a more common disease nowadays than say 100 or

even 50 years ago, at a time when developed countries were still developing.

Accounts of typical cases of AD are to be found in historical sources, centuries before

Alois Alzheimer’s description of early-onset cases.

However, there are no hard data on prevalence that would allow valid

comparison with modern studies. The recent findings of a substantial prospective

association between both established vascular disease and its risk factors and risk

for AD and dementia, suggest that efforts to prevent vascular disease may also

reduce incidence rates for dementia and AD. Changes in vascular risk exposures,

particularly reduction in smoking together with improvements in treatment of

hypertension and established vascular disease, have led to a reduction in

cardiovascular and cerebrovascular morbidity and mortality in many populations in

the developed world. It will be both interesting and important in the future to monitor


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whether these changes have a discernable effect on the age-specific incidence of

dementia and AD. Recent standardization of research methods and the

establishment of precise baseline estimates in large population-based samples will

assist such future secular comparisons. Any reductions in age-specific incidence

rates are still likely to be accompanied by an increase in the absolute numbers of

those with dementia, because of the continuing ageing of the population in developed

and developing countries.

Some Indian Studies on Prevalence

In a community-based epidemiologic study of Shaji et al (1996) of dementia in

a rural population in India investigated the prevalence of various dementing disorders

in the community, psychosocial correlates of the morbidity, and assessment of the

risk factors associated with dementia. It was a door to door survey conducted to

identify elderly people aged 60 and above. A total of 2067 elderly persons were then

screened with a vernacular adaptation of the MMSE. Sixty- six cases of dementia

were identified from 2067 persons aged 60 and above, a prevalence rate of 31.9 per

thousand. After correction this rate was 33.9 per thousand. Fifty-eight percent of the

dementia cases were diagnosed as vascular dementia and 41% satisfied the criteria

for ICD-10 dementia in Alzheimer's disease. There were more women in the

Alzheimer's disease group; smoking and hypertension were associated with vascular

dementia while a family history of dementia was more likely in the Alzheimer's group.

In a study by Rajkumar et al (1997) to estimate the prevalence of dementia in

a rural population was conducted in a community located on the outskirts of Madras

city in South India. Seven hundred and fifty elderly 60 years of age and older,

selected using the cluster sampling technique, were interviewed using the Geriatric

Mental State schedule (GMS). The prevalence of dementia was 3.5%, the

percentage increasing with age. These rural prevalence estimates were higher than

in urban settings (WHO multicentre study on cognitive impairment and dementia in

developed and developing countries) and male/female differences were negligible.


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In an Indo-US study by Chandra et al (1998) which determined to study the

prevalence of AD and other dementias in a rural elderly Hindi-speaking population in

Northern state in a community survey of a cohort of 5,126 individuals aged 55 years

and older. It was found that an overall prevalence rate of 0.84% (95% CI, 0.61 to

1.13) for all dementias with a CDR score of at least 0.5 in the population aged 55

years and older, and an overall prevalence rate of 1.36% (95% CI, 0.96 to 1.88) in

the population aged 65 years and older. The overall prevalence rate for AD was

0.62% (95% CI, 0.43 to 0.88) in the population aged 55+ and 1.07% (95% CI, 0.72 to

1.53) in the population aged 65+. Greater age was associated significantly with

higher prevalence of both AD and all dementias, but neither gender nor literacy was

associated with prevalence.

In a 3-year epidemiological survey for dementia in an urban community-

resident population in Mumbai (Vas et al 2001) wherein the prevalence of all types of

dementia was determined. Diagnoses were made jointly by a neurologist,

psychiatrist, and psychologist using the DSM-IV diagnostic criteria. Subjects were

rated on the Clinical Dementia Rating (CDR) scale and assessed for activities of daily

living. One hundred five subjects with dementia (CDR > or = 0.5) were identified in

this population of 24,488 persons. The prevalence rate for dementia in those aged 40

years and more was 0.43% and for persons aged 65 and above was 2.44%.

Seventy-eight individuals had a CDR of > or = 1 yielding an overall prevalence rate of

0.32%, and a prevalence rate of 1.81% for those aged 65 years and older. The

overall prevalence rate for Alzheimer's disease (AD) in the population was 0.25%,

and 1.5% for those aged 65 years and above. AD (65%) was the most common

cause of dementia followed by vascular dementia (22%). There were more women

than men in the AD group. Increasing age was associated with a higher prevalence

of the dementia syndrome in general as well as AD specifically. In this population the

prevalence of AD and other dementias was less than that reported from developed

countries but similar to results of other studies in India.

In a study by Shaji et al (2005) to study the prevalence, psychosocial

correlates and risk factors of various dementing disorders in an urban population in


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Kerala. It was a door-to-door survey to identify residents aged 65 years using cluster

sampling. Of 1934 people screened with a vernacular adaptation of the Mini-Mental

State Examination all those scoring at or below the cut-off of 23 were evaluated

further. Prevalence of dementia was 33.6 per 1000 (95% CI 27.3-40.7). Alzheimer's

disease was the most common type (54%) followed by vascular dementia (39%), and

7% of cases were due to causes such as infection, tumour and trauma. Family history

of dementia was a risk factor for Alzheimer's disease and history of hypertension was

a risk factor for vascular dementia.

While two thirds of the 24 million people with dementia worldwide live in low

and middle income countries, very little research has been conducted to support

policy making in these regions. Among the non-communicable diseases, dementia (in

common with other chronic NCDs linked more to long-term disability than to mortality)

has been relatively under-prioritized.

Research into dementia is needed in developing countries. Assessment of

variations in disease frequency between regions might enhance our understanding of

the disease, but methodological difficulties need to be addressed. Differences in

prevalence and incidence between populations can be interpreted with confidence

only if they result from common, standardized procedures that are culturally sensitive

Dementia in India is largely a hidden problem with no community awareness

and little help seeking from affected families, despite high levels of strain.

The networking of Indian dementia researchers began in 1998 at Cochin with

the formation of 10/66 Dementia Research Group. Seven groups of researchers from

six centres in India took part in two pilot studies (Prince et al 2003; Prince 2004). A

case finding method was developed for identification of cases in the community

(Shaji et al 2002).The Indian network of 10/66 Dementia Research Group developed

a community based intervention programme. The intervention includes provision of

information and education about dementia, sustained carer support and guidance in

managing symptoms of dementia. Intervention trials from India and Russia have


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reported highly promising results (Dias et al 2008; Gavrilova et al 2008). However,

development of large scale psychogeriatric or dementia care services is not feasible

in the developing world (Dening & Shaji 2005). We need to integrate dementia care

with general health care by adding a dementia care component to the existing

services. We can equip the outreach services to support home based care of people

with dementia. Integration with general health care or geriatric care will help to scale

up dementia care services in the region.

2. Studies related to Psychosocial aspects related to Informal Care giving for Persons with Dementia

Caregiving is part of all relationships. It is the act of providing assistance to

someone with whom one has a personal relationship. It is usually an extension of

caring and a reciprocal act. In conditions of chronic progressive disease such as

Dementia, the act of caregiving is primarily from one person and reciprocal caregiving

is diminished. In these situations, caregiving can become stressful and threaten the

well-being of the caregiver and the care recipient with significant negative economic,

social, and psychological impacts.

The primary informal caregiver is defined as anybody who is mostly

responsible to provide unpaid help (other than some form of caregiving satisfaction)

for the care recipient within a social environment simply because the care recipient is

unable to perform daily activities because of inability to perform independent

functions (Anderson & Aday 1978).

The scientific literature on care giving offers a plethora of published studies

carried out by researchers from all the social science and many of the health-science

disciplines and dementia is the most frequently studied type of care giving

represented in the literature. Older adults with dementia receive assistance from their

spouse or their adult daughter and care giving involves a significant expenditure of

time, energy and money over potentially long periods of times; it involves tasks that

may be unpleasant and uncomfortable and are psychologically stressful and

physically exhausting (Schulz & Martire 2004). For some individuals the care giving


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role may last many years or decades and it may be stressful for both the patient and

the care giver because of the progression of the chronic illness, the problematic

behavior associated with the disease, and the cognitive and functional decline.

The interest for care giving burden as a research construct started in the

1970s for families caring for relatives with chronic psychiatric illnesses like

schizophrenia. Later on, many researchers concentrated on the care of people with

dementia, especially Alzheimer’s disease, labeling the care givers of these patients

as the “hidden victims” of the disease (Zarit 1986). The growing interest on the

subject has developed for two important factors. The first is the increasing number of

people expected to live over 80, where the incidence of the disease is almost 50%,

accompanied by the enormous economic costs to the families and the society as a

whole. The second reason is that most of the people with dementia live at home and

its estimated members. (Schulz & Martire 2000). The primary care giver of a person

with dementia is usually the spouse who is also old, has lower income and many

limitations because of his or her own accompanying health or senility problems.

Spouses are also vulnerable group as to give up their role as care givers despite

being frail themselves and having smaller social support networks than do other care

givers (Wallsten 2000) Historically, most of the studies started to explore the patient’s

problems and limitations because it was considered that they were the most

important causative agent of burden. Many studies have found that the cognitive and

mostly the behavioral problems (Teri1990; Clark 2003) can determine the severity of

burden and also the patient’s time of institutionalization.

Caregiver Characteristics

More recently it has been recognized that the personal characteristics of the

care giver and his or her vulnerabilities could constitute a major predisposing factor

for developing burden and other negative physical or psychological consequences of

care giving. Variables such as personality characteristics, attitudes and beliefs can

act as moderators at any stage of the stress process. Researchers have also focused

on demographic characteristic, the health of the care givers and especially the

relation between the care giver and the care receiver. It is also observed that there


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are factors which may act as mediators for they are influencing in a considerable

extent the way that people understand, appraise, perceive. Or they react to stressful

stimuli. Based on the stress-coping theories, many researchers claim that the care

giving situation and the demands driven by the level of the patient’s disability and the

consequent care giving tasks represents major stressful stimuli. When people are

facing this kind of a situation they evaluate whether they have the recourses to cope

with these demands and if these demands pose a potential threat. These mediating

factors include the coping strategies used by care givers to cope with the stressful

experience as well as the supportive mechanisms in the family, or other social

support measures that may determine the experience of care giving burden.

A huge body of gerontology research has also focused on the negative effects

of care giving on the psychological, physical and general health as well as on the

quality of life of the care giver. There is strong consensus that caring for an elderly

individual with disability is burdensome and stressful to many family members and

contributes to psychiatric morbidity in the form of depression and anxiety (Bell 2001). Most studies indicate that women caregivers report higher levels of depressive

symptomatology and anxiety and lower life satisfaction than male care givers.

Researchers also suggest that the combination of loss, prolonged distress, physical

demands of care giving and biological vulnerabilities of older care givers may

compromise their physiological functioning and increase their risk of physical health

problems (Vitaliano 1995; Von et al 2003).

There is evidence that some care givers are at an increased risk for serious

illness and mortality (Burns 2000) because of declining immunity, greater

cardiovascular reactivity, significant increase in systolic blood pressure and slowing

of wound healing. Burns (2000) further mentions that care givers also report greater

use of medication, pain relievers and heartburn remedies, their illness episodes are

of longer duration and resulted in more physician visits and more frequent

hospitalization than non caregivers.


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There are studies showing that care givers are less likely to engage in

preventive health behaviors, and poor health leads to restricted mobility and social

contacts thus reducing the support care givers receive from networks of friends and

relatives (O’Rourke 2003). Overall the convergence of evidence from these studies

indicates that a meaningful risk for adverse psychiatric and physical health outcomes

exists for some care givers who sustain high levels of care giving demands,

experience chronic stress associated with care giving and are physiologically

compromised.

Inequalities are another issue presented in the care giving literature. Even if

the vulnerability of the poorest classes and especially women in the society is always

higher than for the wealthier groups, the conjuncture, the life course can be a factor

of shifting in the victim group. Old age per se, age discrimination, the myths about old

age and the general physical decline make the elderly care givers more vulnerable to

many kinds of inequalities.

Gender, Relationship to the Caregiver & Care giving

Male and female caregivers differ in care provision and caregiving distress

(burden and mental distress outcomes); males display fewer adverse effects. (Young

& Kahana 1989).Gender is important since the sexes differ on the kind of caregiving

provided; men usually give smaller time and intimacy commitments and they are

frequently in the secondary, rather than primary, caregiver role--even for their own

parents. Women in most societies, whether they are wives, daughters, daughters-in-

law, nieces or granddaughters, traditionally have been the family members who care

for the elderly

Women experienced greater strain regardless of whether they were caring for

a physically or mentally disabled person. .Women are the major providers of long-

term care in this country, but they also have long-term care needs of their own.

Women live longer than men, tend to outlive their spouses, and have less access to

retirement savings such as pensions.


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Although the stereotypical view of caregiving for the elderly is that of children

caring for their aged parents, for many older people the main person who provides

care is their spouse (Shuman, 1994).This is true in both developed and developing

nations. Because of the sex difference in longevity, older women are more likely than

older men to find themselves without a spouse. Thus, if they need care, they have to

turn to other family members or to institutions.

Caregiver responses vary with their relationship to the recipient. Women, non-

spousal caregivers, and daughters, in particular, experienced the most severe

aftereffects. Patient-caregiver relationship is an essential component of caregiver

strain. (Young & Kahana,1989). Daughters were 3.22 times more likely than sons to

provide ADL (assistance with activities of daily living) assistance and 2.56 times more

likely to provide IADL (assistance with instrumental activities of daily living)

assistance. (Dwyer & Coward, 1991).

The 10/66 Dementia Research Group's multicentre pilot study (Morton 2004)

was the first systematic, comprehensive assessment of care arrangements for people

with dementia in the developing world, and of the impacts upon their family

caregivers. The findings were similar to those in the developed world as reported in

the EUROCARE study, with data from 14 European countries (Schneider et al 1999)

In both settings, most caregivers were older women caring for their husbands or

younger women caring for a parent, and caring was associated with substantial

psychological strain.

In a qualitative study of caregivers of persons with Alzheimer's disease, It was

found that majority of caregivers were young women, often daughters-in-law of

patients affected by dementia (Shaji et al 2003).

Spouses are at risk because of their own physical frailties and loss of support

(Cohen et al 1993) Alternatively, caring for a spouse may be viewed as a marriage

commitment, but caring for a parent may produce conflicts with a spouse and/or

children (Brody 1981).


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In Brazil, informal care is delivered to about 80 to 90% of cases of assistance

to the elderly (Queiroz 2000).In general, caregivers are women, usually wives or

daughters who, even having a paid job, diminish their social and leisure activities to

care for a close relative (Neri & Sommerhalder 2002; Inouye 2008).

The 10/66 Dementia group (2004) first comprehensive assessment of care

arrangements for people with dementia in 24 centres in India, China and South East

Asia, Latin America and the Caribbean and Africa. It was a descriptive and

comparative study of dementia care; caregiver characteristics, the nature of care

provided, and the practical, psychological (Zarit Burden Interview, General Health

Questionnaire) and economic impact upon the caregiver. 706 persons with dementia,

and their caregivers were interviewed. Most caregivers were women, living with the

person with dementia in extended family households. One-quarter to one-half of

households included a child. Larger households were associated with lower caregiver

strain, where the caregiver was co-resident. However, despite the traditional

apparatus of family care, levels of caregiver strain were at least as high as in the

developed world. Many had cutback on work to care and faced the additional

expense of paid carers and health services. Families from the poorest countries were

particularly likely to have used expensive private medical services, and to be

spending more than 10% of the per capita GNP on health care.

Men are less likely than women to assume care giving responsibilities and

thus are less likely to be exposed to the demands of care giving. The results of most

studies indicate that the women caregivers especially tend to report higher levels of

depression, anxiety, general psychiatric symptomatology and lower levels of

satisfaction than men care givers (Yee & Schulz 2000). Several researchers have

argued that women care givers may be more vulnerable to burden and negative

mental health effects because they tend to be exposed to greater care giving

demands than men, they are providing more care giving assistance in general and

are more likely to help with more hands-on and day-to-day care giving activities

(Coorg et al 2001).


43

Consistent with the reasoning that women are more likely to experience role

strain as a result of care giving, it was found that gender was a significant predictor of

reduced work effectiveness, giving up work, or difficulty in combining work and family.

Women care givers, especially those fully assume the role as primary care giver to

an impaired relative and in contrast, men are more likely to become secondary care

givers (Yee & Schulz 2000).

Women care givers may be at a greater risk for psychiatric symptomatology

because they are less likely to obtain assistance with care giving. Studies support

that because men are less comfortable with their care giving role, they are more

inclined to seek and receive outside assistance for care giving from formal and

informal sources. It is also argued that because assuming the care giving role is not

expected of men, others are more likely to notice the care that men are providing and

to assist them with care giving to a greater degree than they would or women.

Sandwich Generation-A new phenomenon

One aspect of caregiving that has received a great deal of attention is the so

called “sandwich generation”, that is, people who find themselves caring for elderly

parents while also caring for their own children. The increases in life expectancy

experienced in most countries have enhanced the likelihood that middle-aged adults

will find themselves caring for older parents. When the sandwich generation has to

care for parents who are aged 80 and older, the demands of caregiving are likely to

increase as parents in this age group often have more pressing needs than their

younger counter-parts.

Sandwich generation caregivers are often faced with as much risk of sickness

and injury as those they are caring for. Caregivers show signs of isolation; turning

inward and not communicating. Alcohol and drug abuse is also a telltale sign of

sandwich generation stress, which can result in low immune system defenses,

meaning more days off from work, which can in turn escalate the financial hardships

during care-giving periods.


44

Research investigating the effect of multigenerational caregiving on family

relationships and family functioning is limited. Loomis and Booth (1995) looked at a

national sample of middle-aged married persons to document the effect of multiple

caregiving responsibilities on individual caregivers. The authors found that multi-

generational caregiving had little to no effect on the dependent variables of

psychological wellbeing, satisfaction with leisure time, financial resources, or marital

quality. Ward and Spitze (1998) investigated the frequency of multigenerational

caregiving and the impact of these responsibilities on perceived marital quality. Even

though women provided more assistance to children and parents than men, marital

happiness was shown to increase with age.

3. Studies Related to Health Conditions of Care Givers

Effects of caregiving on physical health have received less theoretical and

empirical attention than effects on psychological health. Current research indicates

that the physical and emotional demands of caregiving can lead to lower self ratings

of health, poor immune functioning, and greater engagement in unhealthy behaviors

in the caregiver. The burdens and health risks can hinder the caregivers’ ability to

provide care, lead to higher health care costs and affect the quality of life of both the

caregiver and care receivers.

Caregiving is associated with changes in physical health status. A growing

body of evidence suggests that caregiving has important ramifications for physical

health status (Grant 1999; Vitaliano 1997). When cross-sectionally compared with

non-caregiving controls, caregivers report poorer levels of perceived health (Schulz

et al 1995), a greater number of physical symptoms (Cohen 1988; Deimling 1989;

Haley 1987; Moritz 1989; Sainsbury 1970; Satariano 1984; Stone 1987) and more

chronic illnesses (Pruchno 1989). In addition, it has been demonstrated that

caregivers mount poorer immune responses to viral challenges (Glaser 1997), show

slower rates of wound healing ( Kiecolt-Glaser 1995), and have significantly higher

levels of plasma insulin ( Vitaliano 1996) than do age-matched controls. Furthermore,

some longitudinal studies demonstrate that caregivers are at a greater risk than non-

caregiving age-matched controls for developing mild hypertension (Shaw & Patterson


45

et al 1999), and have an increased tendency to develop serious illness (Shaw &

Patterson et al. 1997). Furthermore, a prospective study (Schulz & Beach 1999)

found that the relative risk for all-cause mortality among older spousal caregivers

experiencing caregiver strain was 63% higher than that which was seen in non-

caregiving controls.

Evidence shows that most caregivers are ill-prepared for their role and provide

care with little or no support, (Family Caregiver Alliance 2006). Yet more than one-

third of caregivers continue to provide intense care to others while suffering from poor

health themselves (Navaie-Waliser et al 2002) .Studies have shown that an influential

factor in a caregiver’s decision to place an impaired relative in a long-term care

facility is the family caregiver’s own physical health (Buhr et al 2006; Whitlatch et al

1999; Lieberman, & Kramer 1991).

Studies also have shown that caregiver’s exhibit exaggerated cardiovascular

responses to stressful conditions which put them at greater risk than non caregivers

for the development of cardiovascular syndromes such as high blood pressure or

heart disease (King et al 1994; Shaw et al 1999).

In a prospective study by Lee et al (2003) it was noted that women providing

care to an ill/disabled spouse are more likely to report a personal history of high

blood pressure, diabetes and higher levels of cholesterol. In the same study it was

observed that women who spend nine or more hours a week caring for an ill or

disabled spouse increased their risk of heart disease two-fold.

