What can we learn from What can we learn from people with Alzheimer’s people with Alzheimer’s

disease?disease?

Professor Bob WoodsProfessor Bob Woods

Dementia Services Development Centre Dementia Services Development Centre WalesWales

Bangor UniversityBangor University

Alzheimer’s disease and Alzheimer’s disease and dementia?dementia?

Are they the same thing?Are they the same thing? Yes and No! Yes and No! Dementia is the family name for a Dementia is the family name for a

number of conditions, of which number of conditions, of which Alzheimer’s disease is the most commonAlzheimer’s disease is the most common

So, Alzheimer’s disease is a dementia, So, Alzheimer’s disease is a dementia, but not all dementia is Alzheimer’s but not all dementia is Alzheimer’s diseasedisease

So what is dementia?So what is dementia?

An acquired impairment An acquired impairment Global cognitive functions (memory Global cognitive functions (memory

plus)plus) Self-care and day-to-day functionSelf-care and day-to-day function Clear consciousnessClear consciousness Usually progressiveUsually progressive Behavioural and psychological Behavioural and psychological

symptoms symptoms maymay include wandering, include wandering, aggression, apathy, hallucinations, loss aggression, apathy, hallucinations, loss of inhibitions, repetition etc.of inhibitions, repetition etc.

The scale of the condition – The scale of the condition – prevalence (Dementia UK report)prevalence (Dementia UK report)

<65<65 0.1%0.1% 65-6965-69 1.3%1.3% 70-7470-74 2.9%2.9% 75-7975-79 5.9%5.9% 80-8480-84 12.2%12.2% 85-8985-89 20.3%20.3% 90-9490-94 28.6%28.6% 95+95+ 32.5%32.5%

Prevalence of dementia in older Prevalence of dementia in older people people (UK Dementia Report, 2007)(UK Dementia Report, 2007)

0

5

10

15

20

25

30

35

65-69

70-74

75-79

80-84

85-89

90-94

95+

Prevalence ofdementia (% )

An older populationAn older population

0

0.5

1

1.5

2

2.5

Millions

80+ 85+

197119862006

North WalesNorth Wales

Number of people with dementia Number of people with dementia projected to increase by 35% by the projected to increase by 35% by the year 2021year 2021

(Alzheimer’s Society, UK Dementia Report, 2007)(Alzheimer’s Society, UK Dementia Report, 2007)

Dementia UK reportDementia UK report

Prevalence of dementia in Prevalence of dementia in Conwy Conwy (Dementia UK report, 2007)(Dementia UK report, 2007)

30-6430-64 65-7465-74 75+75+ TotalTotal % of % of over over 65s65s

% of % of total total pop.pop.

MenMen 1818 147147 505505 670670 5.95.9 1.31.3

WomenWomen 1313 133133 1,2461,246 1,3921,392 9.29.2 2.42.4

TotalTotal 3131 280280 1,7511,751 2,0622,062 7.87.8 1.851.85

ProjecteProjected by d by 20212021

3131 380380 2,3822,382 2,7932,793 7.817.81 2.452.45

Estimates of numbers of YPWD (30-64) Estimates of numbers of YPWD (30-64) in North Wales (Dementia UK report, in North Wales (Dementia UK report,

2007)2007)

MaleMale FemaleFemale TotalTotal

AngleseyAnglesey 1212 88 2020

ConwyConwy 1818 1313 3131

DenbighDenbigh 1616 1111 2727

FlintshireFlintshire 2424 1717 4141

GwyneddGwynedd 1919 1313 3232

WrexhamWrexham 2121 1414 3535

TotalsTotals 110110 7676 186186

Common types of dementia Common types of dementia (UK Dementia Report, 2007)(UK Dementia Report, 2007)

Alzheimer’s disease - 62%Alzheimer’s disease - 62% Vascular (multi-infarct) - 17%Vascular (multi-infarct) - 17% Mixed Alzheimer’s & Vascular - 10%Mixed Alzheimer’s & Vascular - 10% Lewy Body dementia - 4%Lewy Body dementia - 4% Fronto-temporal dementia (including Pick’s) - Fronto-temporal dementia (including Pick’s) -

