Chris Perkins - PowerPoint Presentation

Slide1

Chris Perkins

November 4th 2016Alzheimer’s NZ ConferenceWellington

Being

the Being normal in the dementia unit

Chris Perkins

Alzheimer’s NZ Conference

04/11/2016Slide2
Slide3
Slide4
Slide5

“people with dementia have to be understood in terms of relationships, not because that is all that is left to them, but this is characteristic of all our lives.”

Hughes,

Louw

&Sabat 2006 p.17Slide6

What do we know about relationships between people with dementia in care?Slide7

Research

Interviewed 6 people with dementia living in 2 dementia units, 7 staff, 5 family members.

Dementia units are for people dementia and behaviours that challenge . “Residents of dementia units are mobile and show confusion that requires specialist care in a secure environment”

There are usually about 20 people per dementia unit (17 and 26)Global Dementia Scale 6-7 (Reisberg 1983): Moderately severe.Slide8

Themes:

Importance of relationships

Retained identityEach person kept their own personality; they were described as “loving”, “stubborn”, “social”, “artistic” etc. and their personality naturally influenced their interactions

with others i.e. their relationshipsProgression of dementiaAs dementia progressed it was harder to keep up relationships.

Perkins

, C., Egan, R., Llewellyn, R., & Peterken, B. (2015). Slide9

Mm

staff

Volunteers, visitors

(to other people)

Res

past relationships

Other

residents

Clinical and non-clinical staff

Resident

Family members

Relationships:

A COMPLEX WEB!Slide10

Relationship themes

friendship, negative interactionsisolation,romance, communitySlide11

Friendship

“… there was a lady came here, another Croatian lady came to stay. 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 N. 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 of N.Slide12

Two artists

Interviewer: “I wonder what they talk about?”

Staff 1: “Probably themselves” (laughs)Staff 2: “

And I’ve heard J. talking about … her “boyfriend” too, to A., the love of her life kind of thing. A. is trying to find words to reply.”Slide13

Helping

Caregiver: “She also loves … morning tea and afternoon tea. When they come there we make the pot of tea for them and one of them will dish out the tea for everybody... Then you see she asks “have you got enough to eat? Have you got the tea?”Daughter:

“she’ll see somebody in trouble, say they stood up and have fallen down and can’t get up, she’ll see if she can help. She gets very worried about someone in trouble.”Slide14

Antagonism

““He can offend people quite easily. I was showing this woman around and he came out the door and said “God, you look old”, as he moved on. He’s like that. I don’t know that he means to be offensive; he just says what’s on his mind.”

ManagerHe likes an audience. He’s not really interacting with you, he’s telling you what to do…. In the dining room he is telling people what they should be doing and which table they should be sitting at and things like that. So there’s a bit of reaction from some residents who don’t want to be told”.

Manager: Slide15

Irritation

“one resident here, is … repeating herself…can’t express herself, says “la, la, la” and.. if L’s enjoying the music … she will turn around and say straight out “Oh, shut up”. That annoys L. because she is enjoying something and someone is distracting, that’s why she gets like that.” (Caregiver)

“Once, he stood in front of the TV screen and wouldn’t move. Everyone was shouting at him. He does things like that, to annoy people sometimes.”Staff 1.

“ I think he’s just teasing”Staff 2.“Yeah, it’s probably humour gone wrong.”Slide16

Staff intervention

One caregiver supports a lady by “keeping her away from the other residents, you know, she might annoy them by walking around and trying… (to take them with her).”“

There are people that annoy the hell out of each other. Like N. There’s one guy who hones in on her because his wife was little… you have to kind of defuse the situation sometimes.” Caregiver: Slide17

Jealousy / Envy

“And we have A. often sits with J. together and you have to be really careful because if one person gives one of them more attention than the other, they really hurt. So you have to speak to J. and then speak to A. while holding J.’s hand… they both want attention.” Caregiver about the two artists

Elsewhere, residents were upset by the closeness of a couple whose relationship developed in the dementia unit. They spent a lot of time walking hand in hand. “Some of them are annoyed by B and K… the company, watching someone walking around the room. It might stir emotions up in them.”

Caregiver: Slide18

Isolation

…” She likes her own company. I told her to talk to other people but sometimes she doesn’t feel like it. I more or less don’t force her. She’ll do it if she wants to do it. Her mind’s always active.” Relative speaking about person’s reluctance to leave her room

“He didn’t have many friends, did Dad.”

