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What can we learn from people with Alzheimer’s disease? Professor Bob Woods Dementia Services Development Centre Wales Bangor University.

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Presentation on theme: "What can we learn from people with Alzheimer’s disease? Professor Bob Woods Dementia Services Development Centre Wales Bangor University."— Presentation transcript:

1 What can we learn from people with Alzheimer’s disease? Professor Bob Woods Dementia Services Development Centre Wales Bangor University

2 Alzheimer’s disease and dementia? Are they the same thing? Are they the same thing? Yes and No! Yes and No! Dementia is the family name for a number of conditions, of which Alzheimer’s disease is the most common Dementia is the family name for a number of conditions, of which Alzheimer’s disease is the most common So, Alzheimer’s disease is a dementia, but not all dementia is Alzheimer’s disease So, Alzheimer’s disease is a dementia, but not all dementia is Alzheimer’s disease

3 So what is dementia? An acquired impairment An acquired impairment Global cognitive functions (memory plus) Global cognitive functions (memory plus) Self-care and day-to-day function Self-care and day-to-day function Clear consciousness Clear consciousness Usually progressive Usually progressive Behavioural and psychological symptoms may include wandering, aggression, apathy, hallucinations, loss of inhibitions, repetition etc. Behavioural and psychological symptoms may include wandering, aggression, apathy, hallucinations, loss of inhibitions, repetition etc.

4 The scale of the condition – prevalence (Dementia UK report) <650.1% <650.1% % % % % % % % % % % % % % %

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

6 An older population

7 North Wales Number of people with dementia projected to increase by 35% by the year 2021 Number of people with dementia projected to increase by 35% by the year 2021 (Alzheimer’s Society, UK Dementia Report, 2007) (Alzheimer’s Society, UK Dementia Report, 2007)

8 Dementia UK report

9 Prevalence of dementia in Conwy (Dementia UK report, 2007) Total % of over 65s % of total pop. Men Women131331,2461, Total312801,7512, Projected by ,3822,

10 Estimates of numbers of YPWD (30-64) in North Wales (Dementia UK report, 2007) MaleFemaleTotal Anglesey12820 Conwy Denbigh Flintshire Gwynedd Wrexham Totals

11 Common types of dementia (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) - 2% Fronto-temporal dementia (including Pick’s) - 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 changes, evident at post-mortem Each type associated with distinct brain changes, evident at post-mortem

12 105 years ago… In 1906, Alois Alzheimer described the case of Auguste D. (died aged 55) In 1906, Alois Alzheimer described the case of Auguste D. (died aged 55) Memory loss, disorientation, hallucinations Memory loss, disorientation, hallucinations ‘an unusual disease of the cerebral cortex’ – plaques and tangles ‘an unusual disease of the cerebral cortex’ – plaques and tangles

13 But what does it mean for a person to have dementia? The public view The public view Tragedy? Tragedy? Suffering? Suffering? A living death? A living death?

14

15 Contrasting images (1989)

16 But what does it mean for a person to have dementia? The public view The 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?

17 Lesson 1 ‘I’m still a person’

18 Personhood and dementia It is a ‘Hypercognitive culture’ which categorizes those with severe dementia as ‘non-persons’ (Post, 1995) It is a ‘Hypercognitive culture’ which categorizes those with severe dementia as ‘non-persons’ (Post, 1995) Abilities and capacities do remain - not all is lost Abilities and capacities do remain - not all is lost Emotional sensitivity and spiritual awareness possible (Sacks, 1985) Emotional sensitivity and spiritual awareness possible (Sacks, 1985) Aesthetic and relational aspects of well-being possible in severe dementia (Post, 1998) Aesthetic and relational aspects of well-being possible in severe dementia (Post, 1998)

19 Creativity in dementia – Willem de Kooning “'Style,' neurologically, is the deepest part of one's being, and may be preserved, almost to the last, in a dementia." (Sacks) “'Style,' neurologically, is the deepest part of one's being, and may be preserved, almost to the last, in a dementia." (Sacks) “De Kooning's art in the '80s lost much of its former character, most obviously athletic vigor, while not only retaining a de Kooning-esque feel but introducing unexampled levels and resources of style. These paintings stand alone in his career and in the world.” “De Kooning's art in the '80s lost much of its former character, most obviously athletic vigor, while not only retaining a de Kooning-esque feel but introducing unexampled levels and resources of style. These paintings stand alone in his career and in the world.” Schjeldahl 1997 Arts Forum Schjeldahl 1997 Arts Forum