2%2% Parkinson’s Disease Dementia – 2%Parkinson’s Disease Dementia – 2% Other (including alcohol-related, CJD etc.) - 3%Other (including alcohol-related, CJD etc.) - 3% Each type associated with distinct brain Each type associated with distinct brain

changes, evident at post-mortemchanges, evident at post-mortem

105 years ago…105 years ago…

In 1906, Alois In 1906, Alois Alzheimer described Alzheimer described the case of Auguste the case of Auguste D. (died aged 55)D. (died aged 55)

Memory loss, Memory loss, disorientation, disorientation, hallucinationshallucinations

‘‘an unusual disease an unusual disease of the cerebral cortex’ of the cerebral cortex’ – plaques and tangles– plaques and tangles

But what does it mean for a But what does it mean for a person to have dementia?person to have dementia?

The public viewThe public view Tragedy?Tragedy? Suffering?Suffering? A living death?A living death?

Contrasting images (1989)Contrasting images (1989)

But what does it mean for a But what does it mean for a person to have dementia?person to have dementia?

The public viewThe public view Tragedy?Tragedy? Suffering?Suffering? A living death?A living death? Nothing can be done?Nothing can be done? Worse than death? Worse than death?

What do people with dementia say?What do people with dementia say?

Lesson 1Lesson 1

‘‘I’m still a person’I’m still a person’

Personhood and dementiaPersonhood and dementia

It is a ‘Hypercognitive culture’ which It is a ‘Hypercognitive culture’ which categorizes those with severe dementia as categorizes those with severe dementia as ‘non-persons’ ‘non-persons’ (Post, 1995)(Post, 1995)

Abilities and capacities do remain - not all Abilities and capacities do remain - not all is lostis lost

Emotional sensitivity and spiritual Emotional sensitivity and spiritual awareness possible awareness possible (Sacks, 1985)(Sacks, 1985)

Aesthetic and relational aspects of well-Aesthetic and relational aspects of well-being possible in severe dementia being possible in severe dementia (Post, 1998)(Post, 1998)

Creativity in dementia – Creativity in dementia – Willem de Kooning 1904-1997Willem de Kooning 1904-1997

““'Style,' neurologically, is the deepest part of 'Style,' neurologically, is the deepest part of one's being, and may be preserved, almost to the one's being, and may be preserved, almost to the last, in a dementia." (Sacks)last, in a dementia." (Sacks)

““De Kooning's art in the '80s lost much of its De Kooning's art in the '80s lost much of its former character, most obviously athletic vigor, former character, most obviously athletic vigor, while not only retaining a de Kooning-esque feel while not only retaining a de Kooning-esque feel but introducing unexampled levels and resources but introducing unexampled levels and resources of style. These paintings stand alone in his career of style. These paintings stand alone in his career and in the world.”and in the world.”

Schjeldahl 1997 Arts ForumSchjeldahl 1997 Arts Forum

Creativity in dementia – Creativity in dementia – Willem de KooningWillem de Kooning

““What does "knowing how to paint" mean? Nothing in What does "knowing how to paint" mean? Nothing in theory, practically anything in practice. Late de theory, practically anything in practice. Late de Koonings strike me as embodied theories of painting: Koonings strike me as embodied theories of painting: meaning nothing, and meaning it with precision. They meaning nothing, and meaning it with precision. They are pictures of pure capacity. The work entails fantastic are pictures of pure capacity. The work entails fantastic abilities not even for their own sake, but for no sake.”abilities not even for their own sake, but for no sake.”

““I propose that late de Kooning is the degree zero of I propose that late de Kooning is the degree zero of painting, attained not through simplification but, fully painting, attained not through simplification but, fully complex, through being emptied of anything not complex, through being emptied of anything not identical with its execution. This work henceforth identical with its execution. This work henceforth defines the verb to paint.”defines the verb to paint.”

Schjeldahl 1997 Arts ForumSchjeldahl 1997 Arts Forum

Lesson 2Lesson 2

‘‘I’m still living’ – quality of life I’m still living’ – quality of life is possible in dementiais possible in dementia

How can we evaluate Quality How can we evaluate Quality of Life (QoL) in dementia?of Life (QoL) in dementia?

