Chris Perkins - Still living, loving and laughing- spiritual life in the dementia unit

1. Still living, loving and laughing-
spiritual life in the dementia unit
Dr. Chris Perkins
The Selwyn Foundation
New Zealand
8/22/2013 1The Selwyn Foundation

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?
8/22/2013 2The Selwyn Foundation

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.
8/22/2013 3The Selwyn Foundation

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.”
8/22/2013 4The Selwyn Foundation

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
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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)
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7. Themes
• The importance of relationships
• The retention of identity
• The progression of the dementia
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8. Mm staff
Others
Volunteers,
visitors
Res
past
relationships
Other residents
Clinical and
non-clinical
staff
Resident
Family
members
1.RELATIONSHIPS
COMPLEX WEB!
GOD
8/22/2013 8The Selwyn Foundation

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”.
8/22/2013 9The Selwyn Foundation

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”
8/22/2013 10The Selwyn Foundation

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
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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
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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)
8/22/2013 13The Selwyn Foundation

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”
8/22/2013 14The Selwyn Foundation

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
8/22/2013 15The Selwyn Foundation

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
8/22/2013 16The Selwyn Foundation

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
8/22/2013 17The Selwyn Foundation

18. 2. IDENTITY
• Personality
• Life events / habits
• Interests
• Surroundings
• Ethnicity
• Humour
• Grooming and
appearance
• Religion
8/22/2013 18The Selwyn Foundation

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”.
8/22/2013 19The Selwyn Foundation

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.
8/22/2013 20The Selwyn Foundation

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.
8/22/2013 21The Selwyn Foundation

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)
8/22/2013 22The Selwyn Foundation

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.”
8/22/2013 23The Selwyn Foundation

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.”
8/22/2013 24The Selwyn Foundation

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…”
8/22/2013 25The Selwyn Foundation

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.”
8/22/2013 26The Selwyn Foundation

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”.
8/22/2013 27The Selwyn Foundation

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.”
8/22/2013 28The Selwyn Foundation

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)
8/22/2013 29The Selwyn Foundation

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
8/22/2013 30The Selwyn Foundation

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
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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
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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
8/22/2013 33The Selwyn Foundation

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
8/22/2013 The Selwyn Foundation 34

35. Thanks
8/22/2013 The Selwyn Foundation 35

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
8/22/2013 36The Selwyn Foundation

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.)
8/22/2013 37The Selwyn Foundation

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
8/22/2013 38The Selwyn Foundation

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…”
8/22/2013 The Selwyn Foundation 39

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
8/22/2013 40The Selwyn Foundation

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.”
8/22/2013 41The Selwyn Foundation

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
8/22/2013 42The Selwyn Foundation

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.”
8/22/2013 43The Selwyn Foundation

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.”
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45. 45
Person-centred care (Tom Kitwood)
8/22/2013 The Selwyn Foundation

46. Limitations
• Small number
• Units known to offer excellent care
• Need further investigation of wider range of
care providers
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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)
8/22/2013 The Selwyn Foundation