Health may be affected through multiple pathways. For example, such effects

may occur indirectly through poor health behaviors or non-adherence to medical

recommendations. Immune and endocrine pathways have been discussed by

Kiecolt-Glaser et al (2002). Several studies have found that caregivers, particularly

those under considerable stress or with little opportunity for respite, have increased

peripheral markers of sympathetic nervous system activation. For example, it has

been demonstrated that caregivers who were classified as vulnerable to stress


46

(based on a mismatch between the amount of patient care required and the amount

of respite available) had higher plasma levels of adrenocorticotropic hormone (Irwin

et al 1997) and catecholamines and fewer circulating CD8+ 62L7 ‘memory’ T

lymphocytes (Mills, Yu, Ziegler et al.1999). Changes in coagulation molecules have

been implicated in atherosclerosis and have also been related to chronic and acute

stressors. Mills, Yu, Ziegler et al.1999 found the highest levels of a marker of fibrin

formation and degradation (fibrin D-dimer) in those experiencing the greatest life-

event stress and caring for persons with Alzheimer’s disease, and also found that

both thrombin-antithrombin III complex and fibrin D-dimer increased with exposure to

laboratory stressors (Von et al 2003). This study also confirmed that the stressor

provoked sympathetic activation, through hemodynamics and plasma

catecholamines. Similarly, following the experience of a most intense life-event (i.e. a

major earthquake), another group reported increased fibrin D-dimer that was

accompanied by increased prevalence of acute coronary events (Kario, et al 1997).

Taken together, these findings outline a pathway by which stress, such as that

associated with caring for a person with Alzheimer’s disease, might lead to increased

risk of cardiovascular disease.

As families struggle to care for others, their own health is put in danger. As a

result, caregiver health is quickly becoming a public health issue that requires more

focused attention from health professionals, policy makers and caregivers

themselves to ensure the health and safety of those individuals dedicating their lives

to the care of others.

Increasing appropriate mental health services and medical care for family

caregivers are important steps toward addressing caregiver health. Although

caregiving can have a negative impact on caregivers’ health and well-being, research

demonstrates its effects can be alleviated at least partially by:

• An assessment of family caregiver needs that leads to a care plan with

support services (Guberman et al 2001)

• Caregiver education and support programs (Cooke et al 2001;Gallagher etal

2000)


47

• Respite to reduce caregiver burden (Lyons & Zarit1999;Zarit et al 1999)

• Financial support to alleviate the economic stress of caregiving; and

• Primary care interventions that address caregiver needs (The Lewin Group

2002; Kaye et al 2003).

Improved recognition and treatment of physical and psychological symptoms

among caregivers is a growing health concern and should be considered a public

health priority. Keeping family caregivers healthy and able to provide care is key to

maintaining our nation’s long-term care system and, with the aging of the population,

this issue will only grow more important in the coming decades.

4. Studies Related to Strain Experienced by the Care Givers

Within the last decade there has been a multitude of research related to the

phenomenon of caregiver burden. Although the concept is relatively new in the

literature, the responsibility and ultimately consequences of caring for another family

member has existed for centuries. Often this responsibility lies with the female

members of the family, but lately more husbands, sons, close family members, or

friends have assumed the primary caregiver role.

The concept of caregiver's burden is complex and to date only partially

understood, although this topic is receiving increasing attention. Caregiver role strain,

caregiver burden, caregiver stress, and caregiver distress are all words that are used

to describe feeling overwhelmed about providing care to a family member with an

illness. In the first place, caregivers burden is a multi-component construct,

influenced by the characteristics of both the person with dementia (e.g., behavioural

problems) and his/her caregiver (e.g., perceived stress, psychological wellbeing, lack

of knowledge, immature coping), the social context (e.g., finances, social support,

family help). When measuring caregiver’s burden, the specific component of interest

should be specified. Secondly, a distinction should be made between objective and

subjective burden. Objective burden refers to the practical problems associated with

caregiving such as the patient functional dependence and problem behaviours.

Subjective burden refers to the emotional reaction of the caregiver to the demands of


48

the situation, such as feelings of incompetence or exhaustion. Furthermore, the

concept of subjective burden can be distinguished from psychiatric symptoms in the

caregiver, such as anxiety and depression. The distinction between objective and

subjective burden is important because the association between the severity of

impairment in the dementia patient and caregiver well-being is not straightforward.

The very nature of the caregiving role creates considerable stress or burden.

Kasuya et al (2000) described caregiver burden as "the strain or load borne by a

person who cares for an elderly, chronically ill, or disabled family member or other

person. . . . the point where the experience is no longer a viable or healthy option for

either the caregiver or the person receiving care". The authors further recognized a

multitude of factors contributing to this burden to include physical, psychological,

social, financial, and emotional stressors. As further noted, the shift in modern

medical care to ambulatory/outpatient modes has increased the responsibilities of the

patient's family caregivers

Although the literature on caregiver burden tends to highlight the negative

effects on persons in the caregiver role, numerous studies have investigated the

positive impact of tending to an ill relative's needs. Elderly spousal caregivers of

persons with Alzheimer's disease studied in a cross-national study were found to

derive satisfaction from doing their job well, experiencing affection and

companionship from the care recipient, and fulfilling a perceived dutiful role (Murray

et al 1999).

Caregiver burden can include physical, psychological, social, and financial

problems (George & Gwyther1986); embarrassment; overload; and resentment (Zarit

et al 1980) Across all stages of dementia, feelings of lost control and/or

communication on the part of the caregiver are the best predictors of perceived

burden (Morris et al 1988).


49

The Negative Consequences of Providing Care Although many informal caregivers find caregiving to be emotionally satisfying

and personally enriching, caregiving has negative consequences for some. In recent

years, significant attention has been directed toward understanding the impact of

caregiving on caregivers’ personal and social well-being, and their health. Specific

factors that have been looked at include the physical and emotional health indicators

associated with stress, which include depression, sick days and health care

utilization. Although early studies focused on all caregivers, regardless of the

disabilities of the patients they cared for, more recent studies have distinguished

between the experiences of persons caring for elders with dementing illnesses and

elders with other types of disability.

Depression and anxiety appear to be significant problems for all caregivers

(Tennstedt, 1999). The rate of depression for non-dementia caregivers is 35.2

percent, which is twice that of the general population. Among dementia caregivers,

this rate has been found to be as high as 43 - 46% (Tennstedt, 1999).

Common physical complaints reported by caregivers include lack of sleep and

inadequate exercise and nutrition; these problems are attributed to patients’

(especially dementia patients’) disturbed sleep patterns or their need for constant

supervision (Tennstedt, 1999). Studies to substantiate the impact of caregiving on

caregivers’ health have, however, yielded inconsistent findings.

Significant attention in recent years has been directed toward understanding

caregivers’ stress. Stress is frequently described as the body’s “fight or flight”

response to danger or trauma. According to this explanation, the brain goes on “high

alert,” causing respiration and heart rate to speed up in order to provide the body with

the extra oxygen and nutrients it needs. Glucose is released into the blood and blood

pressure rises as vessels to less critical parts of the body constrict. The immune

system shuts down. Cholesterol and triglyceride levels become elevated. Common

physical indicators of stress include dry mouth, headache, confusion, nightmares,

indigestion, skin problems, clammy hands, tearfulness, feeling faint, eating disorders,


50

diarrhea or constipation, nausea, heart palpitations and fatigue. The term “burnout”

describes caregivers’ physical, emotional and mental exhaustion.

Although the stress response is a healthy reaction to danger, the body needs

to repair itself once danger is removed. For caregivers, whose stress often results

from fatigue and conflicts that never go away, their bodies never get a chance to

heal. Because the immune system stays shut down, caregivers are at increased risk

for infections and disease. Similarly, their blood pressure may remain high and their

arteries constricted. They may experience decreased blood flow to the heart. Stress

is believed by some to cause hypertension and to play a role in silent ischemia and

coronary disease. The “Caregiver Health Effects Study” (Schulz & Beach, 1999) revealed the shocking finding that caregivers who experienced the greatest levels of

stress were 63 percent more likely to die within the next 4 years than non-caregivers.

What Causes Caregiver Stress/strain?

Caregiver stress is a complex phenomenon. Early studies typically explained it

in relation to caregivers’ “burden”; burden was defined in terms of patients’ level of

disability and the extent of care they required. According to this explanation, the

greater the disability, the more care is required and the greater the stress on the

caregiver.

It has further been assumed by some that stress is associated with the type of

care provided, which varies according to the care receiver’s illness and its

progression. As described earlier, in the early stages of caring for dementia patients,

caregivers take over high-level activities like financial management, driving and

shopping; as the disease progresses, they assist with more basic tasks like dressing

and eating. It is during this middle phase that patients engage in potentially

dangerous and disruptive behavior such as wandering and combativeness. As the

impairment becomes more severe, these problems diminish but caregivers take on

heavier nursing care such as managing incontinence and avoiding pressure sores.


51

Studies that attribute caregiver stress to burden, however, fail to account for

the fact that some caregivers with heavy loads experience little stress, while others,

with fewer demands, experience high levels of stress. This observation has prompted

several researchers to explore subjective factors. Some have looked at caregivers’

personality traits or attitudes, including how they perceive and react to caregiving.

Others have looked at the dynamics between caregivers and receivers prior to and

subsequent to the onset of disability (often referred to as “premorbid” and

“postmorbid” relationships). Still others have focused on specific behaviors or

circumstances that cause distress and caregivers’ ways of coping.

It is now known that caregivers’ stress levels are affected, to a great extent, by

how they feel about their caregiving responsibilities and the people for whom they

provide care (Zarit & Toseland 1989). Stress levels are greatest for caregivers who

report that they feel overwhelmed, guilty, constantly in demand or “out of control.”

Those who feel they receive inadequate support from other family members also

report higher levels of stress. Caregivers who perceive the patients they care for as

manipulative, unappreciative or unreasonable also report higher levels of stress and

strain. Several studies have revealed that caregivers find certain behaviors of care

receivers to be particularly stressful (Quayhagen, et al 1997; Deimling & Bass, 1986;

Compton, Flanagan & Gregg, 1997). These include patients’ lack of impulse control,

volatility, anger, self-absorption, inability to show enthusiasm, poor concentration,

paranoia, withdrawal, aggression, repetition of words or actions, bizarre behavior

resulting from hallucinations, severe mood swings, verbal or physical aggression,

combativeness, wandering, incontinence, sleeplessness and “sundowning” (the

tendency for patients’ mental functions to decrease through the course of the day).

Aggression and violence have emerged as primary causes of stress for caregivers.

Researchers have noted that violence and aggression are most likely to occur

while caregivers are providing personal care that requires physical contact, such as

bathing or dressing (Ware, Fairburn & Hope, 1990). The nature of the premorbid

relationship between caregivers and care receivers has also been found to be

significant in predicting stress (Hamel et al, 1990). Caregivers who had positive


52

relationships with patients in the past report lower levels of stress even when the

demands of caregiving are extremely high. The likelihood that caregivers will

experience stress and their level of stress also depend on caregivers’ coping ability

and the types of coping strategies they use (Tennstedt, 1999). A study by the

National Alliance for Caregiving and the American Association of Retired Persons

(1997) reported that the most common methods of coping used by caregivers were

prayer (74 percent), talking with friends of relatives (66 percent), exercise (38

percent), hobbies (36 percent), and seeking professional help or counseling (16

percent). Most caregivers used multiple coping mechanisms. Maladaptive coping

includes avoidance, smoking, drinking or over-eating.

Elder Abuse & Caregiving

The rapid growth of World’s older adult population, coupled with heightened

awareness of the demands of caregiving for older adults, has focused research and

public policy interest on the abuse and neglect/mistreatment of this population.

Estimates of the prevalence of abuse of older adults suffering from dementia

range from 5.4% in a study by Paveza et al. (1992) to 11.9% in a study by Coyne et

al. (1993). Studies of physical abuse by caregivers have yielded divergent results

reflecting variations in methodology and how caregiving was defined (Wolf, 1996). According to Lachs et al, who studied a cohort of elderly adults over a nine-year

period, those individuals who display progressive declines in ADL and cognitive

functioning over time-core characteristics of an illness such as Alzheimer's disease

(AD) are at particular risk for abuse.

Behavioral disturbances (Teri et al 1992), common to many demented elderly,

may also play a role in the association between elder abuse and dementia

An early study of abuse by non-spousal caregivers, for example, revealed that

23 percent engaged in some form of physical abuse. A survey administered to a

sample of 342 callers to a help line for caregivers found that 12 percent of the callers

had physically abused the person in their care at least once (Coyne, Reichman &


53

Berbig, 1993). Other studies have revealed rates of physical abuse by caregivers at 6

percent (Pillemer & Suiter 1992), 5 percent (Paveza, et al 1992), and 10.5 percent

(Compton et al 1997).

Other inconsistencies have also been observed. For example, one research

team identified adult offspring caregivers as the most likely to commit acts of violence

(Paveza et al 1992); others suggest that spousal caregivers are proportionately more

likely to abuse (Pillemer and Suiter, 1992). Assuming that caregiver abuse is related

to caregiver stress, several researchers have attempted to discern whether or not the

predictors of stress also predict abuse. This line of reasoning has yielded some

promising results. Depression, which is highly predictive of caregiver stress, has also

been found to be a strong predictor of elder abuse, particularly when caregivers’ level

of depression reaches near-clinical levels (Paveza et al 1992; Coyne et al 1993).

Similarly, cohabitation has been found to be highly predictive for both caregiver

stress and caregiver abuse (Pillemer and Suiter, 1992), although some suggest that

this is only true in cases of non-spousal caregiver abuse (Paveza et al 1992).

Several researchers who have taken a closer look at the process by which

caregiver stress turns to violence have observed intervening factors or links between

stress and violence. Bendik and his colleagues (1992), for example, postulated that

stress, in and of itself, does not cause caregivers to become abusive; rather, it leads

to “mood disturbances,” which may lead to abuse. When caregivers lack adequate

income, problem-solving skills or social support, or when they believe that the

situation is beyond their control, it triggers a sequence of events that lead to mood

disturbances and a loss of rational behavior. It is these mood disturbances that

culminate in mistreatment. Garcia and Kosberg (1992), identified anger as the

intermediary step or link between stress and abuse. Just as the early literature on

care-giving assumed that stress was directly related to burden (defined in terms of

care receivers’ disabilities and the amount of care they require), early researchers in

elder abuse also assumed that the risk of abuse increased in direct relation to the

amount of care required. There is some evidence to support this assumption. Coyne

and his colleagues (1993) observed, for example, that the risk of abuse is elevated


54

when caregivers provide high levels of care (defined in terms of hours of care per day

and the number of years that care is provided), and that victims function at lower

levels than their non-abused counterparts (Coyne, 1993). However, other studies of

caregiver abuse have mirrored the literature on caregiver stress in suggesting that

these objective measures of burden are less important than subjective factors. Some,

in fact, believe that victims of caregiver abuse are no more impaired and require no

more care than non-abused care receivers (Pillemer and Suitor, 1992). Many now

believe that it is the quality of past relationships between caregivers and care

receivers, caregivers’ perceptions of burden, and caregivers’ patterns of coping that

explain why stress leads some caregivers, but not others, to abuse.

Just as caregivers who have had close and positive relationships with patients

in the past are less likely to experience stress, so too are they less likely to become

violent. It has also been observed that care receivers who were violent toward their

caregivers prior to the onset of their illnesses, are more likely to suffer abuse at the

hands of their caregivers (Coyne et al 1993; Hamel et al1990).

The likelihood that caregivers will abuse also appears to be strongly linked to

how they perceive their situations. Abusive caregivers are more likely than non

abusive caregivers to feel that they are not receiving adequate help from their

families, social networks or public entities (Compton et al 1997; Anetzberger, 1987). Anetzberger (1987) found that these perceptions may be ungrounded. Abusive

caregivers who perceived themselves to be socially isolated, for example, were not,

in fact, found to be more isolated than their non-abusive counterparts when objective

measures of isolation were employed.

Abusive caregivers report that certain behaviors are particularly stressful to

them. These include verbal aggression, refusal to eat or take medications, calling the

police, invading the caregiver’s privacy, noisiness, “vulgar habits,” disruptive

behavior, embarrassing public displays and physical aggression (Compton et al

1997; Pillemer & Suitor, 1992; Anetzberger, 1987).


55

Caregivers’ low self-esteem has also emerged as a significant risk factor in

predicting abuse, although, as some researchers point out, the causal relationship

between abuse and self-esteem is not clear (Pillemer and Suiter, 1992). It has not

been determined whether low self-esteem is the cause or the result of abuse.

Both caregivers who reported directing abuse toward care recipients and

caregivers who reported being on the receiving end of abuse were found to have

been providing more hours of care per day, were caring for more functionally

impaired individuals, exhibited higher levels of burden and were more likely to be

depressed than those who did not report abusing care recipients or who had not

been abused by care recipients (Coyne et al 1993),

Although interrelationships involving abuse and caregiver burden and

depression appear to exist, it remains to be specified whether high levels of burden

and depression among caregivers lead to physical abuse or whether the opposite is

true and the occurrence of abusive behavior serves to increase burden and

depression.

Because the dynamics of elder abuse are not readily discernible, detection

and intervention are possible only after abuse has occurred. Yet, some elder abuse

can be prevented by systematic assessment of the older person and the potential

caregiver, as well as of the family constellation. There is no single strategy of elder

abuse prevention and intervention. Supporting caregivers, relieving their burden,

enhancing their knowledge and skills is a suitable strategy for many incidents and

types of abuse and neglect. Prevention and intervention strategies in the field of elder

abuse should (and can) be tailored to the different types of problem behaviour. The

criteria of intentionality of harm and of the situational or trans-situational character of

an intention to harm provide a useful starting point for a differentiated strategy of

elder abuse prevention and intervention.


56

5. Studies Related to Burden and Depression Experienced by the Informal Care Givers and Interventions

A growing number of psychoeducational, supportive, respite-based,

psychotherapy, care receiver-focused, and multicomponent interventions designed to

reduce caregiver burden have been published. The findings of these studies provide

a mixed picture of the efficacy of such interventions. Two recently published reviews

of psychosocial interventions took complementary descriptive approaches. The first,

by Cooke et al. (2001), focused on the social and cognitive content of published

interventions and found that about two-thirds of them failed to show improvements in

any outcome measured.

However, of those that had positive results, those that included a social

component (e.g. social support) or a combination of social and cognitive (e.g.

problem solving) were the most effective. The second review (Pusey & Richards

2001) focused on the mode of intervention delivery (group, individual, technology, or

service). They concluded that the methodological quality of the studies they reviewed

was poor, but individualized interventions that focused on problem solving and

behavior management were the most effective. In an editorial review of these two

studies, Charlesworth (2001) noted that both reviews suffered from a lack of a

quantitative synthesis (i.e. meta-analysis) of the studies they reviewed.

Sorensen and her colleagues (2002) conducted a quantitative meta-analysis

summarizing key issues in caregiver intervention research) conducted a meta-

analytic study of 78 identified caregiver interventions. These studies utilized six

outcome variables (i.e. caregiver burden, depression, subjective well-being,

perceived caregiver satisfaction, ability/knowledge, and care-receiver symptoms),

which examined caregivers to a number of disorders, the most common being

dementia caregivers, among a variety of caregivers (e.g. spouse versus family

member, male versus female, etc.). On an average, these interventions yielded

significant improvements of 0.14-0.41 standard deviation units. These effects were

larger when the outcome focused on increasing caregivers’ ability/knowledge than

when the outcome was burden and depression. Psychoeducational and


57

psychotherapeutic interventions showed the most consistent short-term effects over

all types of outcomes considered. More than half (61%) of the studies identified

focused only on care of dementia patients, while the rest of the studies focused on a

heterogeneous patient population (e.g. elderly subjects with physical disabilities or

mental illness, patients with strokes, and patients with cancer). Interestingly, the

intervention effects on dementia-patient carers, who, as a group, have been shown to

have higher stress levels than other caregivers, were smaller than for other groups.

However, since being an older caregiver was identified as a factor that moderated

intervention effects, and as dementia caregivers are often older, it is difficult to

disentangle the patient type and caregiver age. A number of other moderating effects

were identified which resulted in better outcomes. These moderating effects included

the following: an increased number of intervention sessions; delivery of the

intervention individually as opposed to delivery in a group setting; delivery of the

intervention to adult children as opposed to spouses; being a female caregiver;

starting the study with a greater subjective burden; and a number of study design

characteristics, such as outcome instruments (e.g. interventions that utilized the

Geriatric Depression Scale showed smaller effects sizes than those which used the

Beck Depression Inventory, and randomized control trials showed smaller effect

sizes than non-randomized trials). Sorensen and her colleagues (2002) concluded

that while caregiver interventions are generally effective, the effect sizes are modest

and have domain-specific effects rather than global effects.