QOL-AD (Logsdon et al, 1999)QOL-AD (Logsdon et al, 1999) Simple self-report measure of QoLSimple self-report measure of QoL

13 items, 4 point scale13 items, 4 point scale E.g. Energy; Fun; Money; Physical E.g. Energy; Fun; Money; Physical

health; Friends; Family etc.health; Friends; Family etc. Completed in interview with person Completed in interview with person Domains validated from focus groups Domains validated from focus groups

(people with dementia & carers) & (people with dementia & carers) & questionnaires (professionals)questionnaires (professionals)

Can you rely on what people Can you rely on what people with dementia tell you about with dementia tell you about

their QoL?their QoL? Scores are internally consistent Scores are internally consistent

(N=201: alpha = 0.82)(N=201: alpha = 0.82)

Scores are similar from one week to the next Scores are similar from one week to the next (N=38: Total score 0.87 intraclass correlation)

Scores do not depend on who is the interviewerScores do not depend on who is the interviewer Inter-rater reliability (N=38 Total score 0.96 intraclass coefficient)Inter-rater reliability (N=38 Total score 0.96 intraclass coefficient) Sub-scales Kappa’s 12/13 ‘excellent’ agreementSub-scales Kappa’s 12/13 ‘excellent’ agreement

Scores are associated with observed well-being Scores are associated with observed well-being (Dementia Care Mapping r=0.39 p=0.05)(Dementia Care Mapping r=0.39 p=0.05)

Does QoL decline as memory Does QoL decline as memory gets worse?gets worse?

Sample of 201 people with dementia in Sample of 201 people with dementia in residential homes / day centres residential homes / day centres (MMSE 14.4/30 sd (MMSE 14.4/30 sd 3.8)3.8)

QOL-AD not associated with memory and QOL-AD not associated with memory and cognition measures such as ADAS-Cog or cognition measures such as ADAS-Cog or MMSEMMSE

HigherHigher in those with moderate dementia in those with moderate dementia than in those with mild dementia on clinical than in those with mild dementia on clinical dementia ratingdementia rating

Relates to depression, not cognitionRelates to depression, not cognition (Thorgrimsen et al., 2003)(Thorgrimsen et al., 2003)

Does QoL reflect lack of insight Does QoL reflect lack of insight and awareness? and awareness?

100 people with early-stage dementia and 100 people with early-stage dementia and their carers in North Wales were interviewedtheir carers in North Wales were interviewed

Awareness evaluated in several ways:Awareness evaluated in several ways: Global rating of interviewGlobal rating of interview Discrepancies between person’s rating of function in Discrepancies between person’s rating of function in

3 domains and those made by carer3 domains and those made by carer Memory *Memory * Day-to-day function *Day-to-day function * Social functionSocial function

Discrepancy between performance on a memory Discrepancy between performance on a memory test and the person’s rating of their performancetest and the person’s rating of their performance

There is a small degree of association There is a small degree of association between some measures of awareness and between some measures of awareness and QoL-AD scores, but mediated by depression QoL-AD scores, but mediated by depression scoresscores

(Clare, Woods et al. – the MIDAS project)(Clare, Woods et al. – the MIDAS project)

‘‘We’re LIVING We’re LIVING with dementia, with dementia, not dying from not dying from it!’it!’

The ACE Club (for The ACE Club (for younger people younger people with dementia and with dementia and their carers), Rhyltheir carers), Rhyl Alzheimer’s Society Living

with Dementia programme

Lesson 3Lesson 3

The importance of The importance of relationshipsrelationships

Quality of life and quality of Quality of life and quality of relationshiprelationship

Long-established findings that quality Long-established findings that quality of relationship, of relationship, as rated by care-as rated by care-givergiver, predicts , predicts carer’scarer’s level of strain / level of strain / depression depression (e.g. Morris et al., 1988; (e.g. Morris et al., 1988; Williamson & Schulz, 1990)Williamson & Schulz, 1990)

Could person with dementia also rate Could person with dementia also rate the relationship?the relationship?

Can people with dementia rate Can people with dementia rate the quality of the relationship?the quality of the relationship?