Daughter“ She doesn’t talk to other people. ‘Oh, no, they’re all mad’. “All these people here have got dementia, Alzheimer’s disease and I haven’t.” Daughter-in-lawSlide19

Romance

“And you know, if he gets up in the morning and she’s not up, when she comes into the room, his eyes light up.

CaregiverSlide20

Romance

Caregivers discussed the relationship between two residents. The lady was not very verbal, though the man was able to have conversations, which he did with other people. However they didn’t talk much between themselves. They walked around together and there were

“ physical interactions, holding hands or sitting touching, resting an arm on each other, there’s that kind of connection, but it’s not really…the normal… errrrr…meeting of minds.”

“We just looked on it as companionship. None of us (family) and none of the staff including any of us here could be that close to her, and if she’s found another resident that can give her pretty much fulltime attention, that’s good.” Son when told about relationshipSlide21

more

“ When she first came , she was in love with C. He was very tall, didn’t speak, but that didn’t matter with him. He died and … she still remembers what hymn they played at his funeral, because we sing it in the choir and she says “they played that at C.’s funeral.””

“ Her favourite occupation at the moment is holding T’s (male friend) hand, and that’s OK. We just make sure there isn’t any inappropriate stuff going on, and there isn’t.”

CaregiversSlide22

Sexuality

“ It is simply natural for men and women living in close proximity at all times to form relationships within their co-ed home.”

“ The insecurity and loneliness of a dementing illness make the interpersonal relationship the most important aspect of care.”Kuhn, D. (2002) Slide23
Slide24

Community

“They watch each other, and they form opinions about their behaviour and… there are judgements going on.”

“There are still normal things that play out. Someone might be short-tempered, someone might be tidying up, and want company, want to share a magazine; all those interactions still happen.”

Staff members[It is] “sometimes nice to sit in the lounge with them, a community, they have relationships and 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.”

CaregiverSlide25

“ Perry pictured them in their different chairs: Melvyn Broome and Peter Pascoe with their walking sticks. Sideways Geoffrey who often had to watch television at an angle. Eleanor shooting out her claw to grab passers-by. Doris whispering to Jennifer-the-Cloth-Doll. Karl fretting about fabric samples. Dorothy swaying at the piano, pretend-playing on the closed lid because the

tv

was on. Perry wished she were there.”Slide26
Slide27

Significance?

They are just like us!Coping with living with 19 strangers 24/7?For yearsWith no way to get outIt is quite an ask for anyone!Slide28

Significance

We are asking people with severe dementia to adapt to communal living with a whole bunch of other people with severe dementia.People have different personalities and cope differently with social interactions

. (Just like us)Much of the behaviour we considering stopping are normal responses to an abnormal situation.

People in secure units do amazingly well!Slide29

Significance

Staff can facilitate positive interactions and help avoid negative ones.We need to design dementia units to allow people to spend time together in privacy, if that’s what they want.

We need spaces for people to get away from their co-residents for time on their own, if that’s what they want.Can we encourage a feeling of community?Do we need to think of better models

for dementia care?Slide30

“people with dementia have to be understood in terms of relationships, not because that is all that is left to them, but this is characteristic of all our lives.”

Hughes,

Louw

&Sabat 2006 p.17Slide31

Questions and commentsSlide32

References

De Goldi K, ( 2012) The ACB with Honora Lee, Auckland, Random HouseGoldsmith M ( 1996)

Hearing the voice of people with dementia London, Jessica Kingsley Publishers LtdHughes, Louw &

Sabat (2006) Seeing Whole in Dementia: mind, meaning and the person OUP, Oxford ,p.17Kuhn, D. (2002) Intimacy, sexuality and residents with dementia Alzheimer’s Care Quarterly 3 (2) 165-176

Mackinlay

E &

Trevitt

C. (2012)

Finding meaning in the Experience of Dementia: The Place of Spiritual reminiscence work

London JKP

Perkins, C., Egan, R., Llewellyn, R., & Peterken, B. (2015). Still living, loving, and laughing: Spiritual life in the dementia unit.

Journal of Religion, Spirituality & Aging

,

27

(4), 270-287.

doi

:

10.1080/15528030.2015.1037532

Snyder, L (2006) Personhood and interpersonal communication in dementia in

Dementia: Mind, meaning and the person

Oxford, OUP p259-286

Stokes, G. (2010)

And still the music plays

Hawkestone

Books London

The Last Taboo

, www.ilcuk.org.ukVerity, J.

The Spark of Life Approach Dementia care Australia