20 Creativity in dementia – Willem de Kooning “What does "knowing how to paint" mean? Nothing in theory, practically anything in practice. Late de Koonings strike me as embodied theories of painting: meaning nothing, and meaning it with precision. They are pictures of pure capacity. The work entails fantastic abilities not even for their own sake, but for no sake.” “What does "knowing how to paint" mean? Nothing in theory, practically anything in practice. Late de Koonings strike me as embodied theories of painting: meaning nothing, and meaning it with precision. They are pictures of pure capacity. The work entails fantastic abilities not even for their own sake, but for no sake.” “I propose that late de Kooning is the degree zero of painting, attained not through simplification but, fully complex, through being emptied of anything not identical with its execution. This work henceforth defines the verb to paint.” “I propose that late de Kooning is the degree zero of painting, attained not through simplification but, fully complex, through being emptied of anything not identical with its execution. This work henceforth defines the verb to paint.” Schjeldahl 1997 Arts Forum Schjeldahl 1997 Arts Forum

21 Lesson 2 ‘I’m still living’ – quality of life is possible in dementia

22 How can we evaluate Quality of Life (QoL) in dementia? QOL-AD (Logsdon et al, 1999) QOL-AD (Logsdon et al, 1999) Simple self-report measure of QoL Simple self-report measure of QoL 13 items, 4 point scale 13 items, 4 point scale E.g. Energy; Fun; Money; Physical health; Friends; Family etc. E.g. Energy; Fun; Money; Physical health; Friends; Family etc. Completed in interview with person Completed in interview with person Domains validated from focus groups (people with dementia & carers) & questionnaires (professionals) Domains validated from focus groups (people with dementia & carers) & questionnaires (professionals)

23 Can you rely on what people with dementia tell you about 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 interviewer Scores 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’ agreement Sub-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)

24 Does QoL decline as memory gets worse? Sample of 201 people with dementia in residential homes / day centres (MMSE 14.4/30 sd 3.8) Sample of 201 people with dementia in residential homes / day centres (MMSE 14.4/30 sd 3.8) QOL-AD not associated with memory and cognition measures such as ADAS-Cog or MMSE QOL-AD not associated with memory and cognition measures such as ADAS-Cog or MMSE Higher in those with moderate dementia than in those with mild dementia on clinical dementia rating Higher in those with moderate dementia than in those with mild dementia on clinical dementia rating Relates to depression, not cognition Relates to depression, not cognition (Thorgrimsen et al., 2003) (Thorgrimsen et al., 2003)

25 Does QoL reflect lack of insight and awareness? 100 people with early-stage dementia and their carers in North Wales were interviewed 100 people with early-stage dementia and their carers in North Wales were interviewed Awareness evaluated in several ways: Awareness evaluated in several ways: Global rating of interview Global rating of interview Discrepancies between person’s rating of function in 3 domains and those made by carer Discrepancies between person’s rating of function in 3 domains and those made by carer Memory * Memory * Day-to-day function * Day-to-day function * Social function Social function Discrepancy between performance on a memory test and the person’s rating of their performance Discrepancy between performance on a memory test and the person’s rating of their performance There is a small degree of association between some measures of awareness and QoL-AD scores, but mediated by depression scores There is a small degree of association between some measures of awareness and QoL-AD scores, but mediated by depression scores (Clare, Woods et al. – the MIDAS project) (Clare, Woods et al. – the MIDAS project)

26 ‘We’re LIVING with dementia, not dying from it!’ ‘We’re LIVING with dementia, not dying from it!’ The ACE Club (for younger people with dementia and their carers), Rhyl Alzheimer’s Society Living with Dementia programme

27 Lesson 3 The importance of relationships

28 Quality of life and quality of relationship Long-established findings that quality of relationship, as rated by care-giver, predicts carer’s level of strain / depression (e.g. Morris et al., 1988; Williamson & Schulz, 1990) Long-established findings that quality of relationship, as rated by care-giver, predicts carer’s level of strain / depression (e.g. Morris et al., 1988; Williamson & Schulz, 1990) Could person with dementia also rate the relationship? Could person with dementia also rate the relationship?