77 people with dementia and care-givers participated77 people with dementia and care-givers participated Person with dementia average age 77.5; 57% femalePerson with dementia average age 77.5; 57% female Care-giver average age 68.9; 62% femaleCare-giver average age 68.9; 62% female 78% spouses; 90% co-resident78% spouses; 90% co-resident Mean duration of memory problems 3.1 years (range Mean duration of memory problems 3.1 years (range

1-10)1-10) 60% of carers inputting more than 50 hours per week60% of carers inputting more than 50 hours per week 16% carers report significant symptoms of depression 16% carers report significant symptoms of depression

(GDS-15)(GDS-15) Interactions video-taped – puzzle and meal planning Interactions video-taped – puzzle and meal planning

10-15 minutes10-15 minutes

Can people with dementia rate Can people with dementia rate the quality of the relationship? the quality of the relationship?

- 2- 2 Several brief relationship questionnaires were Several brief relationship questionnaires were

testedtested People with dementia were able to complete People with dementia were able to complete

these consistently and reliably these consistently and reliably Positive Affect (PA) Index (Bengston, 1973)Positive Affect (PA) Index (Bengston, 1973)

5 items5 items 6 point scale (visually presented)6 point scale (visually presented) Communication quality, closeness, similarity of views on Communication quality, closeness, similarity of views on

life, engaging in joint activities, overall relationship life, engaging in joint activities, overall relationship qualityquality

Quality of the Care-giving Relationship - QCPR Quality of the Care-giving Relationship - QCPR (Spruytte 2002)(Spruytte 2002) 14 items14 items 5 point scale (visually presented)5 point scale (visually presented) Two sub-scales: warmth and absence of criticismTwo sub-scales: warmth and absence of criticism

Did people with dementia and Did people with dementia and carers agree in their ratings? carers agree in their ratings?

Good agreement on warmth and Good agreement on warmth and positive affectpositive affect

Less agreement on criticismLess agreement on criticism Carers rate the relationship less Carers rate the relationship less

positivelypositively

Different perspectives?Different perspectives?

What predicts difference in scores What predicts difference in scores between person with dementia and between person with dementia and carer:carer: Positive Affect Index: Relative’s Stress Positive Affect Index: Relative’s Stress

Scale only predictor (8% of variance)Scale only predictor (8% of variance) QCPR: Relative’s Stress Scale only QCPR: Relative’s Stress Scale only

predictor (32% of variance)predictor (32% of variance) Severity of memory impairment not Severity of memory impairment not

related to differences! related to differences!

Association between relationship Association between relationship ratings and ratings on video-ratings and ratings on video-

interaction tasksinteraction tasks

Person with dementia ratings predict Person with dementia ratings predict video-interaction ratings just as well video-interaction ratings just as well as carer ratingsas carer ratings

Quality of life of the person with dementia (QoL-AD rated by person

with dementia)

QoL-AD relates to Positive Affect QoL-AD relates to Positive Affect Scale and QCPR (warmth) as rated by Scale and QCPR (warmth) as rated by person with dementiaperson with dementia

QoL-AD does not relate to ratings of QoL-AD does not relate to ratings of QCPR (criticism) by person with QCPR (criticism) by person with dementiadementia

Quality of life of the person with dementia (QoL-AD rated by person

with dementia)

QCPR (warmth) rated by person with QCPR (warmth) rated by person with dementia is the best predictor of QoL-ADdementia is the best predictor of QoL-AD (accounts for 14% of variance, p=0.002)(accounts for 14% of variance, p=0.002)

Age, gender, MMSE, dementia severity Age, gender, MMSE, dementia severity (CDR), depression (Cornell), anxiety (CDR), depression (Cornell), anxiety (RAID), Relative’s Stress Scale and carer (RAID), Relative’s Stress Scale and carer depression (GDS) do not significantly add depression (GDS) do not significantly add to the predictionto the prediction

Previous studies (e.g. Thorgrimsen et al., Previous studies (e.g. Thorgrimsen et al., 2003) suggest depression is main 2003) suggest depression is main identifiable factor in predicting QoL-ADidentifiable factor in predicting QoL-AD

Relative’s Stress ScaleRelative’s Stress Scale

Strong negative associations with:Strong negative associations with: Person with dementia Positive affect indexPerson with dementia Positive affect index Carer’s Positive affect indexCarer’s Positive affect index Person with dementia QCPR warmth Person with dementia QCPR warmth Carer QCPR warmth subscaleCarer QCPR warmth subscale Carer QCPR absence of criticism scaleCarer QCPR absence of criticism scale

