Determinants of disabled elderly caregivers burden in Developing

Countries

Prof. Mohamed Mohamedy Awad, MD1, Hanan Abass El Gammal, MD1

Prof. Magda Taha Fahmy, MD2.

1Department of Family medicine, Faculty of medicine, Suez Canal University.

2Department of Neuro- psychiatry , Faculty of medicine, Suez Canal University.

Type pf research: original article

Author Role

Dr Hanan abbas

Lecturer of Family Medicine, Suez

Canal University

The idea of research, design of questionnaire,

literature review, data analysis and review of

references

Email:

hanfmhananfmhan@yahoo.comProfessor Mohamed Mohamedy

Awad, Professor of Family Medicine ,

Suez Canal University

Interpretation of collected data, literature

review, statistical analysis review of discussion

Email

mohammadydiab@yahoo.com

Prof. Magda Fahmy, professor of

psychiatry, Suez Canal University

Literature review, review of discussion

Corresponding author:Dr hanan abbasLecturer of family medicine, Suez canal universityMobile: 0123808365E mail: hanfmhananfmhan@yahoo.com

Abstract: Background:

Caring for a physically disabled relative can be physically and emotionally

stressful, placing the caregiver at heightened risk of illness and chronic disease

onset. Although an abundance of research has focused on the adverse

emotional and social effects of care giving, there have been few studies of the

physical health consequences for this group.( Norris VK, et al, 1990).

This study aims to assess relationship between care giving process and

disability of the elderly.

Subjects and method: A cross sectional household study was conducted to

assess the burden facing the caregivers of elderly with functional and cognitive

disabilities living in Ismailia governorate.

Comprehensive sample was conducted ; all disabled elderly were included after

assessment of functional disability and cognitive disability among them.

level of functional disabilities of elderly was assessed by using the Katz ADL

(Activity Of Daily Living) scale, and assessment of caregiver burden through

The Zarit Burden Interview.

Results: The mean age of the studied elderly was 76.5+ 9.2 (65-87), 48.9%

were females, 38.6% are having chronic diseases. The mean age of elderly

caregiver 37.6±11.5 (15-76), 78.5 % were females, mean care giving hours were

15.6±6.9 (4-24).

According to Katz index of independence in ADL the elderly had mild

dysfunction in 50.4 %, by using the mini mental score about 28.6% of disabled

elderly suffer from cognitive disability with mean mental score was 21.8±3.9.

Prevalence of burden among caregivers was 37 % with mean burden score was

22. The study showed that statistically significant positive correlation between

burden score and age of the elderly, number of chronic diseases, and caregiver

age. And statistically significant negative correlation between burden score and

ADL score, MMSE score. But no statistically significant between burden score

care-giving hours/d, and income.

Conclusion:

Home care of chronically disabled persons has received considerable attention

in recent years, Caregivers often spend a disproportionate amount of their

emotional, physical, or financial resources on the person requiring care. As time

and illness progress, the responsibility may be met with decreasing enthusiasm,

regardless of emotional relationships, and thus leads to burnout and increased

caregiver burden.

Introduction:

By 2020, the world's population is expected to include more than 1 billion

elderly people, most of whom are living in developing countries rather than in

developed ones . Quality of life in later years may limit the ability to care for

oneself without assistance ( Sevgi Canbaz, et al, 2003).

The disabled elderly are those individuals who require assistance with basic

Activities of Daily Living, commonly referred to as ADLs. ADLs have become

an accepted way to define and measure the long-term care population, because

disability in activities of daily living is a direct indicator of the need for care

( Brian o. Burwell, and Beth Jackson, 1994).

Impairments in cognitive functioning often lead to greater assistance needs,

because people who are cognitively impaired often require 24-hour supervision

so they do not harm themselves or others (Brian o. Burwell, and Beth

Jackson, 1994).

Informal caregiver refer to family members who provide the care to impaired

older adults living in the community (Lisa Nerenberg, 2002). Caregivers'

burden is a social issue in many countries (Aria Y, et al, 2005) .

The burden of care is defined as the discomfort experienced by the principal

caregiver of an older family member, including the caregiver's health,

psychological well-being, finances, and social life (Zarit SH, et al, 1980) .

Caregiver burden is defined as the strain or load borne by a person who cares

for an elderly, chronically ill, or disabled family member (Stuckey JC, et al,

1996). It is a multidimensional response to physical, psychological, emotional,

social, and financial stressors associated with the caregiving experience

(Richard T et al, 2000).

Caregiver burnout is the progression of caregiver burden to the point where the

experience is no longer a viable or healthy option for either the caregiver or the

person receiving care (Zarit SH et al, 1980).