29 Can people with dementia rate the quality of the relationship? 77 people with dementia and care-givers participated 77 people with dementia and care-givers participated Person with dementia average age 77.5; 57% female Person with dementia average age 77.5; 57% female Care-giver average age 68.9; 62% female Care-giver average age 68.9; 62% female 78% spouses; 90% co-resident 78% spouses; 90% co-resident Mean duration of memory problems 3.1 years (range 1-10) Mean duration of memory problems 3.1 years (range 1-10) 60% of carers inputting more than 50 hours per week 60% of carers inputting more than 50 hours per week 16% carers report significant symptoms of depression (GDS-15) 16% carers report significant symptoms of depression (GDS-15) Interactions video-taped – puzzle and meal planning minutes Interactions video-taped – puzzle and meal planning minutes

30 Can people with dementia rate the quality of the relationship? - 2 Several brief relationship questionnaires were tested Several brief relationship questionnaires were tested People with dementia were able to complete these consistently and reliably People with dementia were able to complete these consistently and reliably Positive Affect (PA) Index (Bengston, 1973) Positive Affect (PA) Index (Bengston, 1973) 5 items 5 items 6 point scale (visually presented) 6 point scale (visually presented) Communication quality, closeness, similarity of views on life, engaging in joint activities, overall relationship quality Communication quality, closeness, similarity of views on life, engaging in joint activities, overall relationship quality Quality of the Care-giving Relationship - QCPR (Spruytte 2002) Quality of the Care-giving Relationship - QCPR (Spruytte 2002) 14 items 14 items 5 point scale (visually presented) 5 point scale (visually presented) Two sub-scales: warmth and absence of criticism Two sub-scales: warmth and absence of criticism

31 Did people with dementia and carers agree in their ratings? Good agreement on warmth and positive affect Good agreement on warmth and positive affect Less agreement on criticism Less agreement on criticism Carers rate the relationship less positively Carers rate the relationship less positively

32 Different perspectives? What predicts difference in scores between person with dementia and carer: What predicts difference in scores between person with dementia and carer: Positive Affect Index: Relative’s Stress Scale only predictor (8% of variance) Positive Affect Index: Relative’s Stress Scale only predictor (8% of variance) QCPR: Relative’s Stress Scale only predictor (32% of variance) QCPR: Relative’s Stress Scale only predictor (32% of variance) Severity of memory impairment not related to differences! Severity of memory impairment not related to differences!

33 Association between relationship ratings and ratings on video-interaction tasks Person with dementia ratings predict video-interaction ratings just as well as carer ratings Person with dementia ratings predict video-interaction ratings just as well as carer ratings

34 Quality of life of the person with dementia (QoL-AD rated by person with dementia) QoL-AD relates to Positive Affect Scale and QCPR (warmth) as rated by person with dementia QoL-AD relates to Positive Affect Scale and QCPR (warmth) as rated by person with dementia QoL-AD does not relate to ratings of QCPR (criticism) by person with dementia QoL-AD does not relate to ratings of QCPR (criticism) by person with dementia

35 Quality of life of the person with dementia (QoL-AD rated by person with dementia) QCPR (warmth) rated by person with dementia is the best predictor of QoL-AD QCPR (warmth) rated by person with dementia 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 (CDR), depression (Cornell), anxiety (RAID), Relative’s Stress Scale and carer depression (GDS) do not significantly add to the prediction Age, gender, MMSE, dementia severity (CDR), depression (Cornell), anxiety (RAID), Relative’s Stress Scale and carer depression (GDS) do not significantly add to the prediction Previous studies (e.g. Thorgrimsen et al., 2003) suggest depression is main identifiable factor in predicting QoL-AD Previous studies (e.g. Thorgrimsen et al., 2003) suggest depression is main identifiable factor in predicting QoL-AD

36 Relative’s Stress Scale Strong negative associations with: Strong negative associations with: Person with dementia Positive affect index Person with dementia Positive affect index Carer’s Positive affect index Carer’s Positive affect index Person with dementia QCPR warmth Person with dementia QCPR warmth Carer QCPR warmth subscale Carer QCPR warmth subscale Carer QCPR absence of criticism scale Carer QCPR absence of criticism scale