RelationshipsRelationships Care-giving occurs in the context of (often) Care-giving occurs in the context of (often)

a long-standing relationship a long-standing relationship Many people with dementia are able to Many people with dementia are able to

reliably and accurately rate the quality of reliably and accurately rate the quality of the current relationshipthe current relationship

The quality of the relationship may be The quality of the relationship may be observed through observation of structured observed through observation of structured taskstasks

The quality of life of the person with The quality of life of the person with dementia and the stress experienced by dementia and the stress experienced by the carer are associated with the quality of the carer are associated with the quality of the current relationshipthe current relationship

The differences in perception may be The differences in perception may be attributable in part to carer stressattributable in part to carer stress

Personhood in relationshipPersonhood in relationship ““Personhood is a standing or status Personhood is a standing or status

that is bestowed upon one human that is bestowed upon one human being, by others, in the context of being, by others, in the context of relationship and social being.” relationship and social being.” (Kitwood, 1997)(Kitwood, 1997)

High profile examples:High profile examples: Malcolm & Barbara PoyntonMalcolm & Barbara Poynton Iris Murdoch & John BayleyIris Murdoch & John Bayley

““Dr A’s rewards and Dr A’s rewards and compensations, even the compensations, even the most unexpected ones, most unexpected ones, are concerned with being are concerned with being alive; finding out not only alive; finding out not only how much there is in how much there is in being alive, but what being alive, but what surprising new things surprising new things there turn out to be; there turn out to be; freedoms, and pleasures freedoms, and pleasures in constraint, which we in constraint, which we would never have would never have imagined or thought of, imagined or thought of, never even have never even have considered possible.”considered possible.”

Lesson 4Lesson 4

Those who provide care must Those who provide care must be valuedbe valued

The impact on familiesThe impact on families Family care is major source of support for Family care is major source of support for

people with dementia – spouses and adult people with dementia – spouses and adult childrenchildren

Around 25% of family carers experience high Around 25% of family carers experience high levels of distresslevels of distress

Associated with reduced life expectancy in Associated with reduced life expectancy in carerscarers

Challenging behaviour is major contributor to Challenging behaviour is major contributor to carer stress, and breakdown of care at homecarer stress, and breakdown of care at home

Carer health may also lead to crisis admissionsCarer health may also lead to crisis admissions Effective interventions to support care-givers Effective interventions to support care-givers

are availableare available

The strongest evidence is for individualised intervention packages for family caregivers which can improve the well-being of caregivers and help delay admissions to care homes.

Care homes and dementiaCare homes and dementia 3.2% of over 65s in Conwy supported in 3.2% of over 65s in Conwy supported in

care homes (2004-5) (2.8% across Wales)care homes (2004-5) (2.8% across Wales) Estimates suggest that 37% of people with Estimates suggest that 37% of people with

dementia live in care homesdementia live in care homes 27% of 65-74’s27% of 65-74’s 61% of over 90s61% of over 90s

As many as 75% of care home residents As many as 75% of care home residents have dementia (not reflected in proportion have dementia (not reflected in proportion of places registered – approx. one third)of places registered – approx. one third)

Nationally, difficulties in staffing are Nationally, difficulties in staffing are reportedreported

Approaches to Dementia Approaches to Dementia Questionnaire (ADQ)Questionnaire (ADQ)

Attitudes to dementia scale – Lintern & Woods Attitudes to dementia scale – Lintern & Woods

(2000)(2000)

19 statements about people with dementia, each 19 statements about people with dementia, each

rated on 5-point scale: ‘Strongly disagree’ to rated on 5-point scale: ‘Strongly disagree’ to

‘Strongly agree’‘Strongly agree’

Developed on sample of 124 staff in care homesDeveloped on sample of 124 staff in care homes

Factor Analysis identified two componentsFactor Analysis identified two components HopeHope Recognition of PersonhoodRecognition of Personhood

Hope - sample items: Hopeful Hope - sample items: Hopeful staff disagree with:staff disagree with:

Unable to make decisions for themselvesUnable to make decisions for themselves Very much like childrenVery much like children Nothing can be done except keep them Nothing can be done except keep them

clean & tidyclean & tidy There is no hope for people with There is no hope for people with

dementiadementia They are sick and need to be looked afterThey are sick and need to be looked after