Arai et al 2002; conducted a survey targeting all disabled elderly and their

principal caregivers residing in Matsuyama Town located in rural northern

Japan, using Zarit Burden Interview questionnaire to assess the level of burden

among the caregivers and found that the prevalence of this burden was 32.7%

( Aria Y et al, 2002 ).

Difficulties experienced by caregivers often are considered only after the signs

of burnout are apparent.

Illness frequently has a ripple effect across the entire family group, affecting

both the health of other family members and the quality of care they deliver

( Stone R et al ,1987).

Caregivers often spend a disproportionate amount of their emotional,

physical, or financial resources on the person requiring care. As time and illness

progress, caregivers may find themselves angry or resentful about this toll on

their lives; insight into their feelings often serves only to make them feel guilty

or shameful about their reactions (Richard T et al, 2000).

Research by Saad et al examined the characteristics of caregivers’ coping

mechanisms and found that active coping skills and management plans were

associated with lower caregiver burden levels (Saad. K, Hartman. J, 1995).

Strong social support has also been correlated with lower caregiver burden-

specifically, visits by family and a strong social network were associated with

lower levels.( Dunkin JJ& Anderson H, 1998).

So the aim of the work is to improve quality of life of family caregivers of

elderly, by early detection of signs and degree of care-giver burden and factors

affecting it positively.

Subjects and Methods

Study design:

A cross sectional household study was conducted to assess the burden facing

the caregivers of elderly with functional and cognitive disabilities living in

Ismailia governorate from 6/2008-6/2009.

Study setting:

This work was done in Ismailia governorate .

Study population:

Participants are family caregivers providing home healthcare to people aged 65

years and above living in Ismailia were allocated to this study.

Inclusion criteria:

-Any elderly with functional and or cognitive disabilities and their family

caregivers providing home care to people aged 65 years either living with the

elderly or not.

Exclusion criteria:

-Elderly with disabilities due to acute condition as new operation, and any

family members who are not care giving to the elderly.

Sampling:

Comprehensive sample was conducted ; all disabled elderly and their caregivers

were included after assessment of functional disability and cognitive disability

among them.

Procedure :

The data was collected through structured household questionnaire including:

A-Socio demographic data: -elderly age 65 and above , gender, marital state,

chronic illness as hypertension, diabetes coronary artery disease,

cerebrovascular disease, osteoarthritis, hearing impairment, visual impairment.

-Caregiver’s age, gender, marital state, relationship to elderly, working status,

income (sufficient or insufficient), daily hours spent on care giving.

B-level of functional disabilities of elderly through:

The Katz ADL ( Activity Of Daily Living) scale (Katz, S. (1983). assesses a

patient's ability to perform six related functions: bathing, dressing, toileting,

transferring, continence, and eating.

Each criteria is graded on level of dependence

-Performs independently

-Performs with assistance

patients are scored yes/no for independence in each of the six functions. A score

of 6 indicates full function, 4 indicates moderate impairment, and 2 or less

indicates severe functional impairment.

C - Cognitive disability of the elderly: one of the most commonly used

screening tool for dementia is the Mini-Mental State Test. (Karl E, et al 2000).

It is the best tool that can be used to systematically and thoroughly assess

mental status. It is an 11-question measure that tests five areas of cognitive

function: orientation, registration, attention and calculation, recall, and

language. The maximum score is 30. Any score over 27 (out of 30) is

effectively normal. Below this, 20-26 indicates mild dementia; 10-19 moderate

dementia, and below 10 severe dementia (Powsner S, Powsner D (2005).

D- Assessment of caregiver burden through The Zarit Burden Interview

that is consist of a care burden scale developed by Zarit, comprises 22 items

assessed by a 5-point Likert scale to provide a total score of 0 to 88, with a

higher score representing a greater care burden (Aria Y, 1997).

The Zarit Burden Interview is now the instrument most widely used in North

America and Europe for assessing the burden experienced by family caregivers

who look after the community-residing impaired elderly (Zarit SH et al, 1980).

Questions (rated as 0-Never to 4-Nearly always)

Interpretation

No or minimal burden: 0 to 20

o Mild to moderate burden: 21 to 40

o Moderate to severe burden: 41 to 60

o Severe burden: 61 to 88

-The questionnaire was translated into Arabic and the necessary

modifications were done.

Pilot study was done to assess understandability of the items, their meaning,

and their clarity to the Egyptian patients.

Data presentation and analysis

Data was collected by the researcher and was be processed by using SSPS

V.11.

- Chi-square test was used for categorical variables and the level of significance

was be consideration statistically significant if (P-value is 0,05) and will be high

statistically signification if (P-value is 0,01)

- T-test was done for continuous variables.

-Pearson correlation test (r) was used for correlation between the variables of

the study.