Since the publication of the Sorensen review in 2002, a number of new

publications have appeared. For example, a number of reports that focus on the

National Institutes of Health-funded Resources for Enhancing Alzheimer’s Caregiver

Health Project have begun to be published. This project is a multisite program that is

evaluating the efficacy of a variety of interventions designed to reduce burden and

enhance quality of life for family caregivers of persons with dementia. For example,

one site is evaluating the efficacy of a telephone-based intervention designed to

facilitate links between caregivers and other supports, as well as to facilitate access

to information on available resources (Czala 2002). While the formal evaluation of


58

this intervention has not reached print, the system appears to be easy to use, and

caregivers reported that it facilitated communication with family and therapists.

Additional studies confirm mixed benefits from caregiving interventions. Wright

et al (2001) randomly assigned caregivers whose dementia patients were being

released from an in-patient program for the treatment of agitation to a five-session

psycho-educational intervention, but found no significant improvements in caregivers

stress, depression, or physical health in comparison with control caregivers. A non-

randomized study of Italian caregivers to Alzheimer’s disease patients with

behavioral disturbance suggested that an intervention which involved listening to the

caregiver’s problems and offering some concrete suggestions on the management of

behavioral problems reduced the caregiver’s negative reaction to those problems

(Monini, Tognetti, Cinque et al. 2001). A qualitative study of those caring for someone

with Alzheimer’s disease suggested that those caregivers who used a respite

program had time to attend to their own needs, and gained temporary relief from

stress and worry (Perry & Bontinen 2002); Hepburn et al. (2001) were successful in

decreasing caregiver burden, and in reducing negative reactions to patients’

disruptive behaviors, after implementing participation in a 7-week psycho-educational

skills program. Another intervention focusing on improving communication skills

produced increased awareness of strategies, but there were no differences, with

respect to controls, in terms of the number of communication problems in the home,

or in the levels of distress (Done 2001). Another intervention designed to reduce

stress appraisal positively affected impact, burden and satisfaction but had no effect

on mastery (Stolley 2002). King et al (2002) reported that individuals who participated

in an exercise intervention showed significant improvements in blood-pressure

reactivity and improved sleep in addition to increased levels of exercise and improved

diet.

Interventions that utilize physiological outcomes are conspicuously lacking in

the current literature. Hosaka and Sygiyama (2003) conducted a non-randomized

intervention study in which 20 female carers looking after dementia sufferers in Japan

participated in a five-session psycho-educational intervention. In addition to


59

reductions in measured depression, anger/hostility, fatigue and confusion (all

assessed using the Profile of Mood States), and improvements in physical symptoms

(as measured using General Health Questionnaire-30), there was a significant

augmentation of natural killer cell activity after the intervention. While this study

should be replicated using a more rigorous design, it does provide preliminary

evidence that psycho-educational interventions can have salutary effects on the

biology of carers looking after dementia sufferers. Our group found that caregivers

who received a 2-week in-home respite intervention and who were classified as being

vulnerable (i.e. there was a severe mismatch between the caregiving demands and

the help received) had a significant reduction in plasma epinephrine compared with

non vulnerable caregivers (Grant, McKibbin, Taylor, et al 2003).

In the moderate stage of dementia, the dementing person often requires some

level of support from other individuals to enable them to maintain their function. It is

often in this stage that carer’s begin to realize the full extent of the various demands

upon them. While the deteriorating memory function is a problem, it is usually not the

main feature that impacts upon the carer. It is more often the personality and

behavioral changes that cause the most concern, having the greatest effect on those

carers who live with the dementing person (Draper, 2004).

High Level Burden Leading to Depression

Caregivers provide assistance with activities of daily living, dealing with

incontinence, feeding and mobility. The majority (73%) of Alzheimer’s disease

caregivers age 65 and over provide high levels of care. These caregivers are twice

as likely to report physical strain and high levels of emotional stress as a direct result

of care giving responsibilities. Consequences of caring for someone with dementia

may also include the loss of companionship and support of a life partner (Mortiz

1989) and the detrimental effects of caring on the carer's health (Chenoweth 1986;

Haley 1987).Due to high burden and responsibilities caregivers experience poorer

self reported health, engage in fewer health promotion actions than noncaregivers,

and report lower life satisfaction (Acton 2002; Amirkhanyan & Wolf 2003; Burton et al

1997; Danhauer et al 2004; Ory et al 1999; Schulz et al 1995).


60

Family caregivers who have a significantly depressed mood may be adversely

affected in their ability to perform desirable health maintenance behaviour or self care

behaviours in response to symptoms (Yvonne & Mary 2005). Family caregivers

experience more physical and mental distress than non caregivers in the same age

group (Amirkhanyan & Wolf 2003; Schulz et al 1995).

Informal caregivers of individuals with AD (Alzheimer’s Disease) are one of our

health care system's greatest resources and their task is not an easy one being

fraught with psychological stress and physical exhaustion (Cohen et al 1990;

Grafstrom, Fratiglioni, Sandman & Winblad 1992; Vitaliano et al 1991). The vehicles

of psychological stress have been conceptualized as adjustment to change (Holmes

& Rahe 1967), daily hassles (Kanner et al 1981), and role strains (Pearlin 1983).

Lazarus and Folkman (1984) define stress as “a particular relationship between the

person and the environment that is appraised by the person as taxing or exceeding

his or her resources and endangering his or her well being”.

The burden and depressive symptoms sustained by caregivers of AD patients

have been the two most widely studied care giving outcomes. The association

between feelings of burden and the overall caregiver role is well documented

(Deimling, Bass, Townsend & Noelker 1989; George & Gwyther, 1986; Pratt, Wright

& Schmall 1987; Zarit, Todd & Zarit 1986). Several studies suggest that caregivers of

dementia patients are significantly more likely to be depressed than are non

caregiver controls (Dura, Stukenberg & Kiecolt-Glaser 1991; Haley et al 1987b;

Kiecolt-Glaser et al 1991; Russo, Vitaliano, Brewer, Katon & Becker 1995). Reports

indicate that depressive symptoms are twice as common among caregivers as non

caregivers (Baumgarten et al 1992; Canadian Study of Health and Aging Working

Group, 1994 Canadian Study of Health and Aging Working Group. (1994a).

Several studies suggest that many caregivers are at risk of experiencing

clinical depression (Gallant & Connel 1997; Schulz &Williamson 1991; Williamson &

Schulz, 1993). Nearly half of the caregivers in some studies were reported to meet

diagnostic criteria for depression when structured clinical interviews were used


61

(Cohen & Eisdorfer 1998; Gallangher et al 1989). There is also some evidence to

suggest that a diagnosis of depression can be causally related to the caregiving

situation. Dura et al 1991, found that nearly one quarter of caregivers met the criteria

for depression whilst in the caregiving role, although they had never been diagnosed

with depression prior to their assumption of this role. The societal implications of this

are underscored by reports indicating that the stressed caregiver is more likely to

institutionalize the care recipient (Cohen et al 1990; Colerick & George 1986; Haupt

& Kurz 1993). Covinsky et al (2003), concludes appropriately, that "efforts to identify

and treat caregiver depression will need to be multidisciplinary, consider the cultural

context of the patient and caregiver, and focus on multiple risk factors

simultaneously."

Risk factors leading to Carer’s depression

Prevalence of depression among caregivers of people with dementia has been

estimated at 40 and 60% (Redinbaugh et al 1995) which contrasts sharply with 8%

reported in non-caregivers of similar age (Blazer and Williams, 1980). Recognition of

risk factors or characteristics that may facilitate or are associated with the disease

process is therefore crucial.

Patient Characteristics

There is overwhelming support for the claim that a higher frequency of

behavioural problems presented by the patient is associated with an elevated level of

caregiver depression and burden. The frequency with which behavioural

disturbances are manifested by the patient has been identified as the strongest

predictor of caregiver distress and plays a significant role in the caregivers’ decision

to institutionalize the patient (Cohen et al 1990).

The literature consistently demonstrates that the frequency of behavioural

problems is a more reliable predictor of caregiver burden and depression than are the

functional and cognitive impairments of the individual (Cohen et al 1997; Pruchno &

Resch, 1989a; Williamson & Schulz, 1993). Carers face unfamiliar and unpredictable

situations, which increases stress and anxiety. Anxiety may be increased by


62

behavioural problems of the demented patients who cannot be successfully managed

on a consistent basis. Anxiety is associated with depression, stress, and physical ill

health. BPSD (Behavioural and Psychological Symptoms of depression) are

associated with patient distress (Ballard et al 1995a; Gilley et al 1991) and are

perceived by caregivers as the most difficult symptoms to manage (Rabins et al

1982). BPSD adversely affect the patient-caregiver relationship (Deimling & Bass

1989). Caregiver distress is particularly associated with aggressive behavioural

disturbance. BPSD therefore results in the increased level of caregiver burden

leading to depression. Not all changes of behaviour are a problem. Often an

explanation that the behavioural change is part of the dementia allows the carer to

tolerate it. At other times the behaviour itself is not abnormal, it is just occurring in the

wrong place or at the wrong time (Draper, 2004). Family caregivers of the persons

with dementia assist with tasks of daily living over an extended period of time.

Physical and functional impairments in dementia patients may increase the difficulty

of providing physical care and may be more distressing, for older family caregivers,

particularly spouse caregivers (Connell, Janevic & Gallant 2001).Findings regarding

the relationship of functional impairment and negative caregiver outcomes have been

inconclusive. Some studies document a weak association of objective measures of

patient functional status and caregiver burden/depression (Russo et al., 1995),

whereas others report a stronger relationship (Baumgarten et al 1992; Gallant &

Connell, 1997).

Joshua and colleagues (2003) identified three patient factors were found to

have a strong association with Alzheimer’s caregiver depression, which are: 1)

Depression in dementia patient; 2) ADL functional scores of 12 or greater; and 3) the

presence of hallucinations.

Not only have caregivers reported having poorer perceived health (Schulz et

al 1995) and a greater number of physical symptoms, but it has also been

demonstrated that caregivers mount poorer immune responses to viral challenges,

evidence slower rates of wound healing and have significantly higher levels of

plasma insulin (Vitaliano et al 1996) than do age matched control subjects.


63

Longitudinal studies also demonstrated that caregivers are at a greater risk than non-

care giving age matched controls for developing mild hypertension and have an

increased tendency to develop a serious illness (Shaw et al 1997) as well as

increased risk for all-cause mortality. Men and women who suffer depression have

greater cardiovascular risks. Many carers do not pay sufficient attention to their

needs for a healthy diet, sufficient sleep, and regular exercise. These practices are

also important for successful stress management. They have a protective role in

reducing the risk of depression and other health problems. Carers who do not attend

to their own health needs have a greater chance of developing health problems,

which leads to an increased risk of depression (Gruetzner, 2001). Other investigators

have found that family caregivers who did not take care of their own health reported

higher levels of caregiving stress and more problematic behaviours with the care

recipients (Shaw et al 1997).

Ethnic and Cultural affiliation: Ethnicity has substantial impact on the caregiving

experience (Gruetzner 2001). Explanations for lower burden and less depression

reported by Black carers as compared to those of their White counterparts have yet

to be clarified. Probable explanations suggested were that the distress of caregiving

may be viewed by Black carers as relatively minor, as they may be more likely to

view the symptoms of dementing illnesses as part of the normal ageing process, and

they may receive more help from other informal social support systems (Choi 1998).

Gender differences with respect to psychological well being of ethnic minority

caregivers has not been sufficiently addressed in the literature, although work by

Miller et al. suggest no gender differences between African Americans and Anglos

(Miller et al 1995). Cultural differences may affect caregiver’s attitudes about

treatment. In a study of primary care patients, Cooper (2003), found that acceptance

of antidepressant medication was significantly lower among African-American and

Hispanic patients than among whites, while more than 90% of African Americans

believed that "prayer can heal depression”.

Comprehensive reviews of the literature have identified differences in the

stress process, psychological outcomes, and service utilization among caregivers of


64

different racial and ethnic backgrounds (Connell & Gibson 1997). Studies consistently

show important differences in perceived burden and depression among African

American, White, and Hispanic family caregivers (Haley et al 1996). Studies suggest

that African American caregivers report fewer depressive symptoms and lower

burden than White or Hispanic caregivers (Connell & Gibson, 1997). Caucasian

caregivers tend to report greater depression and appraise caregiving as more

stressful than African American caregivers (Farran et al 1997; Haley et al 1996).

However, Hispanic caregivers report greater depression and behavioural burden than

Caucasians and African Americans (Harwood et al 1998).

A significant limitation of above studies is the lack of attention to the potential

impact or role of racial and ethnic identity on caregiving and how that may affect

responses to intervention (Aranda & Knight 1997; Connell & Gibson 1997). Culture is

known to influence the construction of illness perceptions. The failure to address

multicultural issues in intervention research has led to significant gaps in knowledge

about psychological problems such as depression and its treatment in the various

ethnic subgroups. It seems reasonable to expect that racial and ethnic identity may

shape cultural beliefs about dementia, which in turn may affect how families respond

to the challenges of long-term caregiving and interventions designed to support these

efforts (Haley, Han & Henderson, 1998).

Other Characteristics: Loss of self identity is associated with carer depression.

Carers face three processes that lead to this problem: chronic stress, role

engulfment, and the loss of the patient with dementia. Role engulfment is common

because carers no longer have the time or energy to engage in other activities. Prior

to caregiving these activities had been important sources of support.

Another category of risk predictors for carer depression involves

characteristics of the caregiving context, this includes the caregiver's relationship to

the care recipient and the living arrangements. The literature provides substantial

evidence that the caregiving experience is most difficult for spousal caregivers


65

(Pruchno & Resch, 1989a). Spousal caregivers experience more depressive

symptoms than other caregivers (Baumgarten et al 1992; Cohen et al 1990).

Findings concerning the relationship between patient residence and caregiver

outcome are inconsistent. Several studies have indicated that caregivers who lived

with their parents had higher burden or depression scores than those who lived apart

from the care recipient (Grafstorm et al 1992 et al 1997). Others, however, have

found no significant association between living arrangements and caregiver distress

(Dura et al 1991).

6. Studies related to care giver & their attitude towards their wards

Patient aggression and caregiver abuse have, in the past, been viewed as

separate and unrelated phenomena; the two are increasingly being seen as

interrelated. Several researchers have proposed that caregiving creates stresses that

affect both caregivers and patients, and that these stresses may trigger aggression in

one or the other partner, or both. Some even suggest that a more useful approach to

understanding the risk of abuse in caregiving relationships is to look at “families at

risk,” as opposed to individuals at risk.

Studies of families at risk have looked at pairs, or “dyads,” of caregivers and

care receivers in which one or both members are abusive. These studies have

revealed that caregivers in abusive dyads report higher levels of emotional and

mental burnout, poorer physical health, and stronger reactions to care receivers,

regardless of whether it is the caregiver or the care receiver who is violent

(Quayhagen et al 1997).

Depression and living together have been found to be predictive of abuse in

either direction (Paveza et al 1992). Paveza and his colleagues further suggest that

when abuse is mutual, which they found to be the case in 3.8 percent of the families,

it reflects a reactive pattern or feedback loop between caregivers and patients;

patients’ verbal and physical abuse prompts caregivers to abuse (Paveza et al 1992).


66

Fear of Becoming Violent The research on caregiver stress and abuse has revealed that a surprisingly

high proportion of caregivers (20 percent) live in fear that they will become violent.

This rate increases to 57 percent among caregivers who have experienced violence

from those they care for (Pillemer and Suitor, 1992). The fear of becoming abusive

also appears to be affected by living arrangement. Caregivers who live with care

receivers are more likely to experience fear, particularly when the caregiver is a

spouse and the marital relationship has been stressful. Fearful caregivers have also

been found to have lower self-esteem and to be older than non-fearful caregivers.

(Pillemer and Suiter, 1992)

Pillemer and Suiter (1992) went further in exploring whether the fear of

becoming abusive actually leads to or predicts violence. In looking at 236 caregivers,

they found that 14 percent feared they would become violent. Of these, 6 percent

actually engaged in violent behavior. When fearful, non-abusive caregivers were

compared with fearful abusive caregivers, several differences were observed. The

violent caregivers were more likely to have experienced violence from care receivers,

leading the researchers to conclude that “violence by care receivers is not only a risk

factor for fear of violence but also appears to move persons who are fearful of

becoming violent to actually commit violent acts”.

Abuse

Abuse, may include physical, psychological, sexual and financial

maltreatment, may be the result of the actions of others (e.g., caregivers) or may

result from neglect by others or by self (Dyer et al., 2000).

Caregivers’ depression, while providing care to a family member suffering from

dementia may lead to both verbal and physical abuse. Variety of studies has

identified risk factors for abuse of the elderly by family members and other caregivers

(Dyer et al 2000; Lachs et al 1997). Such factors include excessive physical and

psychological demands associated with caregiving; advanced age, poor health,

physical frailty and impaired activities of daily living (ADL) on the part of the care


67

recipient; alcohol and other substance abuse by caregivers; the caregiver and care

recipient living together; caregiver psychopathology; and a family history of abusive

behaviour. In addition, a number of investigators have found that mental health

factors such as caregivers’ depression while caring for a person with dementia

increase the risk of abuse within a caregiving relationship (Dyer et al 2000; Paveza et

al 1992). Caregivers themselves may face verbal or physical abuse directed at them

by the patient with dementia. In some cases, Alzheimer's disease or other forms of

dementia may cause the patient to be uncharacteristically aggressive. In other cases,

verbal abuse or physical violence may have been typical of family interactions before

the illness (Coyne et al 1996), and may be exacerbated by the illness.

A House of Commons report published on BBC (British Broadcasting

Corporation) in 2004 states that 67% of elderly abuse occurs in their own home,

12%in nursing homes & 10% in residential care.

There appears to be a relationship between abuse of a family member and

caregiver burden and depression. Caregivers who report directing abuse toward

patients are often more stressed or burdened by caregiving responsibilities and

depression than individuals not engaging in abuse.

Interventions to reduce burden and treat depression should serve to limit

abuse (Paveza et al 1992). Abuse prior to the onset of dementia appears to be

associated with a greater likelihood of abusiveness between caregivers and care

recipients once dementia occurs. Although such a cycle of abuse (Steinmetz 1988) is

difficult to break, interventions such as supportive counseling and individual or family

psychotherapy for caregivers, respite or in-home care services for patients, and

alternative living situations for all parties concerned may be helpful (Burkhart 1990).

Non-Physical Abuse Associated with Caregiver Stress

Although it has been assumed by many that caregivers who experience high

levels of stress may engage in other forms of mistreatment (besides physical abuse),

only a few studies have looked at the relationship between stress and non-physical


68

abuse. An early study on elder abuse (Steinmetz 1988) suggests that one in 6

caregivers resort to emotional or psychological abuse and about one-third use

verbally abusive methods to gain control. Compton (1997) estimated that as many as

26.3 percent of caregivers were verbally abusive (Compton, 1997). Neither study,

however, established a direct link between stress and abuse. The Australian study on

stress, coping and abuse (Rahman 1996), in which 30 female caregivers were

interviewed, revealed that some caregivers “felt so helpless that it made them lose

their power of concentration, leading to accidents” (e.g. falls). According to Rahman

(1996), however, these caregivers did not feel responsible for the accidents or blame

themselves.

Alzheimer's Disease International and its member national societies have

identified raising awareness of dementia among the general community and among

health workers as a global priority (Graham & Brodaty 1997) The general lack of

awareness has important consequences. First, there is no structured training on the

recognition and management of dementia at any level of the health service. Second,

in the absence of understanding regarding its origins, dementia is stigmatized: for

example, sufferers are specifically excluded from residential care, and often denied

admission to hospital facilities. Third, there is no constituency to place pressure on

the government or policy makers to start to provide more responsive dementia care

services (Shaji et al 2002). Fourth, while families are the main caregivers, they must

do so with little or no support or understanding from other individuals or agencies.

Behavioural symptoms of dementia (wandering, calling out and making accusations)

may be taken by outsiders as prima facie evidence of neglect or abuse. Caregivers

then face a double jeopardy: the strain of care heightened by the stigma and blame

that attaches to them because of the disturbed behaviour of their relative.

7. Studies Related to Problem Behaviour Symptoms of Persons with

Dementia and the Distress Experienced by the Care Givers Problem Behavior and Caregiver Distress

Behavioural and psychological symptoms in dementia is an umbrella term that

embraces a heterogeneous group of non-cognitive symptoms and behaviours that


69

occur in people with dementia. The concept of BPSD is a descriptive one and does

not reflect a diagnostic entity but rather high-lights an important clinical dimension of

dementia that has until recently been ignored from both research and therapeutic

points of view.

