Chris Perkins - Living, loving and laughing: spirituality in the dementia unit


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Chris Perkins - Living, loving and laughing: spirituality in the dementia unit

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  • Dementia is a very spiritual disease. It strips a person back to their essence.
  • Facilitating spiritual reminiscence for older people with dementia: a learning package.
  • Family –StaffOther residentsFamily and staffOther resident’s familiesVolunteers
  • The resident –family relationship was very important. People could not always recall who was who but seemed to recognize who was important to them.
  • The resident- staff relationship was hugely important with the staff getting to know the client’s needs and wants and going out of their way to support them. Individual residents had their particular preferences for individual staff members.
  • Past relationships, including with people who had died were also important. A daughter spoke about her parents.
  • Resident-resident relationships were important. Two women had had romantic relationships with men in their unit. The staff were careful to let the families know about this, though a son wondered what he was supposed to do about it.
  • Relationships were not always positive of course. One man, liked to tease people. Perhaps this was his way of being amusing. Another isolated herself on bad days but would interact when she felt brighter. Two artists were companionable but competed for staff attention.
  • One of these units had 17 beds and the other 25. These numbers meant that the places are small enough for everyone to know everyone else, resulting in an intimate feel. And for this staff member, it became a community.
  • Despite advanced dementia, people retained their own distinct identity. Caregivers and family commented that people with dementia did not stop being people.
  • There were many examples of how people, especially family members still recognised the person they knew.
  • Their past lives continued to contribute to their current character and influenced their activities and relationships.One caregiver said that she did not want to know about people’s past lives, she just accepted them as they were. Another however, had become very aware of the effect of dementia on the family ( which she wasn’t previously aware of) since her mother-in-law had been diagnosed with Alzheimer’s.
  • Both dementia units saw the value of music and provided opportunities for residents to take part. In the process of doing the interviews I sang “Clementine” and “By the Light of the Silvery Moon”. I heard a fine rendition of “I’m Just Mad about Harry.” from one of the residentsA caregiver sang “It’s a Long Way to Tiperary” to dance one of the participants to a quiet place for the interview,
  • One man insisted on sitting outside to talk to me- it was a nice day. One resident became animated when her family member brought in a dog, she reminisced about her previous 5 dogs, recalling some of their names. Most were said to enjoy animals that were brought into the facilities
  • Not everyone wanted to get involved in everything that was going on in the unit. A way of expressing own taste and individuality
  • The first quote is a good example of how the 3-way questioning was able to confirm what was said
  • Most people had a sense of humour. This was evident from reports of family and staff as well as the person’s interaction with the interviewer. The staff enjoyed recounting the amusing happenings on their unit and could be seen laughing with residents. This seemed to be an important element in their enjoyment of their job. Sometimes a resident’s sense of humour was not shared by others e.g. when one resident deliberately stood in front of the TV despite others yelling at him to move away.
  • People very definitely had their own styles still. Another staff member commented that a resident would get agitated if her cardigan sleeves weren’t pulled down.
  • For several people, their religion was an important part of them. Both places had weekly visits from clergy to take communion. One woman refused communion from Catholic lay visitors but was happy to receive it from the Anglican minister. A daughter was sorry her father had no faith: she thought it would have helped him. However he was born in Northern Ireland and “It caused conflict for Dad. His mother was a Catholic, raised pre-depression. … and his father was a Protestant .
  • In the interest of time I am not going to go into this in much detail.Manypeople commented on the skills the resident had lost. They commonly noted deterioration in speech but also reduced alertness and response, less involvement in activity, behavioural and physical changes.
  • Discussion:The importance and warmth of relationships persists even if people have dementia severe enough to require secure dementia care. The people interviewed appeared to have trusting relationships with the staff and to be happy in their care; they actually seemed to be having fun together. Family members, staff and the interviewer really enjoyed their contact with the person with dementia, though this was tinged with sadness. This challenges (in a small way) the discourse about “the burden” of dementia care- in that people with dementia can still contribute by interacting joyfully with others. Humour persisted and provided “a connecting point for intimacy”. (MacKinlay 2004)Family and staff and sometimes the interviewer could communicate meaningfully with these people despite severe dementia (e.g. Sabat S, Goldsmith, M). There could be no doubt that people’s identity was maintained- each person was very different from the others and retained characteristics from their former lives. As Christine Bryden said once, it is silly to imagine that people with dementia stop being people. In these few people art, religion and to a lesser extent nature seemed important, however, the interconnecting web of relationships seemed overwhelmingly to be most meaningful. Dementia is a progressive condition and all the interviewees- residents, caregivers and family have to adjust to this.There are obviously limitations to this study with small numbers of people from two rest homes selected for their good reputations in dementia care- and with family members who chose to participate. Talking to family and staff, before interviewing the person with dementia may have caused bias, but was necessary to gain consent and reduce anxiety as well as helping to direct the interview towards relevant topics. It is also possible I may have misinterpreted some responses. Having a video tape would have been better to get some independent opinion on some of the reactions.Future researchThe issues of identity and relationship were covered by the survey planned, though the reciprocity of the relationships with staff was not and a question regarding this was added.