The result was presented in order of percentage and tabulated in graphs and

tables.

RESULTS

Table (1). Socio-demographic characteristic of the studied elderly (n=280).

Variables Total (n=280)

Mean age ± SD (range) 76.5±9.2 (65-87)

Age groups (years): No. %

65-<70 100 35.7

70-<75 67 23.9

75-<80 48 17.1

80-<85 35 12.5

≥85 30 10.7

Sex:

Male 143 51.1

Female 137 48.9

Marital status:

Married 152 54.3

Widow 128 45.7

Chronic diseases:

No chronic diseases 46 16.4

Chronic diseases 234 83.6

Table( 1) illustrate the socio demographic data of disabled elderly, their mean age was

76.5±9.2, total number of male was 51.1% and female 48%, and about 83.6% suffer from

chronic diseases.

Table (2). Socio-demographic characteristic of the elderly caregiver (n=280).

Variables Total (n=280)

Mean age ± SD (range) 37.6±11.5 (15-76)Age groups (years): No. %

15-<35 189 67.535-<55 67 23.955-<75 18 6.4≥75 6 2.1

Sex:Male 35 12.5Female 245 87.5

Marital status: Single 27 9.6Married 242 86.4Widow 3 1.1Divorced 8 2.9

Relation to elderly: Spouse 82 29.3Daughter 27 9.6Son 32 11.4

Daughter-in-low 131 46.8Grandchild 8 2.9

Occupation:

Employed 51 18.2Retired 4 1.4Not employed 225 80.4

Income: Sufficient 205 73.2Insufficient 75 26.8

care-giving (hours): <6 15 5.46-<12 54 19.312-<18 82 29.318-24 129 46.0

Mean care-giving hours ± SD (range) 15.6±6.9 (4-24)

Table( 2) illustrate the socio demographic data of caregivers, their mean age was 37.6±11.5,

total number of male was 12.5% and female 87.5%, and about 46.8% were daughter-in-law,

mean care- giving hours15.6 + 6.9

Table(3). Grading of Katz index of independence in ADL in the studied elderly (n=280).

ADL score No. %

Severe dysfunction (score ≤2) 48 17.1

Moderate dysfunction (score 3-4) 51 18.2

Mild dysfunction (score 5) 141 50.4

Full function (score 6) 40 14.3

Total 280 100.0

Table 3 show that about 82.9% of disabled elderly suffer from functional disability. With

mild disability 50.4%, moderate disability 18.2% and sever disability 17.1%.

Table(4). Mini-Mental State Score among elderly (n=280).

Variables Total (n=280)

Mean mental score ± SD (range) 21.8±3.9 (9-25)

Mental state score (points): No. %

Normal (≥22) 200 71.4

Mild disability (16-21) 51 18.2

Moderate disability (8-15) 20 7.1

Severe disability (<8) 9 3.2

Table 4 showed that about 28.6% of disabled elderly suffer from cognitive disability with

mean mental score was 21.8±3.9 .

Fig (1) prevalence of burden among caregivers

Fig (1) illustrated that burden among caregivers was 37%. With mild burden was

30 %, moderate burden was 5%. Severe burden was 2 % with mean burden score was 22.

Table(5) Correlation between burden score and other study variables.

Burden score

Pearson Correlation (r) p-value

Elderly age 0.298 0.000**

No. Chronic disease 0.315 0.000**

Caregiver age 0.276 0.000**

Income 0.061 0.305

ADL score -0.473 0.000*

Mental score -0.335 0.005**

Care-giving/h/d -0.019 0.753

* Correlation is significant at the 0.05 level.

** Correlation is significant at the 0.01 level.

Table (5) demonstrate statistically significant positive correlation between burden score and

age of the elderly, number of chronic disease, and caregiver age. And statistically significant

negative correlation between burden score and ADL score, MMSE score. But no statistical

significance between burden score care-giving hours/d, and income.

Discussion

The objective of this study was to assess family caregivers burden for

disabled elderly in Ismailia, Egypt. The study included 280 disabled elderly

(functional or and mental disability) and their family caregivers.

This study found that caregivers were females 87.5%, Our findings are

similar to previous research findings in the study conducted by Rashmi (2007)

and Tomoko et al (2003), who reported that the most caregivers are females.

Most reports indicate that women make up about three quarters of all primary

caregivers (Montgomery & Kosloski, 1999; Wagner, 1997;Stone etal.,

1987) .

Three key findings have materialized from the body of literature that explores

issues of gender. First, most caregivers are female. Second, there are differences

in the way that men and women fill care giving roles. Third, female caregivers

tend to report greater levels of stress or strain than do males (Neal, Ingersoll-

Dayton, & Starrels, 1997).

