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
1. Still living, loving and laughing-
spiritual life in the dementia unit
Dr. Chris Perkins
The Selwyn Foundation
8/21/2013 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
• 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?
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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
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4. Dementia care
“ Residents of dementia rest homes are mobile and
show confusion that requires specialist care in a
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
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5. This study
• Funded by Louisa and Patrick Emmett-Murphy Foundation and The Selwyn
• No previous studies of dementia and spirituality in New Zealand
• Qualitative study done to inform quantitative part of study
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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• 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
• Analysed: General Inductive Method (Thomas 2001)
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• The importance of relationships
• The retention of identity
• The progression of the dementia
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8. Mm staff
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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”.
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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”
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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
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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)
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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”
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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
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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
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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
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18. 2. IDENTITY
• Life events / habits
• Grooming and
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• Daughter “It was either dad’s way, or no way”
This man wouldn’t leave the lounge for an interview
• 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”.
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20. Past life lives and habits
• One man who liked work
cleaning the windows
and all that…”
• A retired salesman was
always offering to help
anyone who walked into the
• A mother tried to minimize
any inconvenience to her
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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
• A caregiver thought that appreciation of music
helped people to cope with dementia.
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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.”
• “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)
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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.”
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• 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.”
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• 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…”
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“M. And this sweetheart, what is she?
I. My assistant, B.
M. Your sister?
I. My helper
I. My sister’s a bit older than her.
M. (Laughs)- got over the hill?
My darling, I won’t keep you.”
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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”.
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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.”
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• “…singing in the church, that’s what I enjoyed. I
used to go to church. I wasn’t one of the
• “That’s what it’s all about. I’m a Catholic lady.”
• “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”.
8/21/2013 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
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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
• Humour and interest in religion remained.
Grooming could sometimes be a challenge
• People lost interest in activities or the ability to
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• 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
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• Relationships remain of prime importance
• Staff and family benefited from their
relationship with people with dementia
• Meaningful communication is possible
• People are still themselves
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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
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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
• “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
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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”
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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
• “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
8/21/2013 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
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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
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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.”
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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
…“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
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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. 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
• 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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Person-centred care (Tom Kitwood)
8/21/2013 The Selwyn Foundation
• Small number
• Units known to offer excellent care
• Need further investigation of wider range of
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• 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