  • Loss of communication could be difficult for the family who also had a reduced number of ways to interact with people.
  • Family members were accepting, but they were often sad or upset
  • Behaviour changes affected relationships. A man became more obviously angry and aggressive”One resident no longer always recognised her male friend and would try to walk with other peopleCommunication difficulties affected relationships in the unit.
  • One resident was clearly frustrated by her word-finding difficulties during the interview. Relatives and caregivers reported that several residents were aware of the changes happening to them.
  • One resident died a month after I interviewed her and another after I had gained permission from the family, but not spoken to him. One man had liked to “potter around the rest home”, but is now wheel-chair bound.One woman was puzzled (during the interview) by how to eat shortbread, despite her son demonstrating this. Another appeared frail and coughed while drinking her tea, suggesting swallowing problems. A woman had been losing weight but this was stabilized with dietary supplements. Failing eyesight and hearing, though not dementia-related also contributed to difficulties in keeping people involved.
  • The personality of one resident seemed to improve as the dementia advanced>
  • An artist who worked with pastels now smudged them and recognised that the product was not as good as she would want. She spent time and enjoyed looking at art books. People had continued to retain their sense of humour and interest in religion.
  • Grooming and maintenance of appearance became more difficult as the condition advanced. It was difficult to get one woman’s hair done. One man kept losing his dentures
  • Chris Perkins - Living, loving and laughing: spirituality in the dementia unit

    1. 1. Still living, loving and laughing- spiritual life in the dementia unit Dr. Chris Perkins The Selwyn Foundation New Zealand 8/21/2013 1The Selwyn Foundation
    2. 2. • Spirituality is no different in dementia: only the brain changes. Intrinsic value of person is never lost • Spirituality is about what gives life meaning and purpose • Spirituality in older people may be mediated through nature, the arts, religion and relationships • There may be difficulty expressing and meeting spiritual needs, fear of separation from God • Long-term memory of spiritual / religious practice of youth may become more prominent Dementia: effect on spirituality? 8/21/2013 2The Selwyn Foundation
    3. 3. NZ Scene • Increasing number of people with dementia- 46,000 in 2008, by 2026, 74,000. • Currently 201 dementia specific units: usually 20 residents / unit. • Spiritual care is an element of holistic care and its importance is recognised in various policy documents pertaining to aged care. • Mandatory and audited in contracts between hospital boards and providers if residents are publicly subsidised. 8/21/2013 3The Selwyn Foundation
    4. 4. Dementia care “ Residents of dementia rest homes are mobile and show confusion that requires specialist care in a secure environment.” All must be assessed for this level of residential care: Generally GDS stages 6-7 moderately to very severe dementia (1983 by Barry Reisberg) Specialist or psychogeriatric hospitals: “The residents have high dependency needs coupled with challenging or noisy behaviours.” 8/21/2013 4The Selwyn Foundation
    5. 5. This study • Funded by Louisa and Patrick Emmett-Murphy Foundation and The Selwyn Foundation. • No previous studies of dementia and spirituality in New Zealand • Qualitative study done to inform quantitative part of study The question: What is meaningful to people with dementia severe enough to require specialist care? Approved Southern Ethics Committee Sep. 2012 Ethics ref. 12 STH 12 Carried out Nov. 2012- Jan. 2013 8/21/2013 5The Selwyn Foundation
    6. 6. Methods • The participants: 6 people with moderately severe dementia, 5 family members, 7 staff from 2 rest homes (1 with religious affiliation, 1 private)  3-way view • Semi-structured questionnaire developed from MacKinlay & Trevitt (2006) • Interviews were audio-taped and I typed transcripts • Analysed: General Inductive Method (Thomas 2001) 8/21/2013 6The Selwyn Foundation
    7. 7. Themes • The importance of relationships • The retention of identity • The progression of the dementia 8/21/2013 7The Selwyn Foundation
    8. 8. Mm staff Others Volunteers, visitors Res past relationships Other residents Clinical and non-clinical staff Resident Family members 1.RELATIONSHIPS COMPLEX WEB! GOD 8/21/2013 8The Selwyn Foundation