Behavioral symptoms such as resistance to care, shadowing, vocalizations, or

physical aggression are common in individuals living with dementia. Behaviors

profoundly affect individuals with dementia and their families, compromising their

quality of life and safety, heightening caregiver burden and risk for nursing home

placement, and increasing health care costs (Ballard, Lowery, Powell, O'Brien, Sc

James, 2000). Even passive behaviors (withdrawal, apathy) are sources of frustration

and sadness to families (Colling, 2004). Behaviors occur across the disease

trajectory and dementia types and cannot be attributed to cognitive impairment alone.

Emerging conceptual frameworks for understanding behavioral symptoms suggest

that behaviors are an outcome of the interaction of individuals and their environments

and should be addressed using nonpharmacological approaches.

Elder’s problem behaviours have become an important area of study.

Research on behavioral problems has taken three directions: (a) Identifying

behaviours peculiar to Alzheimer’s disease (AD) (Pruchno & Resh 1989), (b)

determining how to best manage the problems (Matteson et al. 1996), and (c)

focusing on caregiver reaction to problem behavior (Dunkin & Anderson-Hanley

1998). Research and practitioners have identified a number of problem behaviors

related to AD. These include paranoid and delusional ideation, hallucinations,

aggressiveness, affective disorders, and problems with activities of daily living

(Pruchno & Resh 1989a). Some troublesome behaviors are thought to be related to

specific stages of AD, for example, wandering is associated with the second stage.

After identification of the different types of problem behavior, the focus of research

has turned to how to manage or reduce the frequency of the behaviors. Past

management approaches have often followed the medical model of care with the

view of physical and chemical restraints. Research on such problem has

demonstrated that both types of restraints are associated with increased injuries,


70

falls, agitation and disorientation (Miles & Irvine1992). While there is more clinical

information about symptom management, the controlled studies have tested

behavioral interventions (Burgio 1996). One exception is the caregiver training

intervention designed to increase the caregiving family’s competence in managing

troublesome behaviors based on the progressively lowered stress threshold model

(PLST). This PLST intervention decreased depression in family caregivers (Gerdner,

Hall & Buckwalter 1996) Caregiver training for people with Alzheimer’s based on a

stress threshold model, other similar intervention studies are needed (Braithwaite

1996).

As frequency of specific problem behaviors is strongly dependent on patient

illness factors, frequency of problem behavior may not be easy to modify. To the

extent the caregivers perceive certain behaviors as negative because these

behaviors interfere in daily household activities, the behavioral interventions that

allow the caregiver to understand and thus master these behaviors are likely to be

extremely promising in reducing the perception of negative caregiver impact

(Welleford, Harkins & Taylor 1995). Thus caregiver reaction to these problem

behaviors is still another interesting area of study. The conceptual framework for the

present study comes out of this area of research. Several studies were found that

focused on the interaction between the caregiver and person with AD. In a study of

58 memory impaired individuals observed during caregiving episodes Burgner et al

(1992) found that several aspects of the person’s behavioral responses, including

agitated behaviors and self-care ability, were positively related to a variety of

caregiver behavioral approaches, including the caregivers calm and person-centered

behaviors. Calm, person-centered behaviors of caregiver decreased agitated

behaviors and increased self-care abilities. In another study, the complex nature of

feeding person with AD was explored by Ort and Phillips (1992) Persons with AD

judged by caregivers as not able to feed themselves were actually able to do so

under the right circumstances. With adequate caregiver support the person revealed

a hidden ability previously not realized. This capability indicated it is important that

caregivers recognize the difference between partial and total dependence and not


71

create excess disability by doing too much for the person with AD (Osborn & Marshall

1993). This area of research is of great importance because much difference exists

among caregivers in how they adapt to demands of caregiving.

One of the research suggested that caregiver variables are important

determinants of when the person with AD is institutionalized (Cohen et al 1993). AD

persons living with highly depressed caregivers exhibited increased frequency of

behavioral problems and agitation when compared with those with less stressed

caregivers. Caregiver’s level of distress was found to have a significant effect on the

course and symptoms of dementia (Dunkin & Anderson-Hanley 1998). Caregiver

inappropriate reaction to the problem behaviors may increase the frequency and

severity of problem behaviors, thus also increasing the impact from caregiving and

the outcome for the person with AD being able to stay out of nursing home/ or

institution. Teaching caregivers how their reaction will help to manage/treat problem

behaviors as the potential to avert or postpone institutionalization.

In a qualitative study of caregivers of persons with Alzheimer's disease by the

10/66 group (Shaji et al 2003) showed that the principal sources of caregiver strain

were Behavioral problems associated with the dementia syndrome, and incontinence.

Majority of the caregivers were young women, often daughter-in-law of persons

affected with dementia. Strain was exacerbated by the lack of supportive response by

local health services, and by lack of support and, sometimes, criticism from other

family members. Family conflict was commonly encountered. The majority of

caregivers experienced significant deterioration in their mental health.

In a recent study by Shaji et al (2009) of the prevalence of BPSD (Behavioural

& Psychological Symptoms of Dementia), 29 patients who were assigned DSM IV

diagnosis of dementia, Behavioural disturbances were extremely common. Twenty

eight (96.6%) patients had one or more of BPSD as assessed by BEHAVE-AD.

Prevalence of BPSD was very high and common in patients with Alzheimer’s disease

than patients with vascular dementia. They were rated as troubling to most

caregivers and causing more strain.


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Developing, testing, and translating nonpharmacological approaches to

manage disruptive behavioral symptoms are important public health priorities for

advancing better care of individuals with dementia (American Psychiatric Association

Work Group, 2007)

There is a dearth of controlled evidence for psychological interventions in

BPSD. Individualized music therapy, bright light treatment and specific behaviour

interventions have been found to improve certain troubling behavioural symptoms in

dementia, but more evidence is required in this area (Devanand & Lawlor, 2000).

Interventions for the carer in terms of boosting caregiver support, increasing ‘time for

self’ and providing carer education and training in the management of BPSD can be

effective in decreasing burden and mollifying its impact on the carer (Ostwald et al,

1999). Interventions with carers may not only decrease carer burden and improve the

tolerability of the particular symptom (Hepburn et al 2001) but can also have a

positive impact on patient behaviour (Marriott et al 2000) and possibly delay

institutionalization (Brodaty et al 1993; Teri, 1999).

8. Studies Related to Burnout & Caregiving

Caregiver burden has been associated to both caregiver and patient factors,

but little is known about their relationship to burnout. Burnout, viewed as the

exhaustion of physical or emotional strength as a result of prolonged stress or

frustration, was added to the mental health lexicon in the 1970s, and has been

detected in a wide variety of health care providers.

Burnout is chronic affective responses to stressful work conditions were there

are high levels of interpersonal contact (Shinn, 1982). Burnout is usually viewed as

having three dimensions, namely emotional exhaustion, depersonalization or

cynicism, and reduced personal accomplishment. Emotional exhaustion is the feeling

of being overextended and being depleted of one’s resources or exhaustion

(otherwise known as tedium) is a state of physical, emotional and mental exhaustion

caused by long-term involvement in demanding situations (Pines et al 1981).


73

Depersonalization represents a detached response towards work, whereas

reduced personal accomplishment refers to feelings of incompetence and lack of

achievement at work. It is worth mentioning that burnout research began in

caregiving and human services occupations in which work involved the presence of a

care recipient and a provider. Maslach Burnout Inventory (Maslach and Jackson,

1986), seeks to elicit a respondent’s level of burnout using three dimensions namely

emotional exhaustion, depersonalization, and personal accomplishment.

Burnout symptoms also can include recurrent bouts of flu, headaches, fatigue,

poor self-esteem, difficulty in interpersonal relationships, substance abuse, inability to

concentrate, rigidity, and tendency to blame clients for their problems (Cherniss,1980;

Pines & Maslach, 1978). Certain demographic variables, including age, marital status,

and gender also were found to be related to burnout (Maslach, 1982).

Anywhere from 70 to 80 percent of people with Alzheimer's disease receive

care at home (Alzheimer's Disease and Related Disorders Association, 1989). Being

a caregiver to a person who has Alzheimer's has been described ‘as living a 36-hour

day’ (Mace and Rabins, 1999) and, as such, the caregiver seems particularly prone

to burnout. Few caregivers receive training for this job and unfortunately caregivers

receive only minimum amounts of positive feedback.

In a Brazilian study by Truzzi et al (2008) investigating burnout correlations to

the sociodemographic and clinical variables of a sample of caregivers of Alzheimer’s

disease (AD) outpatients. AD patients (n=69) and their caregivers completed a

sociodemographic questionnaire, Maslach Burnout Inventory, Beck Depression and

Anxiety Inventories. Patients were administered the Mini Mental State Examination,

the Neuropsychiatric Inventory, Clinical Dementia Rating and the Functional Activities

Questionnaire. Burnout and each dimension (emotional exhaustion,

depersonalization, and reduced personal accomplishment) were correlated to

caregivers’ sociodemographic characteristics, burden of care, anxious and

depressive symptoms as well as to the patients’ behavioral, functional and cognitive

profile. Results revealed that majority of caregivers were middle-aged married


74

daughters, who had at least elementary education. Burnout was experienced by

6%..Emotional exhaustion was the most prevalent dimension in 47.8%, followed by

depersonalization 28.4%, and reduced personal accomplishment- 28.4%.Among all

burnout dimensions, emotional exhaustion was highly associated to all clinical

variables (p < 0.05). Caregivers who experienced emotional exhaustion also

exhibited higher levels of depersonalization and reduced personal accomplishment (p

< 0.05). The presence of depersonalization was associated significantly to higher

scores on the NPI, the BI (Burden Interview) and the emotional exhaustion dimension

(p < 0.05). Correlations among burnout dimensions and other variables showed that

emotional exhaustion was highly associated to burden of care and to depressive and

anxious symptoms in caregivers. Also, there was a high correlation between burden

of care and anxious symptoms in caregivers.

In a study by Almberg et al (2008) of fifty-two family caregivers for demented

elderly people were investigated for burden and burnout experiences. A structured

burden questionnaire and the Burnout Measure were used. Burnout is described in

relation to the caregiver's gender, age, family relationship and the demented person's

living place. Older wives and daughters-in-law also risked developing burnout.

Regression analysis showed that limitation in social life, poor health and a lack of

positive outlook on caring were the most important independent variables explaining

variance in burnout among caregivers having their demented elderly person living at

home and those having them in an institution.

Okabayashi et al (1999) in his study of primary caregivers attempted to extract

the factor structure of coping strategies and to examine their direct and indirect

effects on burnout. Eight hundred thirty four valid responses obtained from primary

caregivers of impaired persons aged 65 years old and over living in the community

were analyzed. The results of covariance structural analysis were as follows: Three

second order factors, including "Approach", and "Avoidance," and "Support seeking,"

were extracted. Five factors, "Keeping their own pace," "Positive acceptance of

caregiving role," "Diversion," "Informal support seeking," and "Formal support

seeking," were extracted as first order factors. "Keeping their own pace," directly


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decreased burnout and "Diversion" indirectly decreased burnout through caregiving

in involvement. "Informal support seeking" directly increased burnout and "Positive

acceptance of caregiving role" indirectly increased burnout through caregiving

involvement.

Lee & Lee (1999) tried to examine the predictors of burnout among informal

caregivers of older adults. One hundred thirty seven caregivers of who had provided

care to older adults over 60 years of age for more than one month were included in

the study. Most of the caregivers where white (91%) and female (78%). mean ages of

the caregivers were 64 years and 78% of them were married. Seventy percent of the

older adults suffered from Alzheimer and related disease. In this study, caregivers

reported that they experienced burnout once a month. The scores of emotional

exhaustion and reduced personal accomplishment of the caregivers were in the

moderate burnout range. To examine the predictors of burnout, discriminant analysis

was used. Caregivers were divided by two groups based on the sum of score (cutoff

point=6) on three dimensions of burnout after each dimension was categorized into

high(3), moderate(2), and low(1). Nine predictors were included in the analysis:

Caregiver's age, employment status, Instrumental Activities of Daily Living (IADL) of

the older adult, presence of dementia of the older adult, caregiver's empathy toward

the older adult(emotional and cognitive), and 3 coping strategies (negative, problem-

focused, cognitive reconstructioning). Caregivers who reported high burnout showed

higher cognitive empathy toward the adults than those who showed low burnout.

Caregivers who experienced high burnout used negative coping more often, and

cognitive reconstructioning coping and problem focused coping less often than their

counterparts. Wilks' Lambda was 78 indicating that their differences between the two

groups were significant. Cognitive empathy and cognitive reconstructioning coping

showed high standardized canonical discriminant function coefficients over .40.

Discriminant function with 9 predictors correctly classified 71% of the sample. In

conclusion, informal caregivers also experienced certain level of burnout. Cognitive

empathy and coping strategies predicted burnout experience of the caregivers.

Based on this study, nursing intervention to the informal caregivers to improve their


76

cognitive empathy toward the older adults and to modify their coping strategies in

way to reduce burnout experience can be applied. Further research to develop

effective nursing interventions for the purpose of reducing burnout experience by

modifying predictors suggested.

Cuijpers & Stam (2000) investigated the relationship between subjective

burden and objective burden among caregivers of patients with serious mental illness

in the Netherlands who were attending psychoeducational support groups. The study

used pretest data from an intervention study in which psychoeducational family

support groups in the Netherlands were evaluated. A total of 164 participants from 19

psychoeducational groups organized by nine community mental health centers

completed the Dutch translation of the Maslach Burnout Inventory and the

Involvement Evaluation Questionnaire. Regression analyses were conducted, with

elements of subjective burden as dependent variables and elements of objective

burden, demographic characteristics, and characteristics of the patient's disorder as

predictors. Results pointed out that burden in general and emotional exhaustion were

the aspects of subjective burden best predicted by objective burden. In two

regression models, objective burden together with the other predictors explained 57

percent and 54 percent of the variance in subjective burden. Two aspects of objective

burden-strain on the relationship with the patient and ability to cope with the patient's

behavior-were related to almost all the investigated aspects of subjective burden. In

this study strong evidence was found for the relationship between objective and

subjective burden and for the hypothesis that particular elements of objective burden

contribute more to subjective burden than others.

Elisabeth et al (2001) tried to identify which caregivers of stroke patients living

at home experience the highest levels of strain and are at risk of burn-out, and to

investigate how support for caregivers of stroke patients could best be organized, and

when this support should be offered. Caregivers of stroke patients were recruited in

four regions of the Netherlands. A total of 212 caregivers were interviewed. Multiple

stepwise regression analysis was performed to determine the effects of patient and

caregiver characteristics, resources, coping strategies and duration of the caregiver


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role on caregiver strain, mental well-being and vitality. Results pointed that the

majority of the caregivers were female spouses. Their mean age was 64 years, and

their socioeconomic status middle class. Stroke had occurred about 3.5 years ago on

average. The main outcome measures used were the Caregiver Strain Index, and

two scales of the Short Form-36 to measure caregivers’ mental well-being and

vitality. Severe cognitive, behavioural and emotional changes in the patient constitute

the main risk factors for caregiver burn-out. Women, younger caregivers and

caregivers in poor physical health were also identified as risk groups. Caregivers with

high perceived self-efficacy, satisfied with social support, and frequently using the

coping strategy confronting, experience less strain, higher mental well-being and

greater vitality. Duration of the caregiver role does not influence caregivers’ strain,

mental well-being or vitality. In Conclusion Women, younger caregivers, caregivers in

poor physical health, and caregivers of patients with severe changes were at risk of

burn-out. Support programmes should focus on self-efficacy, social support, and the

coping strategy confronting. No specific moment could be identified at which support

programmes should be offered.

Takanashi et al (2004) examined the relationship between family cohesion as

perceived by family caregivers, social support from other family members, relatives

living apart, friends and acquaintances, professionals, and burnout among family

caregivers for the Japanese impaired elderly, 941 primary caregivers of the impaired

elderly aged 65 and over living in the community were surveyed in 1996. Eight

hundred and sixteen valid responses from family caregivers were analyzed. The

degree of family cohesion perceived by family caregivers and actual result of support

from four different resources (other family members, relatives living apart, friends and

acquaintances, professionals) were measured. As the primary stressor, physical

disability, cognitive impairment of the elderly, and caregiving involvement were

included as independent variables and family caregivers and burnout as a dependent

variable, regression analysis was conducted with regard to the caregivers' age,

financial satisfaction and their relationships to the elderly as control variables. Family

cohesion perceived by family caregivers, actual support from other family members,


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relatives living apart, and professionals were significantly related to the family

caregivers' burnout. High level of family cohesion decreased family caregivers

burnout. However, actual support from other family members, relatives living apart,

and professionals, increased the family caregivers' burnout.

A study was designed by Okabayashi et al (2008) to clarify causal relations

between coping strategies and burnout in family caregivers of frail elders in Japan.

Baseline and 1-year follow-up interviews were conducted with 546 caregivers living in

suburban Tokyo. Using newly refined measures, five coping strategies of caregivers

(Keeping Their Own Pace, Positive Acceptance of Caregiving Role, Diversion,

Informal Support Seeking, and Formal Support Seeking), and caregiver burnout were

measured, as well as several confounding factors. After controlling for these

confounding factors, results of cross-lagged effects modeling showed that adoption

of a Diversion coping strategy decreased caregiver burnout, while increases in

burnout decreased caregiver Positive Acceptance of Caregiving Role. The beneficial

effect of an Adaptive Avoidance Coping strategy, Diversion, on caregiver mental

health was confirmed in this two-wave longitudinal study.

Friedman et al (2006) sought to determine whether participants in the Program

of All-Inclusive Care for the Elderly (PACE) with an informal caregiver have a higher

or lower risk of nursing home admission than those without caregivers. The authors

performed a secondary data analysis of 3,189 participants aged 55 years or older

who were enrolled in 11 PACE programs during the period from June 1, 1990

through June 30, 1998. Cox proportional hazard models determined whether having

any caregiver, as well as specific caregiver characteristics, such as either living

separately from the enrollee, being over the age of 75 years, providing personal care,

not reducing or quitting work to provide care, or not being a spouse, predicted time to

nursing home admission. Results showed that fewer than half of the participants

(49.4%) lived with a caregiver, and 12.4% had no caregiver. Individuals who lived

with their caregiver were frailer than either those who lived separately or those

without a caregiver. Frailty was measured in terms of functional and cognitive status,

incontinence, and multiple behavioral disturbances. The presence of a caregiver did


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not change the risk for institutionalization. None of the caregiver characteristics were

associated with a higher risk of nursing home admission. The implications were

unlike individuals in the general population, participants in PACE who lack an

informal caregiver are not at higher risk of institutionalization. Further research is

required to ascertain whether PACE's comprehensive formal services compensate

for the lack of informal caregiving in limiting the risk for institutionalization.

9. Studies related to coping Strategies in care giving roles

Coping is any conscious effort by an individual to manage or overcome a

stressful event (Holahan, and Moos, 1987). Coping strategies may be oriented

towards confronting and overcoming the stressor, or may entail efforts to reduce

tension by evading the problem. The type of coping strategies adopted may depend

on how the individual appraises the stressful event, their negative and positive affect,

personality differences and environmental factors, which may result in an enhanced

or decreased psychological adjustment. Adjustment is identified as psychological well

being, and for the purpose of the research presented includes depression, anxiety,

and stress. Recent development in this area have recognized the importance of

positive psychological states, and has highlighted the necessity of assessing both

positive and negative affect in relation to coping (Folkman, 1997; Folkman, and

Moskowitz, 2000).

Lazarus and Folkman’s (1984) cognitive theory of stress and coping originates

with the everyday appraisal and reappraisal of one’s transactions with one’s

environment. The appraisal process involves the immediate cognitive and physical

identification of the stress, the immediate reaction (primary appraisal), the evaluation

of the individual’s internal and external resources, and their availability (secondary

appraisal) (Lazarus and Launier, 1978). Appraisals are influenced by an individuals

beliefs, values, goals and emotions, and the event is understood in terms of the

personal significance it has for the individual (Stein et al 1997). This then determines

whether the individual feels threatened, challenged, or harmed. When a transaction


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is appraised as stressful, coping is required. Lazarus and Folkman (1984) identified

two types of coping: emotion-focused coping and problem-focused coping.

Emotion-focused coping attempts to regulate emotional distress and return to

normal social and physiological functioning. Whereas, problem focused-coping is

goal directed, and includes strategies such as decision-making and planning to

resolve conflicts or to manage the problem. Here either type of coping can lead to an

event outcome that may be favorable, unfavorable or involve no resolution at all.

Unfavorable outcomes or outcomes with no resolution do not alleviate distress and

require reappraisal and additional coping. In contrast, a favorable outcome results in

positive emotion, and the termination of any coping activity (Folkman, 1997).

Theories of coping have generally focused on the negative effects of stress and the

regulation of distress. Positive affect, defined as positively toned emotions including

mood, emotion or psychological state, have been largely omitted from most

contemporary theories of stress and coping (Lazarus, 2000).