37 Relationships Care-giving occurs in the context of (often) a long-standing relationship Care-giving occurs in the context of (often) a long-standing relationship Many people with dementia are able to reliably and accurately rate the quality of the current relationship Many people with dementia are able to reliably and accurately rate the quality of the current relationship The quality of the relationship may be observed through observation of structured tasks The quality of the relationship may be observed through observation of structured tasks The quality of life of the person with dementia and the stress experienced by the carer are associated with the quality of the current relationship The quality of life of the person with dementia and the stress experienced by the carer are associated with the quality of the current relationship The differences in perception may be attributable in part to carer stress The differences in perception may be attributable in part to carer stress

38 Personhood in relationship “Personhood is a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being.” (Kitwood, 1997) “Personhood is a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being.” (Kitwood, 1997) High profile examples: High profile examples: Malcolm & Barbara Poynton Malcolm & Barbara Poynton Iris Murdoch & John Bayley Iris Murdoch & John Bayley

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

40 Lesson 4 Those who provide care must be valued

41 The impact on families Family care is major source of support for people with dementia – spouses and adult children Family care is major source of support for people with dementia – spouses and adult children Around 25% of family carers experience high levels of distress Around 25% of family carers experience high levels of distress Associated with reduced life expectancy in carers Associated with reduced life expectancy in carers Challenging behaviour is major contributor to carer stress, and breakdown of care at home Challenging behaviour is major contributor to carer stress, and breakdown of care at home Carer health may also lead to crisis admissions Carer health may also lead to crisis admissions Effective interventions to support care-givers are available Effective interventions to support care-givers are available

42 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.

43 Care homes and dementia 3.2% of over 65s in Conwy supported in care homes (2004-5) (2.8% across Wales) 3.2% of over 65s in Conwy supported in care homes (2004-5) (2.8% across Wales) Estimates suggest that 37% of people with dementia live in care homes Estimates suggest that 37% of people with dementia live in care homes 27% of 65-74’s 27% of 65-74’s 61% of over 90s 61% of over 90s As many as 75% of care home residents have dementia (not reflected in proportion of places registered – approx. one third) As many as 75% of care home residents have dementia (not reflected in proportion of places registered – approx. one third) Nationally, difficulties in staffing are reported Nationally, difficulties in staffing are reported

44 Approaches to Dementia Questionnaire (ADQ) Attitudes to dementia scale – Lintern & Woods (2000) Attitudes to dementia scale – Lintern & Woods (2000) 19 statements about people with dementia, each rated on 5-point scale: ‘Strongly disagree’ to ‘Strongly agree’ 19 statements about people with dementia, each rated on 5-point scale: ‘Strongly disagree’ to ‘Strongly agree’ Developed on sample of 124 staff in care homes Developed on sample of 124 staff in care homes Factor Analysis identified two components Factor Analysis identified two components Hope Hope Recognition of Personhood Recognition of Personhood

45 Hope - sample items: Hopeful staff disagree with: Unable to make decisions for themselves Unable to make decisions for themselves Very much like children Very much like children Nothing can be done except keep them clean & tidy Nothing can be done except keep them clean & tidy There is no hope for people with dementia There is no hope for people with dementia They are sick and need to be looked after They are sick and need to be looked after

46 Recognition of personhood - sample items Important to respond with empathy / understanding Important to respond with empathy / understanding Need to feel respected just like anybody else Need to feel respected just like anybody else Important to care for psychological and physical needs Important to care for psychological and physical needs Spending time with them can be very enjoyable Spending time with them can be very enjoyable

47 Staff quality of life and well-being Many factors contribute to these aspects Many factors contribute to these aspects Levels of distress and burn-out amongst staff are relatively low Levels of distress and burn-out amongst staff are relatively low Zimmerman et al (2005) Gerontologist Special Issue : Zimmerman et al (2005) Gerontologist Special Issue : 154 direct care staff in 41 facilities 154 direct care staff in 41 facilities Person-centred attitudes (ADQ) related to job satisfaction (especially with patient contact) Person-centred attitudes (ADQ) related to job satisfaction (especially with patient contact) Staff who perceive themselves to be better trained in dementia care report more person-centred attitudes and more job satisfaction Staff who perceive themselves to be better trained in dementia care report more person-centred attitudes and more job satisfaction

