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

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? Yes and No! 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

3. So what is dementia? An acquired impairment Global cognitive functions (memory plus) Self-care and day-to-day function Clear consciousness Usually progressive 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) <65 0.1% 65-69 1.3% 70-74 2.9% 75-79 5.9% 80-84 12.2% 85-89 20.3% 90-94 28.6% 95+ 32.5%

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

8. Dementia UK report

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

10. Estimates of numbers of YPWD (30-64) in North Wales (Dementia UK report, 2007)

11. Common types of dementia (UK Dementia Report, 2007) Alzheimer’s disease - 62% Vascular (multi-infarct) - 17% Mixed Alzheimer’s & Vascular - 10% Lewy Body dementia - 4% Fronto-temporal dementia (including Pick’s) - 2% Parkinson’s Disease Dementia – 2% Other (including alcohol-related, CJD etc.) - 3% 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) Memory loss, disorientation, hallucinations ‘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 • Tragedy? • Suffering? • A living death?

15. Contrasting images (1989)

16. But what does it mean for a person to have dementia? • The public view • Tragedy? • Suffering? • A living death? • Nothing can be done? • Worse than death? • 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) • Abilities and capacities do remain - not all is lost • Emotional sensitivity and spiritual awareness possible (Sacks, 1985) • Aesthetic and relational aspects of well-being possible in severe dementia (Post, 1998)

19. Creativity in dementia – Willem de Kooning 1904-1997 • “'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.” • 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.” • “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

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) • Simple self-report measure of QoL • 13 items, 4 point scale • E.g. Energy; Fun; Money; Physical health; Friends; Family etc. • Completed in interview with person • 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 • (N=201: alpha = 0.82) • 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 • Inter-rater reliability (N=38 Total score 0.96 intraclass coefficient) • Sub-scales Kappa’s 12/13 ‘excellent’ agreement • Scores are associated with observed well-being • (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) • 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 • Relates to depression, not cognition • (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 • Awareness evaluated in several ways: • Global rating of interview • Discrepancies between person’s rating of function in 3 domains and those made by carer • Memory * • Day-to-day function * • Social function • 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 • (Clare, Woods et al. – the MIDAS project)

26. ‘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) • 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 • Person with dementia average age 77.5; 57% female • Care-giver average age 68.9; 62% female • 78% spouses; 90% co-resident • Mean duration of memory problems 3.1 years (range 1-10) • 60% of carers inputting more than 50 hours per week • 16% carers report significant symptoms of depression (GDS-15) • Interactions video-taped – puzzle and meal planning 10-15 minutes

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

32. Different perspectives? • What predicts difference in scores between person with dementia and carer: • Positive Affect Index: Relative’s Stress Scale only predictor (8% of variance) • QCPR: Relative’s Stress Scale only predictor (32% of variance) • 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

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 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 • (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 • 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: • Person with dementia Positive affect index • Carer’s Positive affect index • Person with dementia QCPR warmth • Carer QCPR warmth subscale • Carer QCPR absence of criticism scale

37. Relationships • 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 • 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 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) • High profile examples: • Malcolm & Barbara Poynton • 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 Around 25% of family carers experience high levels of distress Associated with reduced life expectancy in carers Challenging behaviour is major contributor to carer stress, and breakdown of care at home Carer health may also lead to crisis admissions 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) • Estimates suggest that 37% of people with dementia live in care homes • 27% of 65-74’s • 61% of over 90s • 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

44. Approaches to Dementia Questionnaire (ADQ) Attitudes to dementia scale – Lintern & Woods (2000) 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 Factor Analysis identified two components Hope Recognition of Personhood

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

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

47. Staff quality of life and well-being • Many factors contribute to these aspects • Levels of distress and burn-out amongst staff are relatively low • Zimmerman et al (2005) Gerontologist Special Issue 96-105: • 154 direct care staff in 41 facilities • 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

48. Do staff attitudes relate to quality of life of person with dementia? • Large study in USA reported by Zimmerman et al., 2005 (Gerontologist) • 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’.

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. • 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

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 also associated with higher job satisfaction Hopefulness regarding dementia an important component of staff attitudes related to quality care Positive attitudes are improved by training (but training is not enough!) Staff need person-centred approach too!