Research undertaken by Folkman (1997) has identified the co-occurrence of

positive and negative psychological states. Folkman (1997) revealed that affect,

positive or negative, may influence appraisal of the stress-situation and psychological

well being. Similarly, Stein et al (1997) found that positive appraisals predicted

psychological well being and was significantly correlated with positive morale

whereas negative appraisals were associated with depression. Recognizing the need

for coping theory to be modified, Folkman (1997) revised the widely accepted model

of the cognitive theory of stress and coping, previously developed by Lazarus and

Folkman (1984) incorporating positive psychological states.

A recent meta-analysis found that certain coping processes appear to buffer

the deleterious impact of acute stress on health outcomes (Penley et al 2001).

Coping, as defined by Lazarus and Folkman (1984), consists of cognitive and

behavioral efforts to manage demands that exceed the resources of the person. The

current study examined the approach/avoidant and problem-focused/emotion-

focused coping paradigms, which have been well researched with respect to a wide


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array of health outcomes. Approach coping (APP) is generally characterized as active

attempts to deal with a stressor (e.g., strategizing, seeking social support, or

gathering additional information), while avoidant coping (AVD) involves emotionally

distancing oneself from a stressor (e.g., denial, escape, or disengagement). The

problem-focused coping process is best captured by the PPS subscale of APP, while

emotion-focused coping is largely synonymous with avoidant strategies (Folkman et

al 1986). Previous research suggests that higher proportions of APP versus AVD are

associated with better health in caregivers (Goode et al 1998; Kneebone & Martin

2003). Whereas several studies have reported that active coping techniques (e.g.,

problem solving, positive reappraisal, and support seeking) are associated with

greater self-reported health (Haleyet al 1987), research suggests that AVD is not

associated with long-term, physical health outcomes (Penley et al 2001; Smith et al

1990). Furthermore, problem solving, an approach-based strategy, was the only

strategy found to correlate positively with health outcomes in the case of an acute

stressor (Penley et al 2001).

Some studies have examined the coping efforts of caregivers and how these

relate to their well-being. Caregiver confidence in problem solving, ability to reframe

the caregiving problem, spiritual support, and reliance on extended family were

related to less burden, and passive avoidance of problems was related to higher

burden (Pratt, et al 1985). Quayhagen and Quayhagen (1988) reported that the

caregivers' problem-solving skills, help-seeking behaviors, and low self-blame were

associated with higher well-being for caregivers who are spouses, not daughters; and

use of wishful thinking was associated with lower well-being for the entire sample.

Passive coping styles have been associated with greater burden. Persons who

use an escape-avoidance type of coping are known to have more depression and

interpersonal conflicts (Gruetzner, 2001). Among caregivers with depressive

symptoms, 19% used antidepressants, 23% anti-anxiety drugs, and 2% sedative

hypnotics. African-American caregivers were less likely than Whites to be taking anti-

depressants (Sleath et al 2005). In a study by Kales et al (2004), use of herbal


82

products/supplements was found in 18% of elderly subjects with depression and/or

dementia and in 16% of their care givers.

Family caregivers of AD individuals used both problem-focused (thoughtful

problem solving and confrontatiional coping) and emotion-focused (i.e., seeking

social support, positive reappraisal, self-controlling, distancing) coping strategies

(Garity, 1997). Successful coping was related more to the characteristics of the

caregiver than the individual with dementia in a study by Szabo and Strang (1999).

Morano (2003) showed that appraisal of burden mediated the effects of caregiving

stress on somatic complaints and depression, and appraisal of satisfaction

moderated the effects of stress on personal gain and life satisfaction for caregivers.

Knight et al (2000) tried to explore the sociocultural stress and coping model

for mental health outcomes among African American caregivers in Southern

California. The sample comprised of 41 African American and 128 non-African

American caregivers. In this sample, African American caregivers reported lower

levels of burden but equal levels of depression and anxiety. In the structural equation

model, previous reports that African Americans' lower appraisal of caregiving as

burdensome resulted in lower levels of emotional distress were confirmed. However,

in this model, this pathway was counterbalanced by a tendency of African American

caregivers to use emotion-focused coping and, therefore, increase emotional

distress. African American caregivers were also younger and in poorer health, factors

which tend to increase both burden and emotional distress outcomes. As suggested

by the sociocultural stress and coping model, it was felt that the influences of ethnic

group variables on stress and coping processes are complex and multidirectional.

Caregivers of people with dementia (CGPD) frequently have anxiety

symptoms but little is known about the relationship of anxiety with coping strategies.

In a study by Cooper et al (2006) 126 people with Alzheimer's disease (AD) and their

family caregivers living in the community were recruited from local psychiatric

services, the voluntary sector and care homes. Sampling was designed to ensure

that the sample was epidemiologically representative in terms of dementia severity,


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gender and care setting. The anxiety subscale of the Hospital Anxiety and

Depression Scale (HADS) was used to measure anxiety and the Brief COPE to

measure coping strategies. Results showed that dysfunctional coping strategies and

depression appear to be the most important factors predicting caregiver anxiety. The

authors concluded that addressing coping strategies may be a helpful intervention for

managing caregiver anxiety.

Tan & Schneider (2009) attempted to gain better understanding of the

experiences of young adult-child caregivers, with the key focus being the use of

humor as a coping strategy in this caregiving circumstance. 6 young adult-child

caregivers of individuals with Alzheimer's disease were interviewed. Qualitative

analysis revealed a unique young adult-child caregiver experience in relation to

humor including an acknowledgment of 3 key determinants that must be considered if

humor is to be effective as a coping strategy, the identification of 4 factors that

influence humor use, and finally a description of the perceived benefits of humor.

These research findings highlight the potential for the use of humor to be

incorporated as a coping strategy for caregivers in the hope of preventing caregiver

burnout and optimizing patient care. In a study by Ashley & Kleinpeter (2002) a

sample of 63 spousal dementia caregivers was examined through the Orange and

Los Angeles Caregivers Resource Centers Subjects completed the Geriatric

Depression Scale and the Coping Strategy Indicator. Results indicated significant

gender differences in regard to both depression and coping strategies. Women were

significantly more depressed than men. Female caregivers sought more social

support and employed more avoidance strategies than did males. Additionally, there

was a significant negative correlation found between social support and depression,

and a significant positive correlation between avoidance strategies and depression.

The authors suggested increasing the level of social support and reducing the

level of avoidance strategies used among caregivers in an effort to improve their

quality of life.

Haley et al (1987) examined the stress and coping model to study predictors

of individual differences in caregiver adaptation. A total of 54 family caregivers of


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elderly dementia patients completed interviews and questionnaires assessing the

severity of patient impairment and caregiving stressors; caregiver appraisals, coping

responses, and social support and activity; and caregiver outcomes, including

depression, life satisfaction, and self-rated health. Correlational and regression

analyses supported the utility of the stress and coping model. Appraisal, coping

responses, and social support and activity were significant predictors of caregiver

outcome, even when severity of caregiving stressors was statistically controlled. The

importance of a multidimensional approach to assessing caregiver outcomes was

supported by regression analyses indicating that each caregiver outcome was

predicted by different patterns of stressors, appraisal, coping, and social support and

activity.

Melanie et al (1998) study tried to determine which cognitive and behavioral

coping strategies were associated with lower levels of depression; once these

strategies are identified, interventions can be established to educate these

caregivers. Thirty-two spousal caregivers participated in this study. Results of this

study indicate that problem-focused coping strategies were associated with a lesser

degree of depressive symptomatology, whereas most of the emotion-focused

strategies were associated with a greater degree of depressive symptomatology

among the sample of spousal caregivers.

Hooker et al (1994) investigated the personality factors and coping strategies

in a sample of spouse caregivers. Fifty spouse caregivers of patients diagnosed with

Alzheimer's disease or a related dementia completed the NEO-FFI; a personality

inventory designed to measure traits identifiedin the five-factor trait model, and a

revised measure of the Ways of Coping Checklist. Results from a series of

multivariate regressions showed that personality traits explained 60% of the variance

in emotion-focused coping, 30% of variance in problem-focused coping, and 15% of

variance associated with social support coping. Discussion focuses on the usefulness

of including personality characteristics of the caregiver in formulating models of the

caregiving coping process


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Neundorfer (1991) examined the effects of different coping patterns on the

physical health, depression, and anxiety experienced by 60 spousal caregivers of

persons with dementia, using Lazarus and Folkman's cognitive model of stress and

coping. In addition to coping, the model included the following predictors: severity of

the patient's memory and behavior problems, caregiver's appraisal of the

stressfulness of those problems, and caregiver's appraisal of their options for

managing caregiving. The predictors did not explain a significant amount of the

variance in caregivers' physical health, but they did explain 43% of the variance in

both depression and anxiety. The only coping pattern that added to the explanations

was Wishing-Emotive coping, which consisted of the coping subscales of escape-

avoidance, confrontive coping, and accepting responsibility. Caregivers' appraisal of

stress was a significant predictor of depression and anxiety, but neither the severity

of the patients' problems nor caregivers' appraisal of options was a significant

predictor of any of the health outcomes.

Haley et al (1996) studied 123 White and 74 Black family caregivers of

patients with AD and other progressive dementias to examine the differences in

caregiving distress and severity of depression. Black caregivers appraised patient

problems as less stressful and reported higher self-efficacy in managing caregiving

problems and less depression than did White caregivers. White and Black caregivers

also differed significantly in coping responses but not in social supports. Structural

equation analyses indicated that the correlational structure of the stress process was

similar in White and Black caregivers. Caregiving stressors and race did not affect

well-being through direct paths, but they were mediated by effects for appraisal,

social support and activity, and coping. Possible cultural mechanisms explaining the

better adjustment among Black caregivers are suggested.

Kaye & Robinson (2007) examined the spiritual perspectives of 17 caregiver

wives of dementia victims and 23 non caregiving wives of healthy adults were

compared in a pilot study using a convenience sample. Caregiver wives used

symbols such as God, and spiritual behaviors such as prayer and forgiveness as

coping mechanisms. Caregivers tended to share the problems and joys of living


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according to their spiritual belief more often than the non caregiver wives of healthy

adults. Caregivers also engaged in private prayer and sought spiritual guidance in

making decisions in their everyday life more often. The findings suggest that nursing

interventions with churches as a natural network for caregivers may be useful.

Prayer, forgiveness, and spiritual reading materials are resources that may be helpful

to some caregivers.

Spurlock (2005) examine the relationship between spiritual well-being and

caregiver burden in family caregivers of persons with Alzheimer's disease. A

descriptive, correlational research design was used, and a convenience sample of

150 caregivers was surveyed (71 African Americans, 77 Caucasians, and 2 other

caregivers). Descriptive statistics were used to examine selected caregiver

demographics. Statistical analysis included bivariate correlations using the Pearson

product-moment coefficient correlation. The study's research question was as

follows: What is the relationship between spiritual well-being and caregiver burden? It

was hypothesized that there would be an inverse relationship between the 2

variables. A statistically significance inverse relationship (R = –.493, P ≤.01) was

found to exist between the variables, thereby supporting the study's hypothesis.

Additional findings revealed significant differences in African American and

Caucasian caregiver's perception of spiritual well-being and caregiver burden.

Caregivers also reported frequent use of spiritual behaviors or practices such as

prayer. Findings implicate the need for further investigation and development of

culturally relevant caregiver intervention strategies and programs that incorporate

spirituality as a core component.

The studies discussed here are considered to provide a comprehensive

overview of coping among caregivers of people with dementia, but the coverage is

not exhaustive. There are both cross-sectional as well as longitudinal studies.

Cross-sectional studies

The most common research design used to consider the coping of those

caring for persons with dementia has been the cross-sectional design employing


87

generic coping questionnaires to assess coping. Neundorfer (1991), for example,

administered the Ways of Coping Checklist (Folkman, Lazarus, Dunkel-Schetter,

DeLongis, & Gruen, 1986) to 60 spousal caregivers of persons with a diagnosis of

probable Alzheimer's disease. The caregivers were asked to rate the extent to which

they used the strategies listed in stressful caregiving situations. Adjustment was

evaluated using measures of caregiver stress, health, depression, and anxiety.

Neundorfer found significant positive correlations between health problems,

depression, and anxiety, on the one hand, and emotion-focused coping characterized

as '"escape and avoidance' (wishing that the situation would go away), 'confrontive

coping' (angry confronting of the patient and the situation and letting one's feelings

out) and 'accepting responsibility' (blaming and criticizing oneself for problems)"

(Neundorfer, 1991, p. 264), on the other hand.

The findings of Pett, Caserta, Hutton, and Lund (1988) were similar to those of

Neundorfer (1991). In a total sample of 181, they found that co-residing, middle-aged

women caregivers to an Older demented relative' considered to be at high risk (i.e.

having demonstrated high levels of burden and low life satisfaction) were more likely

than those classified as low-risk to describe the use of 'avoidant-evasive coping' (e.g.

wishing a problem away, resigning oneself to one's fate) and a 'regressive coping

style' (e.g. overeating, drinking, getting angry, and taking it out on someone else).

Coping in this study was assessed using the Jaloweic Coping Scale (Jaloweic,

Murphy, & Powers, 1984). Similar results using this instrument have been found in a

more recent cross-sectional study by Brown, Sloman, Brown, and Mitchell (1995).

With a larger sample (240 caregivers to Alzheimer's patients), Pratt, Schmall,

Wright, and Cleland (1985) found significant negative associations between

'confidence in problem solving', 're-framing problems', 'seeking spiritual support',

'seeking family support', and a measure of caregiver burden, whereas 'passivity' was

positively associated with caregiver burden. Similar findings for 'passivity' were found

in a later study by this same research group (Pratt, Wright, & Schmall, 1987). Pratt

and colleagues used the F-COPE (Family Crisis Orientated Personal Evaluation

Scales) measure (McCubbin, Larsen, & Olsen, 1981) to assess coping in their


88

studies. This is a 30-item scale considered to identify eight particular coping

strategies for use by individuals or families in the face of problems.

Studies employing cross-sectional designs that include a comparison group

have also been utilized to investigate the relationship between caregiver coping and

adjustment. For instance, Haley et al. (1996) identified that the better adjustment of

black versus white caregivers was not a result of race per se, but was likely to relate

to the different use of coping strategies between the groups. In their combined

sample (N=197), they found 'avoidance coping' positively associated with depression

and negatively associated with a measure of life satisfaction. 'Approach coping'

(which includes 'logical analysis', 'positive re-appraisal', 'seeking guidance and

support', and 'taking problem-solving action') was positively related to life satisfaction

and inversely related to depression. A different coping instrument was used in this

study, the Coping Response Inventory (CRI) (Moos, 1988)

Taken together, the findings of the cross-sectional studies reviewed above and

of others of a similar design (e.g. Brashares & Cantanzaro, 1994; Haley, et al 1987;

Kramer, 1997; Lutzky & Knight, 1994; Quayhagen & Quayhagen, 1988), suggest that

emotion-focused strategies are more likely to lead to adjustment difficulties for

caregivers than problem-focused strategies and acceptance. Unfortunately, a major

drawback of cross-sectional studies is that they do not allow inferences to be made

about causality. Also, such research fails to consider the perspective of Lazarus and

Folkman, that stress, coping, and adaptation are dynamic processes. It follows from

this view that a temporal context is important in understanding coping. Different

coping strategies may be useful in dealing with stresses at different times as the

stress-coping encounter unfolds. Coping responses that are adaptive at one stage of

the transaction may be used less frequently or may have different effects if used at a

different phase of the transaction (Carver & Scheier, 1994).


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Longitudinal studies Vitaliano, et al (1991) assessed spousal caregivers of persons with a

diagnosis of primary degenerative dementia at two points in time, 15-18 months

apart. Their initial sample consisted of 95 caregivers, and they were able to follow up

79. They used a modified and extended version (Vitaliano et al 1985; Vitaliano, et al

1989) of the Ways of Coping Checklist (Folkman & Lazarus, 1980). They found that

only one significant coping strategy influenced initial and later caregiver burden.

'Counting one's blessings', a dimension of coping, including items such as 'compared

myself to others who were less fortunate', correlated negatively with baseline burden

and follow-up burden. Interestingly, given the results of the cross-sectional studies,

this dimension of coping might best be described as emotion-focused; that is, a

strategy that regulates feelings, as opposed to a problem-focused strategy.

Accordingly, it is at odds with the findings from the cross-sectional studies.

A study by Winslow (1997) undertook a secondary analysis of data from

another study to consider the effects of coping on spousal and adult child caregivers

of persons with Alzheimer's disease. A strength of the study was its large sample

size at baseline (N=452), but the information it provides is limited by the fact that only

one coping measure was considered, the 'management of meaning', a dimension of

Pearlin, Mullan, Semple, and Skaff's (1990) caregiver coping measure. This coping

construct is based on scale items such as 'how often do you remind yourself there

are others that are worse off? No effect for this variable was found on self-reported

physical health, anxiety, or yielding of role to institutionalization.

Goode, et al (1998) also considered the coping of caregivers of persons with

dementia, at two points in time. Their initial sample included 197 participants, 122 of

whom were reviewed 12 months later. Using the CRI, they found that the percentage

of 'approach coping' ('logical analysis', 'positive re-appraisal', 'seek guidance and

support', and 'take problem-solving action'), as opposed to avoidance coping

('cognitive avoidance', 'acceptance-resignation', 'seek alternative rewards' and

'emotional discharge'), provided an impact on caregiver adaptation, operationalized

as depression and physical health. Increases in approach coping were associated


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with decreased depression, and the initial percentage of approach coping was

associated with fewer changes in physical health.

Wright (1994) also employed a longitudinal design to consider coping in

spousal caregivers (N = 30) of those with Alzheimer's disease. The study included 34

participants (17 couples) of a similar age who were relatively healthy, as a

comparison group. The Jaloweic Coping Scale (Jaloweic et al 1984) was used to

measure coping initially and at follow-up 2 years later. The researchers considered

coping in respect of three follow-up categories for the caregivers, 'continued in home

caregiver', N = 12, 'widowed spouses', N = 8, and 'nursing home placement spouses',

N = 7. They found that coping strategies at baseline were not related to health

outcomes at follow-up for those continuing to care for a spouse with dementia at

home. For those who were faced with a change in their role over the 2 years from 'at

home' to 'institutional care', however, 'confrontive coping', that is, 'actively trying to

change the situation', was significantly associated with fewer depressed moods at

follow-up. For widowed spouses, a high use of 'palliative coping' (cognitive and stress

reducing strategies) at baseline was associated with higher baseline depressed

mood, an association that held at follow-up, by which time the effect of this coping

strategy was extended to include a relationship with poorer health. If we accept that

those with different caregiver outcomes, that is, 'continued caring', 'widower', or

'relinquishing care to an institution', are likely to have been facing different problems,

it follows that Wright's (1994) study supports the view that different coping strategies

may be differentially effective, depending on the nature of the patient/caregiver

circumstances. This hypothesis extends concerns from the temporal aspect of coping

to a view that, for a better understanding of coping and adaptation, the specific

problems and strategies used in respect of these problems by caregivers of persons

with dementia also need to be considered. This is consistent with the propositions of

the model of Lazarus and Folkman (1984).

Apart from Winslow (1997), all of the studies described so far have a common

failing in relation to the model of Lazarus and Folkman (1984). They fail to consider

that the coping strategies that may be adaptive in particular situations may be


91

dependent on the nature of the Stressor. The research has neglected the importance

of situation specificity. This relates to both the diversity of coping strategies that may

be employed by caregivers and what it is that caregivers have to cope with.


92

Tabl

e 5:

Stu

dies

inco

rpor

atin

g co

ping

met

hods

spe

cific

to c

areg

ivin

g


93

Among dementia caregivers, research on the relationship between problem-

focused coping and depression has yielded mixed results (Williamson & Schulz 1993;

Pruchno & Resch 1989; Powers et al 2002; Haley et al 1987; Vitaliano et al 1985;

Fingerman et al 1986).However, the relationship between emotion-focused strategies

and depression is much clearer, with escape-avoidance coping emerging as the best

predictor of depression in a variety of samples. Individuals who use escape-

avoidance coping attempt to cope with stressful circumstances by either avoiding or

ignoring the stressor, using wishful thinking, or engaging in behaviors not aimed at

directly changing the stressor (e.g., sleeping, eating, using drugs or alcohol). In a

recent meta-analytic review encompassing 10 studies and 897 participants, Penley et

al.2002 found that escape-avoidance coping was related to worsened mental health.

Among caregivers, escape-avoidance coping has been associated with reduced

psychological well-being (Garity 1997) and both decreased life satisfaction and

higher levels of burden (Wright et al 1991). As a whole, these studies indicate that

escape-avoidance coping is perhaps the most consistent predictor of psychiatric

morbidity and reduced well-being.