48 Do staff attitudes relate to quality of life of person with dementia? Large study in USA reported by Zimmerman et al., 2005 (Gerontologist) Large study in USA reported by Zimmerman et al., 2005 (Gerontologist) 421 residents in 45 residential care / assisted living facilities & nursing homes 421 residents in 45 residential care / assisted living facilities & nursing homes ‘From the resident’s perspective, quality of life was higher for those in facilities…whose care providers felt more hope’. ‘From the resident’s perspective, quality of life was higher for those in facilities…whose care providers felt more hope’.

49 Do staff attitudes relate to quality of life of person with dementia? - 2 Hope (from ADQ) related to two resident self- report QoL measures and to DCM observations of well-being. Hope (from ADQ) related to two resident self- report QoL measures and to DCM observations of well-being. Total ADQ score and Person-centred attitudes also related to staff reports of the person with dementia’s QoL. Total ADQ score and Person-centred attitudes also related to staff reports of the person with dementia’s QoL. Encouragement of activities and amount of verbal communication with staff and family involvement also related to QoL and/or well- being Encouragement of activities and amount of verbal communication with staff and family involvement also related to QoL and/or well- being

50 The importance of positive attitudes and hope… Positive attitudes are associated with higher quality of care and higher quality of life for people with dementia Positive attitudes are associated with higher quality of care and higher quality of life for people with dementia Positive attitudes are also associated with higher job satisfaction Positive attitudes are also associated with higher job satisfaction Hopefulness regarding dementia an important component of staff attitudes related to quality care Hopefulness regarding dementia an important component of staff attitudes related to quality care Positive attitudes are improved by training (but training is not enough!) Positive attitudes are improved by training (but training is not enough!) Staff need person-centred approach too! Staff need person-centred approach too!

51 Lesson 5 Hope makes a difference

52 Psychosocial interventions A number of interventions now have a good evidence base e.g. A number of interventions now have a good evidence base e.g. Cognitive stimulation Cognitive stimulation Reminiscence groups Reminiscence groups Life review / life story books Life review / life story books Cognitive rehabilitation Cognitive rehabilitation Creative approaches Creative approaches

53 Cognitive function and QoL Cognitive Stimulation Therapy (CST) – evidence- based intervention – small groups – 14 sessions Cognitive Stimulation Therapy (CST) – evidence- based intervention – small groups – 14 sessions Evaluated in large randomised controlled trial (Spector et al., 2003) Evaluated in large randomised controlled trial (Spector et al., 2003)

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56 Cognitive rehabilitation for people in early stages of dementia The development of the intervention The development of the intervention Single-case studies (Clare, 1999; 2000; 2001) Single-case studies (Clare, 1999; 2000; 2001) Manual – 8 individual sessions Manual – 8 individual sessions Examples of personal rehabilitation goals Examples of personal rehabilitation goals Using a notebook or diary to keep track of events Using a notebook or diary to keep track of events Keeping track of spectacles or keys Keeping track of spectacles or keys Managing medication Managing medication Making and using a memory book Making and using a memory book Taking up writing again Taking up writing again Remembering names of partners at bridge club Remembering names of partners at bridge club Learning to use a mobile phone Learning to use a mobile phone

57 Cognitive rehabilitation for people in early stages of dementia (Clare, Woods, Linden et al: American Journal of Geriatric Psychiatry 2010) 3-arm single-blind RCT for people in early-stage Alzheimer’s (MMSE 18+), stable on donepezil 3-arm single-blind RCT for people in early-stage Alzheimer’s (MMSE 18+), stable on donepezil Cognitive Rehabilitation v relaxation v usual treatment Cognitive Rehabilitation v relaxation v usual treatment Funded by Alzheimer’s Society Funded by Alzheimer’s Society recruited from Memory Clinics in North Wales recruited from Memory Clinics in North Wales Primary outcome Canadian Occupational Performance Measure (COPM) – goal performance and satisfaction Primary outcome Canadian Occupational Performance Measure (COPM) – goal performance and satisfaction fMRI data for a sub-sample on an associative learning (face- name) task fMRI data for a sub-sample on an associative learning (face- name) task Participants: 69 people (41 female, 28 male; mean age 77.78, sd 6.32, range 56 – 89) with a diagnosis of Alzheimer’s or mixed Alzheimer’s and vascular dementia Participants: 69 people (41 female, 28 male; mean age 77.78, sd 6.32, range 56 – 89) with a diagnosis of Alzheimer’s or mixed Alzheimer’s and vascular dementia