Recognition of personhood Recognition of personhood - sample items- sample items

Important to respond with empathy / Important to respond with empathy / understandingunderstanding

Need to feel respected just like Need to feel respected just like anybody elseanybody else

Important to care for psychological Important to care for psychological and physical needsand physical needs

Spending time with them can be very Spending time with them can be very enjoyableenjoyable

Staff quality of life and well-Staff quality of life and well-beingbeing

Many factors contribute to these aspectsMany factors contribute to these aspects Levels of distress and burn-out amongst Levels of distress and burn-out amongst

staff are relatively lowstaff are relatively low Zimmerman et al (2005) Gerontologist Zimmerman et al (2005) Gerontologist

Special Issue 96-105: Special Issue 96-105: 154 direct care staff in 41 facilities154 direct care staff in 41 facilities Person-centred attitudes (ADQ) related to job Person-centred attitudes (ADQ) related to job

satisfaction (especially with patient contact)satisfaction (especially with patient contact) Staff who perceive themselves to be better Staff who perceive themselves to be better

trained in dementia care report more person-trained in dementia care report more person-centred attitudes and more job satisfactioncentred attitudes and more job satisfaction

Do staff attitudes relate to Do staff attitudes relate to quality of life of person with quality of life of person with

dementia?dementia? Large study in USA reported by Large study in USA reported by

Zimmerman et al., 2005 (Gerontologist)Zimmerman et al., 2005 (Gerontologist) 421 residents in 45 residential care / 421 residents in 45 residential care /

assisted living facilities & nursing assisted living facilities & nursing homeshomes

‘‘From the resident’s perspective, From the resident’s perspective, quality of life was higher for those in quality of life was higher for those in facilities…whose care providers felt facilities…whose care providers felt more hope’.more hope’.

Do staff attitudes relate to Do staff attitudes relate to quality of life of person with quality of life of person with

dementia? - 2dementia? - 2 Hope (from ADQ) related to two resident Hope (from ADQ) related to two resident

self-report QoL measures and to DCM self-report QoL measures and to DCM observations of well-being.observations of well-being.

Total ADQ score and Person-centred Total ADQ score and Person-centred attitudes also related to staff reports of the attitudes also related to staff reports of the person with dementia’s QoL.person with dementia’s QoL.

Encouragement of activities and amount Encouragement of activities and amount of verbal communication with staff and of verbal communication with staff and family involvement also related to QoL family involvement also related to QoL and/or well-beingand/or well-being

The importance of positive The importance of positive attitudes and hope…attitudes and hope…

Positive attitudes are associated with Positive attitudes are associated with higher quality of care and higher quality of higher quality of care and higher quality of life for people with dementialife for people with dementia

Positive attitudes are also associated with Positive attitudes are also associated with higher job satisfactionhigher job satisfaction

Hopefulness regarding dementia an Hopefulness regarding dementia an important component of staff attitudes important component of staff attitudes related to quality carerelated to quality care

Positive attitudes are improved by training Positive attitudes are improved by training (but training is not enough!)(but training is not enough!)

Staff need person-centred approach too!Staff need person-centred approach too!

Lesson 5Lesson 5

Hope makes a differenceHope makes a difference

Psychosocial interventionsPsychosocial interventions

A number of interventions now have A number of interventions now have a good evidence base e.g.a good evidence base e.g. Cognitive stimulationCognitive stimulation Reminiscence groupsReminiscence groups Life review / life story booksLife review / life story books Cognitive rehabilitationCognitive rehabilitation Creative approachesCreative approaches

Cognitive function and QoLCognitive function and QoL

Cognitive Stimulation Cognitive Stimulation Therapy (CST) – Therapy (CST) – evidence-based evidence-based intervention – small intervention – small groups – 14 sessionsgroups – 14 sessions

Evaluated in large Evaluated in large randomised controlled randomised controlled trial (Spector et al., trial (Spector et al., 2003)2003)

Treatment and Control Groups - differences between baseline and

follow up: Cognition (n=201)

MMSEp=0.04

ADASp=0.01

-1

0

1

2

3

chan

ge treatment

control

Treatment and Control Groups - differences between baseline and follow up: Quality of Life (n=201)

p=0.03

-1

-0.5

0

0.5

1

1.5

1

QOL

chan

ge treatment

control

Cognitive rehabilitation for Cognitive rehabilitation for people in early stages of people in early stages of

dementiadementia The development of the interventionThe development of the intervention