    9. 9. Residents and family “ … her and I always got on really well and she seems to be comfortable in my company, like she’s pleased to come away with me, but she wouldn’t know who I am… so I think I’m probably like some kind of pleasant stranger who comes every now and again.” Son speaking about his mother At the end of my interview with them, mother held son’s hand , looked closely at him and said “ You’re lovely”. 8/21/2013 9The Selwyn Foundation
    10. 10. And family reciprocate “ She was always a very sweet and loving person, and , uh, yeah, she’s still that person.” “ I love my Dad. I respect him and do my best to honour him. I no longer have to pretend” “I was very lucky to have the parents I had… very, very good” 8/21/2013 10The Selwyn Foundation
    11. 11. Residents and staff- “. ..did quite a lovely thing, she said ‘M.,’ she said, ‘we’re the same, me too, and she stripped off and went in the shower with her, and I just thought that was … from then on she just broke the (ice). She’s the only one that can work with Mum.” Daughter speaking about caregiver who encouraged her mother to shower 8/21/2013 11The Selwyn Foundation
    12. 12. And staff reciprocate “It means a lot to see them happy and give them joy or pleasure or comfort really.” Caregiver speaking about the residents 8/21/2013 12The Selwyn Foundation
    13. 13. Photos are important • A. pointed at and looked intently at a photo of himself with his wife. • He appeared to recognize her, since he looked at the photos of them as a couple, when we mentioned his wife’s name. (Notes) 8/21/2013 13The Selwyn Foundation
    14. 14. Past relationships Daughter speaking about her parents’ marriage: “They were very good for each other, wonderful, wonderful. They had their arguments but they were inseparable. Very, very lovely… life has been family, connections.” Her mother did not recall her husband had died: “She even doesn’t know that he’s not here any more….every day she thinks he is here and he is happy and she is happy as well” 8/21/2013 14The Selwyn Foundation
    15. 15. Resident/resident relationships “… Pete. had a wife and they always used to include her (Ivy) -“a threesome”- in the family. In the concerts, Ivy was always in the photos… They were very good to her, used to take her out. Went to Mission Bay. Went to the movies a couple of times and took Ivy as well. Which was quite generous of the wife, really.” Manager about a romantic relationship 8/21/2013 15The Selwyn Foundation
    16. 16. Resident /resident “… She made very, very close friends with B. because they were, like the same, maybe it was the land, like blood and they became immediate friends and she would not leave without B. Anywhere she goes, she just hold her hand and go, just sit, even… nobody could sit on that chair next to M. when B. has gone to the bathroom or somewhere. She’d save the chair… She’ll say “this is for my friend, she is coming.” Then they would sit together and go outside and do everything together.” Caregiver - about a friendship 8/21/2013 16The Selwyn Foundation
    17. 17. A community “ (It is) sometimes nice to sit in the lounge with them -a community - they have relationships and have chit chat and friendships and the comfort of being in a small group where people are familiar and the routines are familiar and on the medical side, we’re looking after them.” Caregiver 8/21/2013 17The Selwyn Foundation
    18. 18. 2. IDENTITY • Personality • Life events / habits • Interests • Surroundings • Ethnicity • Humour • Grooming and appearance • Religion 8/21/2013 18The Selwyn Foundation
    19. 19. Personality • Daughter “It was either dad’s way, or no way” This man wouldn’t leave the lounge for an interview with me. • A woman wouldn’t speak to me. Her son said she came from a family where “being stubborn and difficult” was seen as a positive characteristic. “Ha,” he said.“This is just so Mum”. 8/21/2013 19The Selwyn Foundation
    20. 20. Past life lives and habits • One man who liked work “potters around, cleaning the windows and all that…” (Daughter). • A retired salesman was always offering to help anyone who walked into the home • A mother tried to minimize any inconvenience to her children. 8/21/2013 20The Selwyn Foundation
    21. 21. Interests- music and art • “She does enjoy music and she’s got a beautiful voice, and on a good day, we often play a lot of music, she will sing.” • One resident had been a very good artist and the staff sometimes took her out to art exhibitions. • A caregiver thought that appreciation of music helped people to cope with dementia. 8/21/2013 21The Selwyn Foundation
    22. 22. Nature and the outdoors • “Anyway, we’re up to the good days… very much of (sighs) what’s the word? It’ll be good days.” (Resident) • “For her spiritual needs…she goes into the gardens, she enjoys the flowers, she really loves the flowers and the gardens. …(she) picks flowers, nice flowers. Her daughter brings flowers every time she comes, weekly, makes sure the flowers are there.” (Caregiver) 8/21/2013 22The Selwyn Foundation