Although both patient problem behaviors and escape-avoidance coping are

robust predictors of caregiver depression, the question remains as to whether

escape-avoidance coping acts as a mediating link between patient problem

behaviors and caregiver depressive symptoms. To date, no studies have examined

the relationship between patient problem behaviors and escape-avoidance coping.

However, patient problem behaviors are theoretically linked with caregiver depressive

symptoms. Lazarus and Folkman (1984) suggest that unpredictable stressors are

more distressing than predictable stressors and further state that individuals often

believe they cannot control a stressor that is not predictable. As a result, individuals

are increasingly likely to use emotion focused coping processes such as escape-

avoidance in situations deemed to be unchangeable or outside his or her control.


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10. Studies related to social support and their influence on care giving Social support is one of most important factors in predicting the physical health

and well-being of everyone, ranging from childhood through older adults.

The social support and physical health are two very important factors that help

the overall well-being of the individual. A general theory that has been drawn from

many researchers over the past few decades postulates that social support

essentially predicts the outcome of physical and mental health for everyone. There

are six criteria of social support that researchers use to measure the level of overall

social support available for the specific person or situation (Cutrona, et al1986). First,

they would look at the amount of attachment provided from a lover or spouse.

Second, measuring the level of social integration that the individuals involved with, it

usually comes from a group of people or friends. Third, the assurance of worth from

others such as positive reinforcement that could inspire and boosts the self-esteem.

The fourth criterion is the reliable alliance support that are provided from others,

which means that the individual knows they can depend on receiving support from

family members whenever it was needed. Fifth, the guidance of assurances of

support given to the individual from a higher figure of person such as a teacher or

parent. The last criterion is the opportunity for nurturance, It means the person would

get some social enhancement by having children of their own and providing a

nurturing experience.

Social support can best be described as a meta construct, comprised of

several distinguishable theoretical constructs (Vaux, 1988). Three dimensions are

consistently identified (Barrera, 1986; House et al 1988; Vaux, 1988): (a) network

structure, that is, support network resources or social embeddedness; (b) functional

support, that is, supportive behaviors or enacted support; and (c) perceived social

support, that is, subjective appraisals of support and satisfaction with support.

Satisfaction with support has been suggested as a more effective component of

support than number and types of helpers in moderating the effect of caregiving

stressors on negative caregiver emotional and physical health outcomes (George,

1996; Lubben, 1988; Turner & Marino, 1994). Support does not exist in a vacuum but


95

is part of the "social fund" that people draw from when handling stressors (Thoits,

1995). The structure of the support network indicates the availability of individuals

who can respond to a person's need for support in specific situations.

The role of families in providing care to older adults with chronic disease

and/or disability is well established. Family and other informal caregivers including

friends and neighbors often provide care along a trajectory or caregiving career that

includes providing care to an older family member in the community, providing care in

a long-term-care (LTC) facility, and providing care at the end of life (EOL) (Gaugler,

2005; Montgomery & Kosloski, 2000; Pearlin & Aneshensel, 1994).

Social support varies along a host of dimensions, one being whether it is

informal or formal. Caregivers of community based older adults typically receive the

majority of their support from informal sources such as family and friends and/or

other unpaid helpers; they tend to use limited formal or paid support (Cox & Monk,

1993; Norgard & Rodgers, 1997; Wolff & Kasper, 2006). This situation is different in

LTC however, where staffs provide formal support that is important in the context of

adjusting to the LTC setting, family involvement, and family satisfaction (Friedemann

et al 1997; Whitlatch, et al 2001). Furthermore, it may be that the presence of formal

support provided by LTC staff changes the amount and/or type of informal support

that family caregivers of residents in LTC facilities receive from others.

The level of support that caregivers give to impaired relatives may depend on

the support they receive from those in their networks: conversely, the level of support

that caregivers receive from their networks may depend on how much care is

required by the health status of their impaired relative (Pearlin et al1995). These

interrelated dimensions of support have not been examined with equal fervor by

gerontologists. Much research on caregiver support describes the instrumental

support provided by secondary caregivers for the frail elderly rather than support

provided to the caregiver per se (Miller & McFall, 1991b; Stoller & Pugliesi, 1991;

Stone et al 1987). Spouses are likely to be the primary caregiver (when available)

and least likely to have secondary caregivers involved in care (Stone et al 1987;


96

Tennstedt et al 1989). Yet, little is known about the characteristics of persons who

are drawn on by spouse caregivers for support and about what kinds of support are

received.

Availability and Distribution of Support for Spouse Caregivers

Support for spouse caregivers occurs within the web of surrounding social

relationships and thus is subject to the influence of personal, economic, and social

forces that link the individual to larger social systems (Pearlin et al 1995; Seeman &

Berkman, 1988). Issues of gender permeate the support process for spouse

caregivers at all levels because the majority of caregivers for frail older persons are

women (Dwyer & Coward, 1992; Miller & Cafasso, 1992; Walker, 1992). Theories of

filial responsibility, hierarchical compensation, and task specificity detail the

importance of helper relationship in the availability and selection of who provides help

(Cantor, 1991; Hanson & Sauer, 1985; Litwak, 1985). Caregiving and social support

research also suggest patterned differences in the extensiveness and nature of

social support between African American and White caregivers (Silverstein & Waite,

1993; Taylor & Chatters, 1991).

Gender

Sociological, psychological, and feminist theories of gender differences in

support provide many reasons for the greater likelihood of women being helpers

(Stoller, 1990; Walker, 1992). These include the following: Providing care may be

central to women's identity; daughters have a special sense of attachment to their

mothers; societal support of women as helpers is reinforced by social ideologies,

devaluing of women's paid work, and inadequate government support. The support

literature suggests that older men and women have personal networks of different

size and composition in which male and female network members typically provide

different types of support (Akiyama et al 1996; Antonucci, 1990). These differences

have been mirrored in caregiving studies that note that men and women provide

different types of caregiving assistance (Horowitz, 1985; Matthews, 1996: Miller &

Cafasso, 1992; Stoller, 1990). In addition, there is some evidence that adult children

may be more likely to provide care to a parent of the same gender (Lee,et al 1993).


97

Thus, support relationships may be influenced by the gender of the caregiver and the

gender of the helper and also by the combination of gender of caregiver and helper

(Akiyama et al 1996).

Relationship of helper

The hierarchical compensatory model of support suggests a hierarchy of

helpers in order of familial closeness and intimacy to the frail older person: spouses,

when available, followed by adult children, other family members, and friends, and

lastly, formal services (Cantor & Little, 1985; Chatters, et al 1986; George, 1988).

This ordering does not specifically predict the role of adult children as secondary

caregivers in networks of spouse caregivers because adult children are most likely to

be caregivers of widowed parents. In older families, adult children are the most

frequently mentioned members of older persons' social networks (Antonucci &

Akiyama, 1987; Taylor, 1986). Given norms of filial responsibility in some Western

societies (Hamon & Blieszner, 1990;), we may expect that adult children will be the

most important sources of support to their parents, the spouse caregivers. These

caregiver selection models do not address the question of what kinds of help each

type of helper provides.

Race

Race is a marker variable that cannot he separated from socioeconomic,

cultural, and political factors (Miller et al 1996). Evidence is equivocal if race

differences in support remain when socioeconomic class is taken into account

(Smerglia et al 1988) Information about helpers of African American spouse

caregivers of persons with dementia is lacking in the research literature. This

caregiving configuration is relatively rare as older African Americans are significantly

less likely to be married than older Whites (Angel & Hogan, 1991). Older African

Americans reportedly have larger extended families and more multigenerational

contacts than older Whites (Markides & Mindel, 1987; Taylor, 1986). This premise,

however, has been challenged in recent years by research that focuses on variations

within race/ethnic groups, changing family structures, and socioeconomic conditions

(Burton & Dilworth-Anderson, 1991; Haley et al 1995; Minkler, et al 1992; Silverstein


98

& Waite, 1993; Smerglia et al 1988). More similarities than differences in caregiving

patterns by race have been observed hut few of these studies focus on social

support (Lawton et al 1992; Miller, et al 1995). Thus, traditional assumptions about

the expansive nature of social support in the African American extended family

structure and the role of adult children in such networks are in transition (Burton et al

1995; Silverstein & Waite, 1993).

Relationships between Support Networks and Support Functions

The empirical findings that satisfaction with support is an important buffer of

caregiver distress neglect to take into account the relationship between sources of

support and support functions (Barrera. 1986). Support functions are the types of

support, such as instrumental, emotional, or informational assistance, that an

individual or organization can provide (House et al 1988). The assumed relationship

between these two dimensions of support is that network structure influences access

to received functional support (Lin & Westcott, 1991; Thoits, 1995).

Applying this model to spousal caregiving, we argue that a crucial dynamic is

the specificity of the relationship between structure and function. In other words, the

benefits of social support are regulated by the forms of support, its sources, and the

fit with the types of problems confronting individuals (Jackson & Antonucci, 1992;

Pearlin et al 1995). A variety of specificity hypotheses in the social support and

caregiving literature highlight the relevance of matching between different support

components. These include matching between type of support and type of stressor

(Clipp & George, 1990; Cohen & McKay, 1984; Cutrona & Russell, 1990; Li, Seltzer,

& Greenberg, 1997), salience of social roles and type of distress (Krause & Borawski-

Clark, 1994; Wellington & Kessler, 1987), and type of caregiver burden and structure

of group providing support (Litwak, 1985; Messeri, et al 1993).

The task-specificity model of Litwak (1985) clarifies the links between support

networks and support functions. Members of a support network may provide different

functions of support, and substitution of tasks theoretically occurs among groups

whose structure most closely matches the tasks of the other (Litwak, 1985). Within


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informal groups, spouses and other household residents are believed to be best

suited for the provision of daily tasks; the extended family is best suited for temporary

short-term needs and emotional support; friends are best suited for companionship

and for peer-related advice. Formal organizations provide higher levels of technical

knowledge and more detailed division of labor typically applied to tasks that the

caregiver can no longer perform for reasons of poor health or burden (Penning,

1990). Ideally, specific measures of group structure and of support function (e.g.,

proximity and predictability) should be gathered. Messeri, et al (1993) argued,

however, that everyday terms for groups (i.e., children, friends, or neighbors) and for

tasks (i.e., emotional support and practical assistance) can be assumed to represent

distinct clusters of structural dimensions that represent the model.

High quality of informal relationships and presence of informal support is

related to lower caregiver depression (Cox, 1995) and less deterioration in emotional

health for African American caregivers, but not for Whites (Alten 1993).Support of

caregivers by others help to alleviate stress if the supporter is understanding and

empathic (Haley et al 1987). Highly stressed persons may not be able to benefit from

attempted social support of others as much as moderately stressed persons.

Caregivers need to have the opportunity to learn more effective ways of coping with

stress, In order to reduce anxiety and their reliance on treatments (Gruetzner 2001).

Burgio et al (2003.a) report that caregivers behavioural skills and effective self

management training program results in a lower frequency of patient behavioural

problems and helps to improve the caregivers mood. Stevens and Burgio (2000)

designed a caregiver intervention that teaches caregivers behavioural management

skills to address problem behaviours exhibited by individuals with AD, in addition to

problem solving strategies to increase pleasant activities for the caregiver.

Psychotherapy may be of some benefit in patients with early dementia but, due to

cognitive loss, some adaptation of the technique is required and the involvement of

carers is often necessary. Cognitive-behavioural family intervention can have

significant benefits in carers of patients with dementia and has a positive impact on

patient behavior.


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Okabayashi et al (2004) tried to examine the main effects of four kinds of

social support from friends (nursing, helping chores, lending money, and emotional

support) and personal control on life satisfaction among the Japanese elderly and

their stress-buffering effects on the detrimental effects of caregiving experience. 300

people aged 65 or over, were selected through a multi-stage sampling method from

the electoral register of an urban city in Tokyo, were mail surveyed in October, 2001,

and 175 valid responses were obtained. 159 responses with none missing consisting

of 16 caregivers who cared for someone in their own family and 143 non-caregivers

were analyzed. Analyses of covariance, which used life satisfaction as a dependent

variable, whether the elderly cared for some family member or not, social supports

from friends, and personal control as independent variables, and sex, age, physical

health, and economic situation among the elderly, whether they have a spouse or

not, and whether they have children or not as covariates, were conducted. The

results were: Caregivers showed lower life satisfaction than non-caregivers did.

Higher instrumental support such as helping chores and higher emotional support

from friends showed higher life satisfaction. Higher personal control showed higher

life satisfaction. The conclusion is that instrumental and emotional supports from

friends and personal control have beneficial effects on mental health among the

Japanese elderly, though they are not able to buffer the detrimental effects of

caregiving experience.

Chun et al (2004) examined the effects of acculturation on social support using

three different types of social support measures: 1) the amount of instrumental and

emotional supports; 2) the quality of instrumental and emotional supports; and 3) the

amount of formal supports. This study also investigated the mediator effects of these

social supports on the relationship between the caregiver burden and caregiver

depression. The sample consisted of 87 Korean-American and 83 Korean primary

family caregivers to non-institutionalized elderly with functional and/or cognitive

impairment. The results of the path analysis of this study indicated that acculturation

measured by filial piety value, English proficiency, and the practice of rituals affected

the amount of emotional support, and filial piety value affected the amount of formal


101

support utilization among Korean-American caregivers. However, the mediator

effects of any of the social support measures were not found in Korean-American

sample. On the other hand, filial piety value affected formal support utilization and

formal support utilization mediated the effects of caregiver burden to caregiver

depression among Korean caregivers. Important practice and policy implications

were suggested based on the findings.

Miller & Guo (2000) analyzes the value of simultaneously taking helper and

caregiver characteristics into account when examining social support received by

spouse caregivers of persons with dementia. This study questions whether sources

and types of received support vary by the gender and relationship of the helper

and/or by the caregiver's race and gender. 210 respondents were recruited by

referrals from Alzheimer’s clinics, composed of 21 African American men, 55 White

men, 52 African American women, and 82 White women. Results indicate that helper

and caregiver characteristics interact in complex ways. White male caregivers were

more likely to receive emotional support from adult children and to receive practical

assistance from formal sources compared with other types of support and to other

race-gender caregiver groups. Description of social status characteristics of

caregivers as determinants of their social network may be less fruitful in

understanding the benefits of social support than a focus on which helpers assist with

what kinds of task for which groups of caregivers.

Social support has been positively correlated with well-being and physical and

emotional health of stroke survivor caregivers (Grant et al., 2006; King et al 2002; Sit

et al, 2004; Steiner et al., 2008), although some researchers found no direct effect on

health per se (Grant et al 2001; Gräsel et al 2005; Raina et al 2004). Similarly,

satisfaction with emotional support was associated with vitality and decreased burden

(Van den Heuval et al 2001). Support is most often provided informally by family and

friends (Singh & Cameron, 2005; Ski & O'Connell, 2007). Caregivers express a need

for physical and emotional support (Bakas et al 2002; Dorsey & Vaca, 1998; Kerr &

Smith, 2001; Moore et al 2002). Yet, caregivers tend to perceive fewer available

persons in their social network than are needed (Sit et al 2004). Difficulty in


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accessing assistance during the critical first 6 months after stroke has been reported

(Teel et al., 2001). Steiner et al. (2008) found that instrumental and emotional help

diminished during the 12 months after stroke. Family relationships tend to erode after

stroke (Anderson et al 1995; King et al 2002), and ineffective family functioning has

been associated with negative outcomes in the psychosocial well-being of caregivers

(Clark, et al., 2004; Evans et al 1992).

Clay et al (2004) in a multi component intervention aimed at increasing social

support for spouse caregivers developed at the NYU Silberstein Aging and Dementia

Research Center to address their psychosocial needs. In this randomized, controlled

trial, participants in the intervention group received counseling sessions, agreed to

join support groups, and had continued access to counselors, while participants in

the control group received usual services offered by the center. Recruitment

consisted of two waves, and participants were followed longitudinally for up to 13

years. After adjusting for caregiver gender and patient age, Kaplan-Meier survival

analysis revealed a significant difference in the median time from study entry to NH

placement for the treatment and control groups. Specifically, individuals in the

intervention group were placed in a NH 1.7 years later than the control group. This

difference was markedly larger for the first wave, and the proportion of individuals NH

placed to date was also larger for the first wave (61.4% vs. 38.7%), p < .0001.

Additional Cox Proportional Hazards models were used to identify time-dependent

mediators. Satisfaction with social support, reaction to memory and behavioral

problems, and depression each mediated the direct effect of the intervention on NH

placement. The long-term effectiveness of this psychosocial intervention is beneficial

to caregivers and cost saving in terms of delaying NH placement.

To conclude, social support stems from social interactions and networks of

relationships that are intended to strengthen the well-being of their members.

Previous research also suggests that social support and social integration may

provide health and survival benefits to older adults by strengthening coping and

recovery when ill or via biological mechanisms that protect against illness. Both the

structure and the quality of social connections, which are thought to contribute to


103

health, have been explored. Social networks can be uniquely sub defined by social

roles or categories (e.g., children, friends, family), and each role or category may

yield different functional resources and effects on health (Glass et al 1997).

Functional resources that may affect health include the provision and perceived

adequacy of (1) emotional support, such as feeling understood by a confidant or

close to another person; (2) instrumental support, such as the provision of financial

assistance; or (3) informational support, such as providing feedback to help one

accomplish one's goals (Seeman & Berkman 1988) The emotional function of social

relations may have a stronger relationship with general health status, depending on

the structure, size, or identity of the social relation in question (e.g., the presence of

offspring in one's life).( Melchior et al 2003) Cross-sectional and prospective data

suggest that social disconnection-as assessed by the absence of social relations or

social support, or by perceived dissatisfaction with one's social support, rather than

the identity of the network members per se-predicts mortality.

11. Overview of caregiver intervention research

Although anecdotal reports of early intervention efforts were generally positive,

the first critical reviews of the literature were considerably more sobering. Toseland

and Rossiter’s (1989) early review of 29 studies concluded that time-limited

psychoeducational interventions have only modest therapeutic benefits as measured

by global ratings of well-being, mood, stress, psychological status, and caregiving

burden. Focusing exclusively on interventions aimed at alleviating caregiver distress,

Knight et al (1993) concluded that individual psychosocial interventions and respite

programmes are moderately effective, though psychosocial interventions with groups

are less effective. Zarit and Teri (1992), in describing the available intervention

literature as the ‘first generation’ of studies, pointed out those expectations had been

overly optimistic; conversely, some intervention effects may have been

underestimated because of methodological limitations of the studies (Zarit and

Toseland, 1989).

Focusing on specific treatment components, Bourgeois et al (1996) organized

their review of the literature around six broad categories: support groups, individual


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and family counseling, case management, respite and day care services, skills

training, and various combinations of these strategies. Several general conclusions

were derived from their synopsis of the literature. First the complexity and rigor of

intervention studies continues to improve with an increasing emphasis on

randomized designs. Secondly, the literature on the whole supports the conclusion

that more is better: multiple-component interventions that blanket caregivers with a

diversity of services and supports, hoping that a combination of components will have

impact on a caregiver’s unique needs, tend to generate larger effects than narrowly

focused interventions (Mittleman et al 2004). Similarly, single component

interventions with higher intensity (frequency & duration) also have a greater positive

impact on the caregiver than similar interventions with lower intensity.

Given the complexity of the caregiving experiences, and variability in

caregivers’ cultural context and resources, and the variety of outcomes examined, we

should not be surprised to find that more recent reviews of the caregiving intervention

literature also have been unable to identify a ‘silver bullet’ solution to alleviating

caregiver distress (Dunkin & Anderson-Haley, 1998; Kennet et al 2000; Roberts et al

2000; Schulz et al 2000). There is no single easily implemented and consistently

effective method for ameliorating the stresses of caregiving. This is particularly true

when considering racial and ethnic diversity. It is overly simplistic to think that

interventions that are successful with caregivers of one particular ethnic or cultural

background will be equally effective with those from very different circumstances, as

medical anthropologists such as Kleinman (1980) and Hinton et al (1999) have

noted. Thus, the literature suggests the need to develop a high-intensity intervention

with multiple components that is targeted to individuals who might benefit most from

such an intervention, with appropriate modifications to maximize its relevance to

subgroups of racial/ethnic minority caregivers (Gallagher-Thompson et al 2000).

In a review of 41 randomized clinical trials published between 1999 and 2005,

Schulz et al (2005) noted that, generally, studies included a mix of generations (e.g.,

spouses and adult children) and used multiple-component interventions. Most of

these studies focused on caregiver outcomes, but they often excluded or had very


105

limited care recipient outcome measures. Other limitations noted by the authors

include unequal attrition rates among treatment groups, inadequate information on

treatment implementation, and not adhering to randomized clinical trial standards

regarding blinding. Studies often lacked power to detect low to medium effect sizes;

however, consistently significant outcomes included decreased caregiver depression,

burden, and anxiety, and decreased care recipient behavioural problems.