Single-case studies (Clare, 1999; 2000; 2001)Single-case studies (Clare, 1999; 2000; 2001) Manual – 8 individual sessionsManual – 8 individual sessions

Examples of personal rehabilitation goalsExamples of personal rehabilitation goals Using a notebook or diary to keep track of Using a notebook or diary to keep track of

eventsevents Keeping track of spectacles or keysKeeping track of spectacles or keys Managing medicationManaging medication Making and using a memory bookMaking and using a memory book Taking up writing againTaking up writing again Remembering names of partners at bridge clubRemembering names of partners at bridge club Learning to use a mobile phone Learning to use a mobile phone

Cognitive rehabilitation for Cognitive rehabilitation for people in early stages of people in early stages of

dementia dementia (Clare, Woods, Linden et al: American Journal of (Clare, Woods, Linden et al: American Journal of

Geriatric Psychiatry 2010)Geriatric Psychiatry 2010) 3-arm single-blind RCT for people in early-stage 3-arm single-blind RCT for people in early-stage

Alzheimer’s (MMSE 18+), stable on donepezilAlzheimer’s (MMSE 18+), stable on donepezil Cognitive Rehabilitation v relaxation v usual treatmentCognitive Rehabilitation v relaxation v usual treatment Funded by Alzheimer’s SocietyFunded by Alzheimer’s Society recruited from Memory Clinics in North Walesrecruited from Memory Clinics in North Wales Primary outcome Canadian Occupational Performance Primary outcome Canadian Occupational Performance

Measure (COPM) – goal performance and satisfactionMeasure (COPM) – goal performance and satisfaction fMRI data for a sub-sample on an associative learning fMRI data for a sub-sample on an associative learning

(face-name) task(face-name) task Participants: 69 people (41 female, 28 male; mean age Participants: 69 people (41 female, 28 male; mean age

77.78, sd 6.32, range 56 – 89) with a diagnosis of 77.78, sd 6.32, range 56 – 89) with a diagnosis of Alzheimer’s or mixed Alzheimer’s and vascular dementiaAlzheimer’s or mixed Alzheimer’s and vascular dementia

Goal performance and Goal performance and satisfactionsatisfaction

CogRehab improves significantly v relaxation and CogRehab improves significantly v relaxation and control groups (p<0.001); 96% of goals set by control groups (p<0.001); 96% of goals set by

CogRehab participants fully or partially achievedCogRehab participants fully or partially achieved

0

1

2

3

4

5

6

7

Baseline Post Baseline Post

CogRehab (22)

Relaxation (24)

Control (20)

COPM - Performance

COPM - Satisfaction

REMCAREREMCARE

Pragmatic randomised controlled trial of Pragmatic randomised controlled trial of joint reminiscence groups for people with joint reminiscence groups for people with dementia and their family carersdementia and their family carers

Primary outcomes:Primary outcomes: Person with dementia – quality of lifePerson with dementia – quality of life Care-giver – psychological distressCare-giver – psychological distress

Cost-effectiveness study, funded by NIHR HTACost-effectiveness study, funded by NIHR HTA 42 month study, commenced December 142 month study, commenced December 1stst 2007 2007 Follows treatment manual developed in trial Follows treatment manual developed in trial

platform (Schweitzer & Bruce, 2008)platform (Schweitzer & Bruce, 2008) 488 people with dementia and carers recruited 488 people with dementia and carers recruited 8 centres ran 3-4 groups of 8 – 12 dyads8 centres ran 3-4 groups of 8 – 12 dyads Control – treatment as usualControl – treatment as usual

Lesson 6Lesson 6

Our life story shapes the Our life story shapes the present and the future present and the future

Life review and people with Life review and people with dementia dementia (Morgan & Woods, 2010)(Morgan & Woods, 2010)

Randomised controlled trialRandomised controlled trial 17 people with mild or moderate dementia 17 people with mild or moderate dementia

(average age 83)(average age 83)

Admitted to residential / nursing home care Admitted to residential / nursing home care in last 18 months in last 18 months (average 8 months)(average 8 months)