    23. 23. Other interests • “That’s why I like her being here, because ...they do tai chi, they do cooking, they do sewing and all those things to occupy Mum’s time. Sometimes she participates and sometimes doesn’t want to, so sometimes she likes just watching it. It all depends. And sometimes she feels like it’s patronizing her and she doesn’t want to get up and do it. But she will watch and she will encourage others to do it.” 8/21/2013 23The Selwyn Foundation
    24. 24. Surroundings • Staff member: “Her own room, that’s her little space, her happy space, more comfortable in her area.” • Daughter: “She loves her room. And if you do see her, go to her room with her. She’s got her mural, we’ve got collages of all the family… ‘cos, she likes her bits and pieces, whatever the grandchildren made, or we made, or whatever we drew. She’s got everything.” 8/21/2013 24The Selwyn Foundation
    25. 25. Ethnicity • Daughter: She is very proud of where she’s from (Croatia) and who she is…” • Resident: “I’m very grateful that I’m a Dalmatian” • Caregiver: “she’s so proud of her country, the people and her husband” (also Croatian). --------- • “He has a lovely nature, the Irish in him” • “He never considered himself anything else but Scottish, yet he is not of Scottish origins…” 8/21/2013 25The Selwyn Foundation
    26. 26. Humour “M. And this sweetheart, what is she? I. My assistant, B. M. Your sister? I. My helper M. Laughs I. My sister’s a bit older than her. M. (Laughs)- got over the hill? My darling, I won’t keep you.” 8/21/2013 26The Selwyn Foundation
    27. 27. Humour is universal… • Interviewer: Do individuals have different ways of showing spirituality? • Caregiver: “Yes, but…friendship and humour… the lighter things, they all appreciate these”. 8/21/2013 27The Selwyn Foundation
    28. 28. Appearance and grooming • “She’s very flamboyant. She likes wearing nail polish, red if possible or bright orange nail polish. So we try to do that. She likes her hair as it is, kind of long. We usually call it blonde, as it is, she’s a blonde and she enjoys that. She responds to that sort of praise quite well.” 8/21/2013 28The Selwyn Foundation
    29. 29. Religion • “…singing in the church, that’s what I enjoyed. I used to go to church. I wasn’t one of the waggers” (Resident) • “That’s what it’s all about. I’m a Catholic lady.” (Resident) • “She would only go down when the Catholic priest came for a while. We had lay people from the Catholic Church and she’d never go down. It was only when the priest was there with all his robes…The Anglican priest wears all the robes”. (Staff) 8/21/2013 29The Selwyn Foundation
    30. 30. 3. PROGRESSION OF DEMENTIA • “Yes, she sometimes can’t put things together, um, straight away…. I find things are going a bit downhill each time I come.” Daughter • “She’s kind of deteriorated, a little, and is much more sleepy than she used to be” Staff member 8/21/2013 30The Selwyn Foundation
    31. 31. What changed? • Relationships with family, staff and other residents became more difficult • Physical deterioration relating to other conditions as well as the dementia • Personality seemed to change only in one case- it got better! • Humour and interest in religion remained. Grooming could sometimes be a challenge • People lost interest in activities or the ability to be involved 8/21/2013 The Selwyn Foundation 31
    32. 32. Reactions… • Some people with dementia were aware of the changes “Even yesterday I saw him … with him all the time. He had tears in his eyes. He said ‘I’m sorry, I’m sorry”. Wife • Family members were sad, but accepting Son: “Yes. That’s the way it is. That’s the pattern. That’s the journey we’re on.” • Staff worked hard at continuing communication 8/21/2013 The Selwyn Foundation 32
    33. 33. Discussion • Relationships remain of prime importance • Staff and family benefited from their relationship with people with dementia • Meaningful communication is possible • People are still themselves 8/21/2013 33The Selwyn Foundation
    34. 34. Limitations of study • Small numbers • At the best places- what goes on elsewhere? (But quantitative arm seems to bear out commitment to spirituality) • Also what happens in larger units i.e. not specifically catering for people with dementia QUESTIONS AND COMMENTS 8/21/2013 The Selwyn Foundation 34
    35. 35. Thanks 8/21/2013 The Selwyn Foundation 35
