Relationship-centred dementia care

1. Relationship-centred dementia care Professor Bob Woods Dementia Services Development Centre Wales Bangor University b.woods@bangor.ac.uk @dsdcwales

2. Welcome back! • 2011 – What can we learn from people with dementia? • 2012 – Dementia supportive communities • 2013 – Making a difference through research • 2014 – Relationship-centred care

3. Aims of the DSDC • To bring ‘care’ and ‘science’ together • To encourage evidence-based practice that is driven by values • To raise the quality of care for people living with dementia and raise their quality of life and that of those who support them

4. A quick recap: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.

5. Types of dementia • Alzheimer’s disease - 40% • Vascular (multi-infarct) - 20% • Lewy Body dementia - 15% • Mixed Alzheimer’s & Vascular - 15% • Other (including alcohol-related, CJD, Pick’s etc) - 10% • Each type associated with distinct brain changes, evident at post-mortem

6. Some good news! (Lancet, July 2013) • Compares prevalence in the 1990’s with 2010’s • Shows reduced prevalence in the most ‘at risk’ age groups • Lifestyle changes? • Remains major challenge for health and social care

7. An older older population

8. Why are relationships important in dementia care - 1 • Care and support from family and friends crucial for people living with dementia • Varies at different points in the journey • Different for different people, different relationships • Family care-givers at increased risk of stress, depression, anxiety • Spouse carers who experience care-giving as stressful have increased mortality

9. Why are relationships important in dementia care - 2 • For paid staff providing support and personal care key qualities include humanity, warmth, empathy • Paid staff need to be able to ‘relate’ to the people for whom they provide support

10. Q: How does relationship-centred care differ from person-centred care? • A: It fits well with Kitwood’s conception of person-centred care, and is a natural development of it

11. Kitwood’s person-centred theory Personwith dementia v. Personwith dementia

12. Person-centred care: 4 main elements (Brooker, 2004) • Valuing people with dementia and those who care for them (V) • Treating people as individuals (I) • Looking at the world from the perspective of the person with dementia (P) • A positive social environment in which the person living with dementia can experience relative well-being (S) • PCC = V + I + P + S

13. Personhood in relationship • Not about the person’s capabilities • Not about our ability to ‘overlook’ impairments • “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) • “I-it” vs. “I-thou” relating (cf. Martin Buber) • Personhood product of the care-giving relationship

14. “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.”

15. Personhood in dementia • “In dementia many aspects of the psyche that had, for a long time, been individual and ‘internal’, are again made over to the interpersonal milieu. Memory may have faded, but something of the past is known; identity remains intact, because others hold it in place; thoughts may have disappeared, but there are still interpersonal processes; feelings are expressed and meet a validating response; and if there is a spirituality, it will most likely be of the kind that Buber describes, where the divine is encountered in the depth of I-thou relating.” (Kitwood, 1997 pp. 69)

16. Relationship-centred care: the dementia care triangle Thepersonwith dementia Paid care-giver Family care-giver

17. 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) • Most often based on caregiver report or on caregiver perspective (e.g. expressed emotion evaluated from critical comments during interview about the person with dementia) • Could person with dementia also rate the relationship? • Can some aspects of relationship be observed?

18. 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

19. 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

20. 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

21. 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!

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

23. 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

24. 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

25. Family carers’ stress and quality of relationship (Relative’s Stress Scale) • Higher stress associated with lower quality of relationship: • 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 • Cause or effect?

26. 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

27. How does ‘awareness’ influence the person’s ratings of quality of life?

28. Awareness and quality of life • MIDAS study – 100 people with early-stage dementia living in North Wales • Interviewed three times over two years • QoL-AD predicted by male gender, low depression, quality of relationship, strong sense of self and low irritability. • Discrepancy of person’s and carer’s ratings of functional level made a small difference to ratings • Not related to cognitive impairment

29. Negative attributions and criticism from family care-givers are associated with raised stress levels in care-givers and reduced quality of life She does it just to annoy me – she could remember if she wanted to! I get him all ready to go to the day-care centre, looking clean and smart – I turn my back for 5 minutes, and he has taken his trousers off. I despair sometimes. I tell him ‘your mother has been dead for 20 years’, but he won’t listen – he always was stubborn, always had to be right….

30. Cognitive-behavioural family intervention (reduce criticism) (Marriott et al, 2000)

31. Family counselling and peer support – the New York spouse study • Mittelman et al 1995; 2004 etc.: family counselling and peer support; 406 spouse care-givers randomised controlled trial • Initial 6 sessions of individual and family counselling followed by availability of counsellor by telephone for duration of study • All participants commit to attending peer support groups • Carers in control group could also access counsellors

32. Family counselling and peer support – the New York spouse study - 2 (Mittelman et al., 2006) • Reduced depression in carers, reduced rates of institutionalisation • Long-term effects – depression rates lower 3 years later • Long-term follow-up (up to 17 years); difference in median time to placement between intervention & control groups is 557 days (Mittelman et al., 2006) • Higher levels of satisfaction with social support network over 5 year period (Drentea et al., 2006) • Changes in attributions about difficult behaviour (Mittelman et al., 2004)

33. Family counselling and peer support – the New York study - 3 • Increased time to placement accounted for by: • Increased satisfaction with social support • Reduced difficulty with behaviour problems • Reduced depression • The benefits of the intervention persist in the period when the person with dementia is admitted to a nursing home; burden and depression less for carers in the intervention group following the admission, compared with carers in the control group (Gaugler et al 2007)

34. Relationship-centred care: the dementia care triangle Thepersonwith dementia Paid care-giver Family care-giver

35. The evidence-base • Literature review • Study in North Wales (led by Diane Seddon) – 78 family members interviewed soon after relative admitted to a home – 29 interviewed again 10 months later • European study (Woods, Keady et al.) – 60 staff and 100 carers – focus groups, interviews, questionnaires etc.