However, the number of male caregivers appears to be rising, and a survey

conducted by the National Family Caregiver Association (NFCA) in 2000 found

that 44% of the caregivers interviewed were male (NFCA, 2000).

Studies had found that women provide more intensive care than do men. Male

spousal caregivers are more likely than female spousal caregivers to obtain in-

home services to aid in their responsibilities and sons and daughters tend to

choose different solutions when care giving situations arise. For example,

women are more likely to perform tasks such as cooking and cleaning, which

often require more time or more frequent contact than do the tasks that males

are more apt to perform, such as financial management and home repairs

(Tennstedt, 1999).

The present study revealed that about half of caregivers (46.8%)was

daughter- in -law while the spouse represented 29.3% of the sample. This result

was consistent with one study done in India by Rashmi Gupta, (2007) found

that 30.1% of caregivers were daughters-in-law while 9.7% were spouses. But

not consistent with many results as in the study conducted Tomoko et al,

( 2003) which revealed that the spouse represented 71% of the sample., and the

study by Montgomery and Kosloski, ( 2000) Spouses are most likely to be

primary caregivers (48 percent). and a study by G. Karlikaya et al( 2005)

reported that 44.2% of caregivers were spouse. This deference between our

result and ther studies could be due to difference in the culture in Egypt, as

extended family is still present and more than generation live in the same house.

The present study revealed that the prevalence of burden among family

caregivers for disabled elderly was 37. % (30% mild, 5. % moderate, 2 %

severe) with mean burden score was 22. Many studies were conducted to

determine the burden among caregivers of disabled elderly. Some studies are

consistent with our results as that reported by Yumiko aria (2004) a study was

conducted to target all disabled elderly and their principal caregivers residing in

Matsuyama town located in rural northern Japan found that burden among

family caregivers for disabled elderly was 32.5 with mean burden score 28.7.

Other study showed higher prevalence of burden as G. Karlikaya et al (2005)

reported that 90% of the caregivers had some degree of burden. This

difference in our result and the other results due to difference in the sample.

This study revealed that there was negative relation between functional

disability among the elderly and caregiver burden. Also our study revealed that

there was negative relation between mental disability of elderly and caregiver

burden.

Our results is consistent with other studies such as the study conducted by

Fredman, et al (1995) to assess burden among white and black caregivers to

elderly adults, revealed that care giving activities (helps with ADLs, extra time

spent care giving, unable to leave care recipient alone), and care recipient needs

(IADL limitations, cognitive impairment or, recent hospitalization) were

significantly associated with burden among caregivers.

Hiroko Miura(,2005) .reported that on examining the relationship between

caregiver burden and attributes of the impaired elderly including ADL and

cognitive function,

bi-variate analysis indicated that cognitive status of the impaired elderly was

significantly related to family caregiver burden.

Arai (1999) reported that partial limitations in ADL was found to be risk

factor for caregivers' feelings of heavy burden.

Andrieu et al (2003) studied caregivers of 531 dementia patients and

concluded that low MMSE, behavioural problems and female gender were

associated with a high level of burden.

Factors related to ending care giving in the long-term are presence of

cognitive impairment in the recipient, assisting with more ADL tasks, and

viewing care giving as emotionally hard (Judith D. Kasper, 1990) .

Many studies examined the stressfulness of care giving, and claimed that

stress did not necessarily result in quitting. Those particular studies tried to

determine which factors increase the probability that caregivers drop out. The

signal is clear: quitting was more likely to occur when the care recipient had

many ADL limitations and needs help on demand.

( Boaz, and Muller, 1992)

Karin (1999) found that there was a positive correlation between increased

activities of care performed by the caregiver and caregiver burden. This

included both the provision of direct care such as bathing and indirect care such

as running errands, preparing meals, and performing housework.

The stresses of care giving are often formidable. Surveys indicate that

caregivers feel particularly stressed by: (1) having to provide care when they are

sick; (2) having to provide constant attention to the care-recipient; and (3)

feeling that informal care giving has worsened their own health. These stresses

are most strongly associated with the level of disability of the care-recipient. As

the needs of the care-recipient increase, so does the stress of providing care.

Conclusion : the present study revealed that there was positive correlation

between age of disabled elderly and the degree of burden, and the burden

increase when the disabled elderly was male. The study showed that

caregivers of disabled elderly who has chronic disease, suffer from more burden

than who do not have chronic disease.

Also there was a statistically significant association between sex of caregivers

and the level of the burden. male caregivers suffer more burden than female.

Our study revealed that the older age of the caregivers suffer from more

burden than the younger age and found that the spouse has higher burden than

the other member of family.

Our study revealed that there was negative relation between elderly functional

disability, mental disability, of elderly, income of the caregivers, care giving

hours and the level of the burden.

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