Intervention group took part in life-review Intervention group took part in life-review using Haight’s Life Review Experiencing using Haight’s Life Review Experiencing FormForm chronologicalchronological evaluativeevaluative

Life review and people with Life review and people with dementiadementia

Around 12 sessions per residentAround 12 sessions per resident Life story book created for each residentLife story book created for each resident Resident had editorial controlResident had editorial control Input sought from person’s familyInput sought from person’s family Control group - no additional inputControl group - no additional input Measures includedMeasures included

Geriatric Depression Scale (15 item version)Geriatric Depression Scale (15 item version) Autobiographical Memory InterviewAutobiographical Memory Interview

Life review and people with Life review and people with dementiadementia

Initial depression levels highInitial depression levels high Depression improves especially in Depression improves especially in

post-treatment periodpost-treatment period Autobiographical memory improves, Autobiographical memory improves,

especially during treatment - especially during treatment - maintained at follow-upmaintained at follow-up

This work demands clinical skills and This work demands clinical skills and supervisionsupervision

The impact of life review - The impact of life review - John John

““Yes, I have remembered a lot more Yes, I have remembered a lot more today, but that’s because the book today, but that’s because the book sets things off in my head, it helps sets things off in my head, it helps me remember all sorts of things and me remember all sorts of things and reminds me of things I have reminds me of things I have forgotten”forgotten” ‘‘John’ at follow-up (age 83 - moderate John’ at follow-up (age 83 - moderate

dementia) GDS fell from 11 to 6dementia) GDS fell from 11 to 6

The impact of life review - The impact of life review - Sian (2)Sian (2)

Follow-up: “Everyone who has seen the Follow-up: “Everyone who has seen the book loves it! People keep coming to book loves it! People keep coming to my room to see it. My son thinks it’s my room to see it. My son thinks it’s wonderful - he wants to keep it after I wonderful - he wants to keep it after I die - he’s really proud of me and what die - he’s really proud of me and what I’ve done with my life. I’ll have to keep I’ve done with my life. I’ll have to keep an eye on it, in case someone takes an eye on it, in case someone takes it.”it.” ‘‘Sian’ - age 79, mild dementia; initial GDS Sian’ - age 79, mild dementia; initial GDS

- 9; final GDS 3.- 9; final GDS 3.

Summary – what can we Summary – what can we learn?learn?

1.1. I’m still a personI’m still a person2.2. I’m still living – quality of life is possible I’m still living – quality of life is possible

in dementiain dementia3.3. The importance of relationshipsThe importance of relationships4.4. Those who provide care must be valuedThose who provide care must be valued5.5. Hope makes a differenceHope makes a difference6.6. Our life story shapes the present and the Our life story shapes the present and the

futurefuture7.7. Dignity must be maintainedDignity must be maintained

Battlers and WarriorsBattlers and Warriors

We are the broken and damaged,We are the broken and damaged,

but with the help of the great fraternity,but with the help of the great fraternity,

the fraternity of the warriors of the blue the fraternity of the warriors of the blue elephant and the battlers from Llandygaielephant and the battlers from Llandygai

We may not fly like eagles but we will keep We may not fly like eagles but we will keep our dignity. our dignity.

When the great Amen has sounded, When the great Amen has sounded,

we will have kept our dignitywe will have kept our dignity

When the knell has sounded,When the knell has sounded,

we will have kept our dignity.we will have kept our dignity.

John Barclay. October 18John Barclay. October 18thth 2005 2005

AcknowledgementsAcknowledgementsb.woods@bangor.ac.ukb.woods@bangor.ac.uk

DSDC and Dementia Research teams at DSDC and Dementia Research teams at Bangor University, UCL, Hull, Manchester, Bangor University, UCL, Hull, Manchester, BradfordBradford

Professor Linda ClareProfessor Linda Clare DSDC Training Officer – Joan WoodsDSDC Training Officer – Joan Woods Our funders: WAG NISCHR, NIHR, HTA, MRC, Our funders: WAG NISCHR, NIHR, HTA, MRC,

ESRC etc.ESRC etc. Memory clinics, care homes and other Memory clinics, care homes and other

services in North Wales and across UKservices in North Wales and across UK Above all, all those people with dementia and Above all, all those people with dementia and

their carers who have contributed so muchtheir carers who have contributed so much