58 Goal performance and satisfaction CogRehab improves significantly v relaxation and control groups (p<0.001); 96% of goals set by CogRehab participants fully or partially achieved COPM - PerformanceCOPM - Satisfaction

59 REMCARE Pragmatic randomised controlled trial of Pragmatic randomised controlled trial of joint reminiscence groups for people with dementia and their family carers Primary outcomes: Primary outcomes: Person with dementia – quality of life Person with dementia – quality of life Care-giver – psychological distress Care-giver – psychological distress Cost-effectiveness study, funded by NIHR HTA Cost-effectiveness study, funded by NIHR HTA 42 month study, commenced December 1 st month study, commenced December 1 st 2007 Follows treatment manual developed in trial platform (Schweitzer & Bruce, 2008) Follows treatment manual developed in trial 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 dyads 8 centres ran 3-4 groups of 8 – 12 dyads Control – treatment as usual Control – treatment as usual

60 Lesson 6 Our life story shapes the present and the future

61 Life review and people with dementia (Morgan & Woods, 2010)  Randomised controlled trial  17 people with mild or moderate dementia (average age 83)  Admitted to residential / nursing home care in last 18 months (average 8 months)  Intervention group took part in life-review using Haight’s Life Review Experiencing Form  chronological  evaluative

62 Life review and people with dementia  Around 12 sessions per resident  Life story book created for each resident  Resident had editorial control  Input sought from person’s family  Control group - no additional input  Measures included  Geriatric Depression Scale (15 item version)  Autobiographical Memory Interview

63 Life review and people with dementia  Initial depression levels high  Depression improves especially in post- treatment period  Autobiographical memory improves, especially during treatment - maintained at follow-up  This work demands clinical skills and supervision

64 The impact of life review - John  “Yes, I have remembered a lot more today, but that’s because the book sets things off in my head, it helps me remember all sorts of things and reminds me of things I have forgotten”  ‘John’ at follow-up (age 83 - moderate dementia) GDS fell from 11 to 6

65 The impact of life review - Sian (2)  Follow-up: “Everyone who has seen the book loves it! People keep coming to my room to see it. My son thinks it’s wonderful - he wants to keep it after I die - he’s really proud of me and what I’ve done with my life. I’ll have to keep an eye on it, in case someone takes it.”  ‘Sian’ - age 79, mild dementia; initial GDS - 9; final GDS 3.

66 Summary – what can we learn? 1. I’m still a person 2. I’m still living – quality of life is possible in dementia 3. The importance of relationships 4. Those who provide care must be valued 5. Hope makes a difference 6. Our life story shapes the present and the future 7. Dignity must be maintained

67 Battlers and Warriors We are the broken and damaged, but with the help of the great fraternity, the fraternity of the warriors of the blue elephant and the battlers from Llandygai We may not fly like eagles but we will keep our dignity. When the great Amen has sounded, we will have kept our dignity When the knell has sounded, we will have kept our dignity. we will have kept our dignity. John Barclay. October 18 th 2005

68 Acknowledgements DSDC and Dementia Research teams at Bangor University, UCL, Hull, Manchester, Bradford DSDC and Dementia Research teams at Bangor University, UCL, Hull, Manchester, Bradford Professor Linda Clare Professor Linda Clare DSDC Training Officer – Joan Woods DSDC Training Officer – Joan Woods Our funders: WAG NISCHR, NIHR, HTA, MRC, ESRC etc. Our funders: WAG NISCHR, NIHR, HTA, MRC, ESRC etc. Memory clinics, care homes and other services in North Wales and across UK Memory clinics, care homes and other services in North Wales and across UK Above all, all those people with dementia and their carers who have contributed so much Above all, all those people with dementia and their carers who have contributed so much


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