    36. 36. Relationships with family • “You don’t know what actually goes on in her head. You don’t know who she’s seeing, what she’s thinking…. There might be nothing going on there or she might be thinking about doing things…” Son • “These days he never asks about our home or house. He used to” Wife (sadly) • “In the beginning she used to say “how did I get here?” but she doesn’t now.” Daughter 8/21/2013 36The Selwyn Foundation
    37. 37. Family reaction • Son: “Yes. That’s the way it is. That’s the pattern. That’s the journey we’re on.” • Wife:“It’s awful, very, very, sad…. (tears)… When I’m busy I’m OK but when I’m on my own, sitting, well… if I start thinking about him then I think, Oh my god I hope he’s alright…” • “But, it’s just sad watching him wither away” (Daughter.) 8/21/2013 37The Selwyn Foundation
    38. 38. Relationships with other residents • “He’ll belittle people publicly He never used to do that so blatantly. He swears a lot now, much more physically aggressive, publicly, than he would ever, ever allow people to see.” Daughter. • “She’ll grab anybody that’s walking around the corridor... they don’t want to, then it turns into aggression, which is sad.” Caregiver • “Ummm, at the weekend they get lonely. It could be to do with the dementia, not being able to connect and understand. Not being able to make sense of where they’ve been.” Caregiver 8/21/2013 38The Selwyn Foundation
    39. 39. Relationships with staff Caregiver: “We try, we still try and talk to her…” In the past you would get an answer from Z. about 90% of the time, but now it was only 20%. Two staff members talking about a resident: Q. “He’ll stop you in the corridor and talk. Sometimes his speech is… S. “Yes, word-finding difficulty now…” 8/21/2013 The Selwyn Foundation 39
    40. 40. Resident’s reaction to progression “Even yesterday I saw him at (rest home), with him all the time. He had tears in his eyes. He said ‘I’m sorry, I’m sorry”. And I started crying, I just talk about it and I cry.” Wife “I sometimes get the feeling that she sort of knows…if you’ve got the anxiety of not knowing whether to pick up a sandwich and eat it, then you’ve got anxiety that you don’t quite know what’s going on… you know, her life is somewhat out of her control, things just happen to her.” Son “…you can see how hard it is for the person. A lot of them are really aware of deterioration. It’s only the blessed few that are unaware, but the others are frustrated or can’t find the word, or the confusion upsets them. (It’s) quite hard when you see this and think of their existence when things aren’t right.” Caregiver 8/21/2013 40The Selwyn Foundation
    41. 41. Physical changes • Caregiver “she can’t hear so well now, she’s lost sight, in one eye, I think. She used to wear glasses but doesn’t do that now. We did scrapbooking last year. She cut up the pages and that but she’s lost the ability now. She’s had ‘turns’ this year which have diminished her abilities to do that which is a bit sad.” 8/21/2013 41The Selwyn Foundation
    42. 42. Identity / personality “He’s a nicer person now because he’s not so prejudiced so he no longer looks through those glasses of how does this affect me? Is it going to reflect on me and is it a good or bad reflection?” …“I actually really like who he is at the moment, as a personality, because a lot of the judgements and the racism, all the prejudices he had have gone.” Daughter 8/21/2013 42The Selwyn Foundation
    43. 43. Changes in interests • “He comes every Friday …to the choir and he loves the singing. He doesn’t sing any more, but he’s so happy looking at and listening to them. He’s part of the choir, they sing and he just loves it…. he taps his feet , smiles and laughs” • Caregiver now speaking to A. “That’s you, isn’t it? You used to enjoy the singing too, but now you just listen. Very happy to listen.” 8/21/2013 43The Selwyn Foundation
    44. 44. Grooming and appearance • “It’s getting worse to get her to start having it done. Once she starts to get pampered, then she’s fine.” … “Coming back, she likes everyone says to her that her hair looks nice”(daughter talking about trip to hairdresser). • Daughter: “… his shirt, his socks, his shoes were shiny, not a bit of dirt, he was always a well-presented man.” But now “he looks like the sloppiest person I’ve ever met. He’d be hideously embarrassed of himself, how he looked now. I hate looking at the way he’s become. He’s not who my father would like to be.” 8/21/2013 44The Selwyn Foundation
    45. 45. 45 Person-centred care (Tom Kitwood) 8/21/2013 The Selwyn Foundation
    46. 46. Limitations • Small number • Units known to offer excellent care • Need further investigation of wider range of care providers 8/21/2013 46The Selwyn Foundation
    47. 47. 47 • Personhood is “a standing or status bestowed on one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust.” (Kitwood 1997) 8/21/2013 The Selwyn Foundation