Since, the review by Schulz et al (2005), a few randomized clinical trial studies

has been published. Beauchamp et al (2005) conducted an innovative technology-

based study using an internet-based interactive multimedia intervention for family

caregivers in the workforce (76% adult child caregivers). Participants in the treatment

group reported decreased levels of depression, anxiety, stress, and strain, as well as

increased self-efficacy, intent to seek support, and caregiver gain. Similar outcomes

are reported in a study in which healthcare professionals (e.g., master’s-level

counselors, social workers) currently working with community-dwelling older adults

were trained to educate caregivers about dealing with mood and behavioural

problems (Teri et al 2005). Caregivers reported decreases in depression, burden,

and reactivity to behavior problems, while care recipients had a decrease in severity

and frequency of behavior problems (as measured by caregiver reports and clinician

ratings) and an increase in quality of life (as measured by care recipient and

caregiver reports). Teri and colleagues note that this is one of the few studies that

have successfully incorporated evidence-based caregiver interventions in a

community setting. Both of these studies tracked treatment delivery by the amount of

participant exposure to the intervention (e.g., amount of time or number of sessions).

In another study, Roth et al. (2005) explored the effects of an intervention that

targeted social support resources, a topic in need of more study. As a result of

counseling intervention (two individual sessions, four family sessions, a support

group, and ad hoc phone counseling), spousal caregivers made better use of existing

support systems, resulting in increases in objective and subjective measures of

support. Treatment implementation was not addressed in this study.


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In 1995, in the United States, the National Institute on Aging and the National

Institute of Nursing Research funded a multi-site cooperative agreement to develop

caregiver interventions. This cooperative agreement is known as Resources for

Enhancing Alzheimer’s Caregiver Health (REACH). These studies focused on the

development of skill-training interventions to help family caregivers of Alzheimer’s

patients reduce the burden and distress associated with caregiving. They addressed

methodological issues and racial/ethnic and gender differences in treatment

outcome. Detailed treatment manuals were created for interventions, and

interventionists were certified on procedures to ensure consistency of treatment

delivery. The REACH projects included procedures and measures to track treatment

implementation, including delivery, receipt, and enactment.

Detailed analyses of these data suggested that specific components of the

REACH interventions might be efficacious in improving caregiver outcomes.

The interventions included:

1. Individual information and support strategies

2. Group support and family systems therapy

3. Psycho educational and skill-based training approaches

4. Home-based environmental interventions

5. Enhanced technology support systems (Telephone-linked computers)

Because different interventions were used at each site, specific outcomes

differed by site. However, a meta-analysis allowed some general conclusions (Schulz

et al 2000). The project concluded that active interventions were superior to control

conditions in reducing caregiver burden. Women and people with a high-school

education or lower who were in active interventions reported reduced burden, and

Hispanic/Latino caregivers, non spouse caregivers, and caregivers with less than

high-school education reported lower depression than their counterparts in the

control conditions (Schulz et al 2003).

Built upon the findings of the original REACH project (REACH I), REACH II

was funded in 2001 to refine and test a multiple-component psychosocial behavioural

intervention to reduce burden and depression among family caregivers of individuals


107

with Alzheimer’s disease or related disorders. REACH II were to identify and reduce

modifiable risk factors among diverse family caregivers of patients with Alzheimer’s

disease or a related disorder, enhance the quality of care of the care recipients, and

enhance the well-being of the caregivers. The REACH II intervention sought to

increase caregiver knowledge, skills and well-being while enhancing support to the

caregiver. The intervention process involved administering a risk appraisal,

prioritizing the risk areas, and them using a stepped intervention approach that

addressed risk in multiple domains. Interventions included:

1. Risk assessment

2. Education (information on Alzheimer’s disease and dementia, caregiving,

home safety, and caregiver health)

3. A caregiver network (computer telephone integration system or CTIS; this

system provided access to resources, social support, information and

educational materials, and respite)

4. Social support (support groups reached via CTIS)

5. Behaviour management skills training (i.e., behavioural prescriptions)

6. Physical and emotional well-being (stress reduction and relaxation techniques

such as signal breath, soothing music, and stretching, as well as strategies for

managing mood and increasing pleasant events).

Results from the clinical trial showed significantly greater improvements in

quality of life and depression in the intervention group. These results were true for

African American, Caucasian, and Hispanic sample (Bells, Burgio & REACH

investigators, 2006).

Current issues in Alzheimer’s disease caregiving research

The Alzheimer’s disease caregiving literature has reached a level of maturity

wherein special issues, complications, and needs in future research can be identified.

Moreover, because the literature is no longer in its infancy, the bar has been raised

for caregiver intervention studies to be considered methodologically adequate. The

following sections outline the current issues in caregiver intervention research.


108

Care recipient outcome measures More comprehensive care recipient outcome measures need to be included.

Specifically, in addition to the typical care recipient measures of activities of daily

living and instrumental activities of daily living (ADL/IADL), memory and behavioural

problems, and rates of institutionalization, researchers should include measures of

mood and quality of life. Researchers have avoided measures requiring care

recipient self-report because of an assumption that self-reports from cognitively

impaired individuals are rarely valid. However, researchers have found that

individuals with Alzheimer’s disease can give valid and reliable self-reports with mini-

mental state evaluation (MMSE) scores as low as 15 (Fisher et al, 2006, reports of

pain; Logsdon et al 2002, quality of life). Simmons et al (1997) provide an objective

method for identifying nursing home residents capable of accurate report, who would

be candidates for satisfaction interviews based on information in Minimal Data Set,

which is readily available in nursing homes. Although a sizable proportion of

Alzheimer’s disease patients have moderate to severe impairment (e.g., MMSE

scores lower than 15), investigators are able to obtain usable care recipient self-

report data on a proportionof these individuals.

A fine example of using care recipient self-reports can be found in Teri et al

(2005). These investigators used the Quality of Life in Alzheimer’s disease measure

(QOL-AD) as a major care recipient outcome variable. The QOL-AD is a 13-item

measure designed for individuals with memory-impaired older adults. The results of

the study showed that care recipients in the intervention group reported improved

quality of life after training, compared with a routine medical care control.

Racial and ethnic considerations

Caregiving researchers have become more sensitive to possible racial and

ethnic differences in Alzheimer’s caregiving and a substantial body of literature has

catalogued these differences (Schulz et al 2005). Caregiver intervention studies have

begun to investigate race, with some of the REACH I sites focusing on African

American/Caucasian (Burgio et al., 2003a) and Hispanic/Caucasian differences

(Gallagher-Thompson et al., 2003). REACH II included equal numbers of Hispanic,


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African American, and Caucasian caregivers in this multi-site clinical trial.

Nevertheless, we have found only one published report showing differential

responsivity to intervention by caregiver race (Burgio et al 2003a). In this study,

African American caregivers appeared to respond better to an interventionist visiting

their home and teaching caregiving skills in a one-to-one interaction. Conversely,

Caucasian caregivers had better outcomes when the materials were posted to them

and intervention contacts were made over the phone.

An important issue frequently discussed among caregiver intervention

researchers, but never examined systematically, is that of ‘race matching’.

Specifically, are these differences in attrition or treatment outcome depending on

whether the interventionist is of the same or different race as the participant? We are

aware of no data addressing this question in the Alzheimer’s disease literature.

However, there are data in the psychotherapy literature on the variables of drop-out

and attendance at sessions. Although some research indicates that race matching is

related to less premature drop-out and attendance at more sessions (Maramba &

Hall, 2002; Sue, 1998; Sue et al 1991), other studies did not find these relations

(Murphy et al 2004; Sterling et al 1998). Although the findings are still somewhat

mixed, there appears to be a growing consensus that there is no relation between

race matching and treatment outcome in psychotherapy (Maramba & Hall, 2002; Sue

1998).

It is unknown whether or not the findings from the psychotherapy literature can

be applied to interventionists working with Alzheimer’s caregivers. It would appear to

us that the nature of the relationship between therapist and client is often different

from that between interventionist and caregiver. Whereas many caregiver

interventions involve an interventionist teaching various skills to the caregiver, the

typical therapist-client relationship is more ‘intimate’.

Until this issue can be examined empirically, there are available strategies to

address race matching in caregiver intervention research. One possibility is to use

intervention teams that include individuals of different racial or ethnic backgrounds.


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Another option is to allow caregivers to choose between equally trained therapists of

different racial or ethnic backgrounds, although these strategies can be difficult to

use logistically and may not be feasible. The latter option could also be questioned

on methodological grounds. To summarize, in our review of caregiving literature, race

matching has not been used formally. However, it is our opinion that these issues can

affect outcome, particularly in geographical areas with a history of racial conflict. At

the very least, we suggest that data be gathered on race of interventionist and

caregiver. If the study is adequately powered to detect any difference, these data

should be examined in a secondary analysis. Most preferable would be to conduct a

study focusing on the possible influence of interventionist and caregiver race/ethnicity

on outcome.

Strength-based interventions

The majority of caregiver intervention, research has been influenced by the

stress process model (Lazarus & Folkman, 1984). Most outcome measures have

focused on appraisal of problem situations (e.g., behavioural burden, depression,

anxiety) and coping styles (e.g., problem-focused coping, emotion-focused coping).

Susan Folkman has published a revised stress process model (Folkman, 1997) that

incorporates ‘meaning-based coping’. In this model, Folkman acknowledges that

caregiving can result in positive emotions. Moreover, caregiver acknowledgement of

positive aspects of caregiving, positive reappraisal, and spiritual beliefs can serve as

moderators of the impact of negative event outcome. This new conceptualization

presents two issues very relevant to caregiving research. Firstly, most dementia

caregiving studies have failed to measure such constructs as positive aspects of

caregiving (Tarlow et al 2004), caregiver ‘powerfulness’ (Hagen et al 2003), or

positive affect (Watson et al 1988); thus, they measure the effects of interventions as

only half of the picture. In other words, interventions in which efficacy have been

measured only by decreases in depression, burden, and anxiety might conceivably

have detected strong effects on positive emotions or powerfulness. Secondly, except

for multiple-component studies that include pleasant events training, no interventions

for dementia caregivers at this time have employed treatment components targeted


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directly at increasing positive emotions, such as psychotherapy focused on meaning

(Greenstein & Breitbart, 2000), dignity therapy (Chochinov et al 2005), or legacy

training (Allen et al 2005).

Researchers and clinicians are beginning to add strength-based components

such as those listed in Folkman’s revised stress and coping model (e.g., meaning-

based coping strategies of positive reappraisal, revised goals, and spiritual beliefs) to

interventions in other areas of research. For example, Greenstein and Breibart (2000)

have used ‘meaning-centered’ group psychotherapy for palliative care inpatients with

advanced cancer. Therapy sessions focus on topics such as generating meaning,

reframing daily experience from that of dying to that of living, and life review. This

intervention has also been shown to decrease depression among palliative care

recipients (Nelson et al 2002). A second therapeutic approach incorporating strength-

based components and used more broadly is ‘dignity therapy’, developed by

Chochinov and colleagues (2004, 2005). The treatment is delivered individually to

terminally ill inpatients and those receiving home-based palliative care services with a

variety of medical etiologies. Treatment consists of an audio taped semi structured

interview involving life review. Interviews are transcribed and then given to the patient

to share with family members. The results have shown that dignity therapy is

effective in reducing physical suffering and depressive symptoms and increasing the

will to live. Moreover, patients’ beliefs that the interviews would be helpful to their

family members were associated with perceptions that life was more meaningful. We

recommend that future studies include strength-based treatment components and

mix of measures assessing both negative and positive emotions (REACH II).

Clinical significance

Although it is necessary for investigators to show statistically significant

change due to their intervention, there is a growing consensus that it is no longer

sufficient for interventions to show statistical significance alone. With adequate

statistical power, significance can be achieved by a change of only a few points on a

scale encompassing a large range of scores, although it might be statistically

significant, the improvement might not and often does not change the caregiver’s


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day-to-day life in any meaningful way. Clinical significance means that the

intervention has made a meaningful change in the caregiver’s life (Schulz et al.,

2002). There are several methods of addressing clinical significance. One strategy is

to measure symptomology on a scale such as the Center for Epidemiologic Studies

Depression Scale (CES-D). There is a cut off of 16 on the CES-D that suggests

clinical depression. An intervention that results in reduced symptomology, such that a

majority of the scores move from over 16 to 16 or below, can be considered clinically

significant because it moved a majority of the caregivers out of the clinical depression

category.

Another method is to assess social validity. For example, a caregiver can be

videotaped interacting with a care recipient before and after treatment. If a panel of

mental health professionals and caregivers agree that the post-treatment videotapes

show that the caregiver’s interactions are ‘calmer’ or display less anxiety or anger, it

can be argued that the intervention brought about a socially validated change.

A promising and easy-to-understand measure of clinical significance is termed

‘number needed to treat’ (NNT; Kraemer & Kupfer, 2005). This measure is frequently

used in clinical medicine research, but to our knowledge has not been used in

psychosocial intervention research, despite its clear relevance. Basically, NNT

determines the number of clients that would need to be treated before the occurrence

of one treatment success. This is best understood from an example. Consider a trial

comparing psycho education to a control condition for reducing depression in

Alzheimer’s disease caregivers. A dichotomous criterion is then set to define a

success. For example, a success could be a CES-D score that is one-half of a

standard deviation lower after intervention (or at a time 2 assessment in a control

group). Another possible outcome could be placement in a nursing home. The

researcher then counts the number who reached the criterion in the intervention and

control groups. If say, 8.6 percent of the participants in the intervention group and 7

percent of the control group participants reduced their CES-D score at least one-half

of a standard deviation, then NNT would be:

1/ (0.086 – 0.07) = 63


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This tells the reader that one would need to treat 63 caregivers in order to

successfully reduce one caregiver’s depression in a clinically significant way.

This is an extreme example showing the results of a less than potent

intervention. There are many factors to consider when using NNT; the definition of a

success, the possible side effects of the intervention, and so on. For example, what if

the data gave NNT=5 (In other words, one would need to treat five caregivers before

one success was found) Normally, this would be considered a good NNT. However,

what if the intervention were skills training plus an anxiolytic. Anxiolytics can result in

falls and confusion in older caregiver; they can also be addictive. In this situation

NNT=5 might be considered inadequate, but perhaps NNT=2 would be considered

worth the risk when one considers the potential gain.

Although NNT carries with it its own set of complications, we believe that it is

the most informative and intuitive measure of clinical significance. We recommend

that researchers conducting psychosocial intervention research consider using NNT

(REACH II).

Use of attention control groups

Over the past 20 years, caregiver interventions have become increasingly

complex and treatment sessions have increased in duration (e.g., from a simple 3-

hour group session in earlier studies to twelve 1-hour in-home sessions in the

REACH II project). Various control or comparison groups have been used; however,

the least used but most informative control group is an attention control group. A

number of dementia experts and an increasing number of National Institutes of

Health Initial review groups (IRGs) have posited a simple and obvious question.

Considering that Alzheimer’s caregivers are often isolated from human

companionship, how can researchers know that it is their intervention that is

responsible for therapeutic change and not the mere presence of another individual

providing one-to-one attention? We could find only one study that compared a multi-

component intervention to an attention control group (Bourgeois et al 2002). This


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study found therapeutic changes in the intervention group that went beyond any

effects due to attention.

There are both logistical and ethical issues involved with attention control.

Most problematic is devising sessions that offer face validity. In the Bourgeois et al.,

study (2002), the researchers conducted ‘friendly visits’, in which research staff would

visit the home and talk with the caregiver about their week using ‘empathic listening’.

Empathic listening involves responding to the caregivers in a sympathetic manner

while providing no directions for solving problems. However, this procedure obviously

can present ethical dilemmas. If the caregiver reports a behavior that places either

the caregiver or care recipient in danger (e.g., wandering or access to a loaded

handgun), these events cannot be ignored. One procedure used in the Bourgeois et

al study (2002) was to hand the caregiver brief, non-tailored, written protocols that

provided suggestions for a specific emergent problem. It is our recommendation that

whenever possible, future intervention studies should compare their intervention with

attention control conditions (REACH II).

Treatment implementation

The sine qua non of care giver intervention research - in fact, of any

intervention research - is the measurement of treatment implementation (Burgio et al

2001). The term ‘treatment implementation’ refers to a class of strategies used to

document and assess the induction of individual treatment components. TI

(Treatment Implementation) strategies can be classified according to three aspects of

intervention: delivery, receipt, and enactment. Treatment delivery involves the activity

of the interventionist, and specifically his or her ability to present the intervention to

the client as intended. The focus is on the interventionist’s therapeutic skills. Did the

interventionist deliver all the components described in the treatment manual? Of

equal importance, did the interventionist exclude therapeutic components associated

with other forms of intervention? For example, did elements of reality therapy creep

into a protocol intended to deliver reminiscence therapy? One method for assessing

treatment delivery is to audio-or videotape treatment sessions and obtain


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independent checklist ratings of whether critical components were observed and,

conversely, whether any ‘extraneous’ treatment components were observed.

Treatment receipt refers to the extent to which a client actually received the

intended treatment. This is often defined as the client’s mastery of concepts and/or

skill development. Treatment receipt can be assessed by paper-and-pen surveys or

questionnaires measuring skill level. Depending on the intervention used, the client

might be asked to demonstrate skills so that they can be evaluated for inclusion of

the correct components and accuracy of skill applications. For example, a client

receiving treatment in dealing with distressing situations could be asked to use

problem-solving steps to solve a sample problem.

Treatment enactment is the degree to which a client demonstrates changes

and therapeutic behaviors related to the intervention in the natural environment. Do

the clients use the components (e.g., mnemonic techniques) throughout the day to

improve their memory performance? Sometimes this type of data can be gathered

automatically through the use of technology. For instance, a specialized telephone

with direct links to therapeutic information and social support resources can be

programmed to record the number of times it is used by participants to access

information and support. Typically, however, assessment of enactment is more

difficult. In the memory training example, the clinician/researcher would need to rely

on verbal or written self-reports by clients or the various mnemonics used during the

day. It should be noted that, although enactment should be closely associated with

desired treatment outcomes, enactment indicators are distinct from the primary

outcomes of the study. For example, mnemonic use during the day is an enactment

indicator; but performance on a memory task after mnemonic training would be the

outcome of a memory training study.

When one considers the caregiver intervention literature in total, the majority

of researchers have neglected to measure TI measurement was an aim of REACH I

and REACH II, these two outcome papers are only publications that we are aware of

wherein all three types of TI were measured (Bell, Burgeo, et al 2006; Schulz et al


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2003). More recent studies include sections in their papers describing their TI efforts

(Teri et al 2005). A discussion of these efforts can be found in Burgio et al (2003b).

Individual and Family Counseling Intervention

In a 1997 study, Toseland & McCallion found support group intervention is

valuable for caregivers as far as increasing their social support. In addition, these

same authors found that individual intervention has an important impact on the

caregiver’s emotional health. Individual counseling for adult children can assist them

in understanding the dynamics of family as well as help them process their feelings

and caregiving experience in relation to their elderly parents.

Toseland & Smith (2001) found that individual counseling might include

several categories of topics that will benefit the caregiver. Among some of the more

common topics cited: the emotional issues surrounding illness, problem solving and

behavioral management skills for those giving care to people with dementia, family

relationship problems, and case management skills.

Family counseling is very successful in helping both the elderly care receivers

and their adult child caregivers understand the change in the relationship with the

increasing dependency of the elders and how adult children can adjust to that

change. In some cases, there may be years of dysfunctional family relationships that

resurface to impact the caregiving relationship. Family counseling can assist the

family unit to work through these issues and the focus should be to help both the

caregiver and receiver to find that place where both can communicate and

experience the new level in their relationship (Myers, 1988).

According to Toseland and Smith (2001), the literature is sparse on family

counseling for caregivers. However, since caregiving is a family issue, counseling for

family members appears to make sense and can be implemented in adult day-care

and respite centers, home health care, and other community settings.


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Combined Interventions A variety of studies show which interventions are effective in reducing the

strain on caregivers. In 1990, research on daughters and daughters-in-law who were

caring for their elders by Toseland, Rossiter, Peak and Smith cited by Toseland and

McCallion (1997), indicated that group counseling combined with individual

counseling was helpful in reducing caregiver stress.

Miller (1981) also reported that psychoeducational group counseling was

beneficial to adult children who were caregivers to their parents. In that study, group

members stated that the group provided the opportunity for them to share their

caregiving experience with others in the same situation that understood their plight.

Distribution of information on community resources and information about the aging

process was also included and was found to be helpful by group members.

In addition, Toseland (1997), found that “group and individual counseling were

effective in reducing the strain on daughters and daughters-in-law from caregiving to

a frail, elderly family member”.

As previously stated by this author, it appears that the caregiver variables and

needs must be considered before deciding which intervention will be the most

effective.