36. Partners in care? • Staff: Relatives are more trouble than the residents? • Relatives: The staff are always changing and they don’t have time to talk – they never tell us what is happening.

37. Stress for care-givers may continue • ‘The careers of caregivers do not stop at the institution’s door, but continue in an altered and still stressful way. Caregivers do not give up their role: they shift their responsibilities.’ Zarit & Whitlatch (1993, p.35)

38. The extent of distress in relatives • A third of relatives visiting ‘frail older person’ living in a care home report significant psychological distress (especially spouses) (Buck et al., 1997) • Survey of members of Relatives’ Association (1996) (153 respondents) • 52% anxiety level above normal range • 41% depression levels above normal range • 81% sometimes feel have let the person down • 73% sometimes feel trapped by the responsibility • 67% feel guilty about placing the person in a care home

39. Guilt feelings • ‘I felt guilty at first, very guilty, leaving her there…It’s got worse as time’s gone by and it’s like I’m stuck in this downward spiral of guilt and self-blame’ • ‘I feel guiltier now than I did the day she went there…I’ve more time to think about it..’ • (10 months after admission; Woods, Keady & Seddon, 2007, p. 36)

40. Does the home contribute to relatives’ distress? • For families ‘degree of strain could be predicted from….their interaction with the nursing home’ (Almberg et al., 2000) • Not the only factor (Whitlatch et al, 2001), but a significant one – the changing relationship with person with dementia also important • Circumstances of the admission also important – crisis admissions more difficult to adjust to

41. Relatives’ views of the home • 83% generally happy with the way person is cared for (Relatives’ Association survey) • BUT • 69% feel there are insufficient activities • 26% would like to participate more in daily care • 29% feel staff don’t pay enough attention to opinions of family • 38% feel more contact is needed with staff • USA study - >25% family members want more involvement; 4.3% want less (Port et al., 2005)

42. Relationships between relatives and staff • Positive relationships – mutual respect, regular communication and consultation, concern for the relative as an individual • ‘Very amicable. We all get on well. It’s like going to see friends. They always want to know how I am getting on’ • Problematic relationships – ambiguity over roles and responsibilities, poor channels of communication • ‘When my husband first went in, I was told that I was interfering too much. We still have angry words about this.’ • ‘They do things and I’m left reeling, thinking how nice it would’ve been if they’d asked me.’ • (Woods, Keady & Seddon, 2007, p. 39)

43. Benefits of family involvement • Relatives who help with areas such as going out and taking part in activities report retaining a closer, more intimate relationship with the person with dementia (Gaugler et al., 2004) • Large study in USA reported by Zimmerman et al., 2005 (Gerontologist) • 421 residents in 45 residential care / assisted living facilities & nursing homes • Family involvement related to Quality of Life and/or well-being of the person with dementia

44. Staff perspectives • Positive perceptions: • A resource for staff as well as for person with dementia • Can show welcome appreciation • Important source of information, so care can be personalised • Negative perceptions • Disrupt routines, an added burden • Over-critical, always complaining, a source of burn-out • Some don’t visit enough • If not well, take it out on staff

45. Relationship-centred care • Maintaining and supporting relationships between person with dementia and family members • Do relatives feel welcome? • Do they feel able to continue to include the person with dementia in family activities? • Do they feel their visits have a meaning and a purpose? • Can they find support when distressed?

46. Key areas of family involvement • Monitoring the care provided • Advocacy and decision making for the person with dementia • Providing care, outside the home or within it, contributing to personalised care

47. Intervention and training programmes • Need to involve staff and families • USA – Partners in Caregiving program (Pillemer et al., 1998) – improved communication • Sweden / UK – Partners in Care (Jessica Kingsley, 2008 DVD + Booklet) – 4 sessions • Sharing information • Sharing the care • Developing supportive relationships • Making it work • Lundh et al. (2003) – improved communication, greater sense of partnership and community, greater clarity about roles and joint working

48. Not like this… • ‘I would say something about how he used to like something at home, and they would contradict me. It was as if the five years of my looking after him didn’t really count…but it was as if ‘Oh, we’re the professionals, we know what we’re doing’.

49. It’s not impossible… • ‘The owner of the home my mum was in was super. If he ever saw you looking slightly upset, straight away he was always there, arm round your shoulder, and ‘come and have a cup of tea with me and a chat’…very, very good like that. And of course you get very friendly with some of the regular staff…they were very supportive.’

50. Improving relationship quality – intervention studies (1) • REMCARE study (Woods et al., 2012) – joint reminiscence groups for people with dementia and family carers • 488 dyads took part • 12 weekly group sessions and monthly sessions for 7 months • People with dementia who attended more sessions at 10 months reported improved quality of life and improved quality of relationship (warmth) – carers reported more stress