Technological Strategies

With advances in technology it is becoming more common for caregivers to

take advantage of interventions via computer. Video conferencing, webinars, and

telephone-mediated groups can be very helpful to caregivers who live in rural areas

or are not able to leave their care receiver alone to attend classes, travel to formal

counseling centers or other facilities. This technology can provide an educational

platform to inform caregivers on chronic illness topics and community services. List-

serves and websites provide caregivers who feel isolated with needed social support

and information (Toseland & Smith, 2001).


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Effectiveness of Interventions According to Toseland and Smith, (2001) most of the empirical studies to date

have concentrated on support groups and short-term individual counseling

interventions and there has been little research done on the effectiveness of family

systems counseling and technological interventions. Additionally, studies indicate

programs that offer just caregiver education and training have only small or moderate

effects on improving the caregiver’s knowledge of available services, or increasing

their problem-solving skills and social well-being. However, recent studies show that

these interventions can delay placement of the care receiver and reduce the use of

inpatient and outpatient health services. The authors point out that the results of

those studies could be useful in gathering support for more programs of that type

(Toseland and Smith 2001). Cultural considerations

There are few studies of how minority caregivers are affected by caregiving

and fewer yet on interventions that may assist people of different cultures in their

caregiving relationships (Toseland & McCallion, 1997). However, an extensive study

done by the National Alliance for Caregiving and AARP (1997), found the percent of

family caregivers who are Asian and African American is higher than those who are

Hispanic or Caucasian. The African-American population of elderly persons will

double from 2000 to 2050 and Hispanics will make up roughly one quarter of the U.S.

population by the year 2050 (U.S. Bureau of the Census, 2000). It appears that this

growth in the elderly population will have profound effects on the number of people

who will be in a caregiving situation.

Hispanic, Asian, and African American caregivers tend to keep caregiving

within the family and community (including the faith community). In Hispanic and

Native American cultures, caregiving is considered to be a high calling and involves

the entire family rather than being the responsibility of one individual. Families tend

to consist of multi-generation households where elders are not seen as burdensome,

but hold value within the family and community (LaCounte, 2001; Sotomayor, 2001).


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African American caregivers are usually women who also have other roles:

daughter, mother, wife, worker, church member, and many are single. African

American families tend to view elder caregiving as a duty in keeping with their faith

teachings. It has been suggested by Jones-Cannon & Davis, (2005) that African

American women may experience actual care-taking tasks as less stressful and

burdensome than do Caucasian caregivers. However, Jones-Cannon & Davis, (2005)

found those caregivers tend to be poorer and suffer more health problems thereby

adding to caregiving distress.

For all minority groups, caregivers tend not to use available services in their

communities for reasons such as, being unaware of services, lack of services

(especially in Native American communities), language barriers, and mistrust of

government agencies (Gwyther, 2006; Jones-Cannon, & Davis, 2006; Williams,

2005).

Implications for Counselors

Given the fact that the population of elderly in the U.S. is rapidly increasing

and that currently one out of every four people does some type of caregiving (U.S.

Dept. of Health and Human Services, 2003), it is likely that counselors will see an

increase in the number of caregiving clients. Not all caregiving situations are alike

due to environmental variables and individual perception, so therefore it is important

for counselors to understand the caregiver experience in order to help their clients

implement strategies to increase their level of ability and resilience (Hamilton, Braun,

Kerber, Thurlow & Shwieterman, 1996).

It appears that good coping skills and management techniques are indicative

of lower levels of burden (Parks & Novielli, 2000), therefore it seems reasonable that

counselors should be knowledgeable about counseling theories that help to

strengthen skills in their caregiving clients. Additionally, because of the special

needs of elders, it is vital that counselors have the knowledge and skills required to

competently assist the caregivers with their issues (Schwiebert & Myers 1994).


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Because caregiving is a family issue, it is important that counselors consider

the family when working with the caregiving client and not just focus attention on the

caregiver alone (Gopalan & Brannon, 2006; Toseland & Smith, 2001). This would

also be important when working with caregiver clients of other cultures.

According to Montgomery (2006), at some point the caregiver begins to lose

their identity as a spouse or child and assumes the identity of a caregiver. This event

is an important change in the caregiver’s life and it is as Montgomery says, a

“servable moment” - that point at which a caregiver will be ready to accept help. This

implies that counselors should be knowledgeable about the impact that caregiving

has upon an individual and be aware of when a caregiver is ready to work on their

issues.

Another important issue of which to be aware when counseling caregivers

according to Montgomery is that about 80% of caregivers is apt to be clinically

depressed and should be screened for depression early in the counseling process.

This concerns not just counselors, but family physicians, dentists, and other health-

care providers should also be aware that individuals who are caregivers might not

volunteer information about themselves, so professionals should be attentive to the

caregiver when treating the care receiver. (Parks & Novielli, 2000)

It appears from the review of literature that as the population of elders

continues to increase in the coming years, so too will the numbers of caregivers. As

social service programs continue to experience cuts in funding, as nursing homes

continue to reduce their numbers of beds, as more outpatient health services become

available, it will fall upon family caregivers to provide the long-term care needed.

Clearly, this is a problem that will not go away, it will only continue to grow.

It is this author’s opinion that counselors will be called upon to a greater

degree than ever before to provide interventions that will help distressed caregivers

and their families. Therefore in the interest of their clients, it will be the ethical

responsibility of counselors to be knowledgeable about community resources and


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types of counseling interventions in order to be competent to work with their

caregiving clients. It is also the ethical responsibility of counselors to assess their

own level of comfort in dealing with elderly people and to understand the aging

process and the issues it presents as well as the variables that affect caregivers and

the impact of caregiving on the family unit.

In a world that is changing rapidly on a cultural level, it is important for

counselors to reach out to underserved communities with programs and services to

assist those caregivers of color to care for their elders and to have knowledge and

understanding of the various cultural nuances of those clients.

Finally, as a professional who has worked in the field for four years and has

witnessed the many changes that have taken place, this author would like to stress

the importance of advocacy on behalf of family caregivers and the elderly population.

Each year program funding seems to be less. If families are expected to do the

majority of long term care in this country, then a strong voice is needed to draw the

attention of federal and state government to their plight. Counselors who know

intimately the problems caregivers and their families face will be in an advantageous

position to do research, publish materials, and create awareness for the idea that

caregiving is not a special interest or a passing phase but rather is here to stay. 12. Studies related to health information / decision support systems in the field of mental health.

A Decision Support System (DSS) is an umbrella term used to describe any

computer application that enhances the user’s ability to make decisions. More

specifically, the term is usually used to describe a computer-based system designed

to help decision-makers use data, knowledge and communications technology to

identify problems and make decisions to solve those problems.

DSS generally do not attempt to make the decision themselves, but rather

present information in a manner that is conducive to making an informed and efficient

decision.


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WHO has come up with the instrument to assess mental health systems and services at country level & it says:

Health authorities in countries need information to help them decide what

actions to take to improve mental health services in specific areas. To facilitate

decision-making, an instrument - World Health Organization Assessment Instrument

for Mental health Systems (WHO-AIMS 2.1) - has been developed, that provides

essential information on the mental health system of a country or region (WHO,

2005). WHO-AIMS 2.1 is based on the ten recommendations of the World Health

Report 2001 (WHO, 2001). These recommendations are:

1. Provide treatment for mental disorders in primary care

2. Ensure wider accessibility to the essential psychotropic drugs

3. Increase the treatment of individuals with severe mental illnesses within

community psychiatric services

4. Provide public education on mental health

5. Involve communities, families and consumers in mental health care

6. Establish national policies

7. Establish programmes and legislation on mental health

8. Develop appropriate human resources

9. Link the mental health system to the other health and non-health sectors

10. Develop information and monitoring mechanisms and support relevant

research.

For each recommendation of the World Health Report (domain of interest),

items were generated and grouped together in a number of facets (subdomains).

Experts and key focal points from resource-poor countries provided inputs to ensure

the clarity, validity and feasibility of the items. An earlier version of the instrument was

released and tested in 12 resource-poor countries. These countries were selected

based on regional diversity and size, and included countries from all the WHO

Regions. The instrument was revised and shortened based on feedback from the

pilot study as well as expert rankings of the importance of each item for planning

public mental health action in low and middle-income countries. In addition, each item


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was rated on the extent to which it is meaningful and feasible. The revised instrument

was then presented at a WHO meeting to 14 country representatives and key

resource people. Several minor additions and revisions were recommended and

were incorporated into the current version of WHO-AIMS 2.1. This version consists of

six domains (covering the 10 World Health Report 2001 recommendations, with 28

facets and 156 items). The six domains are: policy and legislative framework, mental

health services, mental health in primary health care, human resources, public

education and links with other sectors, and monitoring and research. These domains

are interdependent, conceptually interlinked, and somewhat overlapping. All six of

them need to be assessed to form a relatively complete picture of a mental health

system.

This instrument is being used by WHO for systematic baseline assessments to

help countries make information-based plans, with achievable targets, to strengthen

their mental health systems.

Clinical Decision Support Systems (CDSS or CDS)

Clinical decision support systems (CDSS or CDS) are interactive computer

programs, which are designed to assist physicians and other health professionals

with decision making tasks. A working definition has been proposed by Dr. Robert

Hayward of the Centre for Health Evidence; "Clinical Decision Support systems link

health observations with health knowledge to influence health choices by clinicians

for improved health care". This definition has the advantage of simplifying Clinical

Decision Support to a functional concept.

Role & Characteristics

A clinical decision support system has been coined as an “active knowledge

systems, which use two or more items of patient data to generate case-specific

advice.” This implies that a CDSS is simply a DSS that is focused on using

knowledge management in such a way to achieve clinical advice for patient care

based on some number of items of patient data.


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Goals of CDSS The main purpose of modern CDSS is to assist clinicians at the point of care.

This means that a clinician would interact with a CDSS to help determine diagnosis,

analysis, etc. of patient data. Previous theories of CDSS were to use the CDSS to

literally make decisions for the clinician. The clinician would input the information and

wait for the CDSS to output the “right” choice and the clinician would simply act on

that output. The new methodology of using CDSS to assist forces the clinician to

interact with the CDSS utilizing both the clinician’s knowledge and the CDSS to make

a better analysis of the patients data than either human or CDSS could make on their

own. Typically the CDSS would make suggestions of outputs or a set of outputs for

the clinician to look through and the clinician officially picks useful information and

removes erroneous CDSS suggestions.

An example of how a CDSS might be used by a clinician comes from the subset

of CDSS, DDSS (Diagnosis Decision Support Systems). A DDSS would take the

patients data and propose a set of appropriate diagnosis. The doctor then takes the

output of the DDSS and figures out which diagnoses are relevant and which are not.

Another important classification of a CDSS is based on the timing of its use.

The doctor uses these systems at point of care to help them as they are dealing with

a patient, with the timing of use as either pre-diagnosis, during diagnoses, or post

diagnoses. Pre-diagnoses CDSS systems are used to help the physician prepare the

diagnoses. CDSS used during diagnoses help review and filter the physician’s

preliminary diagnostic choices to improve their final results. And post-diagnoses

CDSS systems are used to mine data to derive connections between patients and

their past medical history and clinical research to predict future events.

The Six Levels of Clinical Decision Support include:

• Alerting

• Interpreting

• Critiquing

• Assisting


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• Diagnosing

• Managing

Effectiveness

A 2005 systematic review concluded that CDSS improve practitioner

performance but there is insufficient evidence to determine the effects on patient

outcomes.

Some Reviews

Using a taxonomy that was previously developed, the characteristics of CDSS

reported in the literature was searched. For this purpose PubMed and the Cochrane

Library for randomized controlled trials (RCTs) published in English between 1998

and 2003 that evaluated CDSS were looked into.

CDSS was coded using the devised taxonomy. 58 studies met the inclusion

criteria. The 74 reported CDSS varied greatly in context of use, knowledge and data

sources, nature of decision support offered, information delivery, and workflow

impact. Two distinct subsets of CDSS were seen: patient-directed systems that

provided decision support for preventive care or health-related behaviors via mail or

phone (38% of systems), and inpatient systems targeting clinicians with online

decision support and direct online execution of the recommendations (18%). 84% of

the CDSS required extra staffing for handling CDSS-related input or output.

The conclusions thus were CDSS are heterogeneous along many dimensions.

Caution should be taken in generalizing the results of CDSS, RCTs to different

clinical or workflow settings (Berlin et al 2006).

Challenges to Adoption Clinical Challenges

Much effort has been put forth by medical institutions and software companies

to produce viable CDSS to cover all aspects of clinical tasks. However, with the

complexity of clinical workflows and the demands on staff time, high care must be

taken by the institution deploying the support system to ensure that the system


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becomes a fluid and integral part of the workflow. To this end CDSS have met with

varying amounts of success, while others suffer from common problems preventing

or reducing successful adoption and acceptance.

Two sectors of the healthcare domain that CDSS have had a large impact are

in pharmacy and billing sectors. Pharmacy and prescription ordering systems now do

batch-based checking of orders for negative drug interactions and report warnings to

the ordering professional. Such systems commonly exist both in clinical settings as

well as in more commercial settings, such as in the software used by local or chain

pharmacy stores. Another sector of success for CDSS is in billing and claims filing.

Since many hospitals rely on Medicare reimbursements to maintain their operational

status, systems have been created to help examine both a proposed treatment plan

and the current rules of Medicare in order to suggest a plan that attempts to

maximize both the care of the patient and the financial needs of the institution.

Other CDSS that are aimed at the diagnostic tasks have found success but

are often very limited in deployment and scope. The Leeds Abdominal Pain System

went operational in 1971 for the University of Leeds hospital, and found fantastic

levels of success where the CDSS produced a correct diagnosis 91.8% of cases

compared to the clinicians’ rating of 79.6%.

Despite the wide range of efforts by institutions to produce and use these

systems, widespread adoption and acceptance has still not yet been achieved for

most offerings. One large roadblock to acceptance is workflow integration. A

tendency to focus only on the functional decision making core of the CDSS exists,

causing a deficiency in planning for how the clinician will actually use the product in

situ. Often these systems are stand-alone applications, requiring the clinician to

cease working on their current report system, switch to the CDSS, input the

necessary data, and receive the information. These additional steps break the flow

from the clinician’s perspective, and cost precious time. Of additional irritation is that

the data the clinician may need to enter is already contained elsewhere in a digital

form in that hospital’s system, and some CDSS are not equipped to automatically pull


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this relevant information. Another source of contention with many pharmaceutical

support systems as well as others comes in the form of alert fatigue. This occurs

when systems produce so many warnings for things like drug interactions that

clinicians cease to pay attention to the content of those warnings. This both prevents

possible salient warnings from being heeded as well as cause irritation in the

clinician.

Technical Challenges

CDSS face steep technical challenges in a number of areas. Biological

systems are profoundly complicated, and a clinical decision may utilize an enormous

range of potentially relevant data. For example, an electronic evidence-based

medicine system may potentially consider a patient’s symptoms, medical history,

family history and genetics, as well as historical and geographical trends of disease

occurrence, and published clinical data on medicinal effectiveness when

recommending a patient’s course of treatment. Furthermore, new data is constantly

being published which must be integrated into the system in order to maintain its

relevance.

Maintenance

One of the core challenges facing CDSS is difficulty in incorporating the

extensive quantity of clinical research being published on an ongoing basis. In a

given year, tens of thousands of clinical trials are published.

Currently, each one of these studies must be manually read, evaluated for

scientific legitimacy, and incorporated into the CDSS in an accurate way.

In addition to being laborious, integration of new data can sometimes be

difficult to quantify or incorporate into the existing decision support schema,

particularly in instances where different clinical papers may appear conflicting.

Properly resolving these sorts of discrepancies is often the subject of clinical papers

itself, which often take months to complete.


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Evaluation In order for a CDSS to offer value, it must demonstrably improve clinical

workflow or outcome. Evaluation of CDSS is the process of quantifying its value to

improve a system’s quality and measure its effectiveness. Because different CDSS

serve different purposes, there is no generic metric which applies to all such systems;

however, attributes such as consistency (with itself, and with experts) often apply

across a wide spectrum of systems.

The evaluation benchmark for a CDSS depends on the system’s goal: for

example, a diagnostic decision support system may be rated based upon the

consistency and accuracy of its classification of disease (as compared to physicians

or other decision support systems). An evidence-based medicine system might be

rated based upon a high incidence of patient improvement, or higher financial

reimbursement for care providers.

Methodological Basis of CDSS

There are many different methodologies that can be used by a CDSS in order

to provide support to the health care professional.

The basic components of a CDSS include a dynamic (medical) knowledge

base and an inferencing mechanism (usually a set of rules derived from the experts

and evidence- based medicine) and implemented through medical logic modules

based on a language such as Arden syntax. It could be based on Expert systems or

artificial neural networds of both (connectionist expert systems)

Examples of CDSS • Essential Evidence Plus: A powerful resource packed with content, tools,

calculators and alerts for clinicians who deliver first-contact care.

• Mycin one of the first expert systems to be developed in the 1970s, it does

etiological diagnoses of bacterial diseases

• Caduceus a medical expert system that could diagnose 1000 diseases.

• Internist - 1a computer-assisted diagnostic tool.


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• Dxplain

• DiagnosisPro

Role of health information managers in public health

Two recent articles in Perspectives in Health Information Management and

two articles investigate various aspects of health informatics and information

management.

The first article described the use of decision support in a nursing home

clinical information system (Alexander 2008). The decision support comprised

triggers and their associated alerts. The researcher described the proportion of

triggers and alerts within and across residents’ diagnoses. For six months, the clinical

information system was queried daily, and data were collected on the triggers and

alerts activated. Data from two of the three nursing homes involved in the study were

used because the third facility’s data were viewed as inaccurate. While few nursing

homes have implemented clinical information systems, the researcher proposed that

findings from these few implementations could inform and improve the design,

implementation, and evaluation of future systems. Types and frequencies of triggers

and alerts were analyzed.

Two input domains from the proposed model were involved in the study,

technological characteristics and individual attributes. For example, in terms of

system functioning, nursing home staff members were unaware of the location of

alerts and how to address them. In terms of individual attributes, the users’

perceptions were affected by the availability of technical supports and equipment and

by the preparation for change. Again in the language of the model, the researcher

suggested that data from both input domains affected the accuracy of data (quality

health data). Basing his remarks on his findings, the researcher noted potential areas

of future software development. In this case, in the language of the model, the

findings from quality health data fed back into the input domain of technological

characteristics. Although the researcher did not interpret his findings regarding the

effects of the availability of technical supports and equipment and preparedness for


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change, these findings, if inserted into the model, would suggest that quality health

data fed back into individual attributes (organizations and personnel). The researcher

specified that the purpose of the study did not include the testing of the effect of the

clinical information system on residents’ outcomes. However, the structure of the

model suggests that a potential future study would be the investigation of the effect of

quality health data, derived from the clinical information system, on residents’

outcomes, that is, population health or individuals’ health.

Houser (2000) examine the role of health informatics and information

management researchers. These authors call upon health informatics and

information researchers to investigate and determine the best systems, procedures,

and programs to deliver quality, safe, and effective care and services to the public.

Thus, in terms of the model, skills and interest in research would be individual

attributes. Moreover, the research would be conducted in domains on the input and

output sides of the model. For example on the input side, determining the best

systems would focus technological characteristics. Additionally, determining the best

procedures would focus professional standards and conventions. On the output side

of the model, the delivery of quality, safe and effective care via quality health data

would affect the domains of society, population health, and individuals’ health. Thus,

these authors’ insights have implications for many aspects of the model.

Finally, Houser and colleagues (2009) discuss the role of health informaticians

and information managers in public health research and data management, policy

development, and disaster preparedness and response management. These

researchers contend that health informaticians and information managers are

positioned to support the core public health functions of assessment, assurance, and

policy development. Following the model, these researchers’ discussion focuses on

the input domain of individual attributes. The researchers describe the attributes of

health informaticians and information managers in terms of their expertise, skills, and

knowledge. Implied is the effect of the expertise, skills, and knowledge on quality

health data and, consequently, on the domain of population health.


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Health information managers have much to contribute to health research and

policymaking. A record of contributions spans more than 100 years. Researchers

have investigated a range of diverse topics including personality traits; classifications,

nomenclatures, and terminologies; computer alerts; educational techniques; factors

in the successful implementation of clinical systems; managerial techniques; and

prevention, diagnosis, and treatment of disease. The next step for researchers in the

discipline is to adopt a theoretical approach to structure their diverse information into

knowledge. A suggested model for this theoretical approach is the Research and

Policy Model for Health Informatics and Information Management. Much additional

work on this model is needed, such as the clarification of boundaries between items

and the establishment of direct relationships among inputs and outputs. Future

research will discover and define these refined components (Elizabeth 2009).

Documents

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