Introduction
Methods
Study Design
Sampling and Recruitment
Characteristic | Participating people with dementia (n=25) | Participating family members (n=32) | Non-participating people with dementia (n=11) |
---|---|---|---|
Interview types | |||
Individual Interviews | 4 | 11(a) | |
Dyadic (spouse) | 15 | 15 | - |
Dyadic (parent–child) | 6 | 6 | - |
Age | |||
45 or younger | - | 1 | - |
46-64 | 2 | 10 | - |
65-79 | 14 | 17 | 3 |
80 or older | 10 | 4 | 4 |
Gender | |||
Male | 9 | 13 | 7 |
Female | 16 | 19 | 4 |
Place of birth | |||
Australia | 19 | 21 | 3 |
Western Europe | 4 | 4 | 1 |
Mediterranean Europe | - | 5 | 6 |
South East Asia | - | 1 | - |
South America | - | 1 | 1 |
Africa | 1 | - | - |
Location | |||
Metropolitan | 15 | 20 | 5 |
Regional | 10 | 12 | 2 |
Rural/Remote | - | - | - |
Living arrangement | |||
Home | 19 | - | 5 |
Residential care facility | 6 | - | 2 |
Type of dementia | |||
Alzheimer’s | 14 | - | 3 |
Vascular | 1 | - | 2 |
Lewy body | 1 | - | 1 |
Fronto-temporal | 1 | - | 1 |
Mixed/other(b) | 4 | - | 1 |
Unknown | 4 | - | 3 |
Years since diagnosis | |||
Median (IQR) | 5 (3–8) | - | 4 (2.5–7) |
Symptom severity (carer rated DSRS score) | |||
Average (range) | 19.4 (6–36) | - | 24.7 (12–32) |
Data Collection
Data Analysis
Results
Experiences and Values in Decision-Making
The Person in Relationship Over Time
… what we are faced with here is a problem that you and I have and you and I have to deal with it. So, it’s not the individual. It’s at least the individual and their carer. To take it further, it’s the family, the friends, the associates … all those people are somehow affected. (Tony, sixty-seven-year-old man living with dementia, interviewed alone)
I’ve always been very confident and sure of myself but I’m not anymore … it’s just not there anymore. Probably because of other peoples’ reactions … (Josie, seventy-five-year-old woman living with dementia, interviewed with husband)
He’s just immaculate and everything has to be immaculate and Mum used to be immaculate and she’s not anymore. He can’t reconcile that. He thinks that the best way to deal with it is to keep it indoors, keep her inside. (Yulie, fifty-seven-year-old woman, daughter, interviewed alone)
… because they’re not at work anymore to ask their workmates, and they’re not out with their mates anymore, which is the normal situations that you would sound off with other people. He really is stuck with me aren’t you? (Vivian, fifty-nine-year-old woman, wife, interviewed with husband).
I sometimes think is it going to get worse? That’s the problem. Someone should be showering me or in there with me but is it going to be worse than it is now? I don’t know. No one can answer that one. (Barry, seventy-five-year-old man living with dementia, interviewed with wife)
… becoming the parent of your parents is one of the hardest things that you have to do in your life. (Marika, seventy-seven-year-old (bereaved) daughter, interviewed alone)
Maintaining Involvement
…there are occasions where [wife] makes decisions on my behalf but a fair percentage of those decisions she pays me the courtesy of what they are and why. I think that’s important … from the esteem side of things. (Tony, sixty-seven-year-old man living with dementia, interviewed alone)
I’ve lost so much. I’ve lost my confidence, my decision-making [has] gone through the roof … I was always on top of things. I’m not anymore and … my own health I feel I can still, especially something simple like a cough. (Josie, seventy-five-year-old woman living with dementia, interviewed with husband).
It’s my life. I don’t mind if the decision doesn’t go my way, none of that matters. It’s to be acknowledged and recognized that you’re still a person and you’ve still got the ability to reflect what it is that I want, that I would like, and I’m quite happy to listen if there is to be another judgement I might shout a bit more, but… [aside to husband] we don’t have a problem, do we? (Sarah, seventy-one-year-old woman living with dementia, interviewed with husband).
Right up until the last minute, they’re humans, they deserve to be respected the same way, they have rights … (Maisie, fifty-five-year-old (bereaved) daughter, interviewed alone)
… sometimes that’s quite complicated because if you’re a disability advocate as I have been for most of my working life the last thing you want to do is substitute decision-making and yet there are cases where I’ve come really close to that and I warned her of that. (Liesel, sixty-five-year-old woman, partner, interviewed alone)
It comes back to identifying where that point in time is, where you become incapable of making decisions on your own … or even with assistance. (Tony, sixty-seven-year-old man living with dementia, interviewed alone)
… if the disease damages my brain and I start to talk differently, that my guardians will implement what the real me, the undamaged me wants in place … (Vera, sixty-five-year-old woman living with dementia, interviewed alone)
As I say I’m pretty well off the hook for a lot of things, because my memory is mainly [pause] I discuss a lot of it with [daughter] and I rely on her for a lot of things… She took a lot of responsibility off my shoulders when she looks after things because I used to get worried because I was confused what I thought I might be doing wrong and she knew what I was trying to do. (Nerium, eighty-seven-year-old woman living with dementia, interviewed with daughter)
I think that [supported decision-making] will depend on the stage to be honest. That would be totally impossible now because there’s just not the cognition. It wouldn’t matter. I think definitely earlier on and after the doctors have deemed [husband] not competent, I still think there was probably another twelve months where we could have done that. (Vivian, fifty-nine-year-old woman, wife, interviewed with husband)
… [making a substitute decision] didn’t worry me at all, because my main thing is he’s got to be feeling happy and contented and particularly safe, because he’s a very vulnerable man, although he wouldn’t like anyone to know that. (Barbara, eighty-five-year-old woman, mother, interviewed alone)
Views on Supported Decision-Making
Facilitating Decision-Making
… [my] partner’s very good at knowing what my preferences are to start with and for example going out to dinner … She made the decision to narrow it down to two or three venues that I would function with. Offered a narrow choice which fitted in with what I would have gone with anyway. But it saved the problems of having to dismiss other options … (David, sixty-three-year-old man living with dementia, interviewed alone)
The most important thing that … [friend] did was recognizing at that stage there was [sic] periods of lucidity and … to use that, not just once but three or four times to confirm and confirm and confirm. (Vivian, fifty-nine-year-old woman, wife, interviewed with husband)
… you feel as though you’re being bombarded. If somebody’s trying to tell you something like [husband]’s been trying to tell me something sometimes and he says, “But I mean this, this is what I’m meaning,” and not catching on and then I lose it because it’s just not working. (Josie, seventy-seven-year-old woman living with dementia, interviewed alone)
Cognitive Impairment | Strategies | Exemplars |
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Difficulty retaining information | • Repeating information • Alternative approaches to access memories | “I may have to have that conversation with mum many times, and that can be challenging, but when I’m in the moment with her she understands it.” (Gloria, fifty-eight-year-old woman, daughter) “So if you describe a picture then [partner] remembers things … but the way she learns and perceives the world is very different from many people …” (Liesel, sixty-five-year-old woman, partner) |
Difficulty understanding or weighing up multiple options | • Translating jargon • Simplifying concepts • Presenting a reduced number of options • One topic at a time | “When we got to [completing advance care] directives, the lawyer was a bit concerned that he may not understand … but when I said, look [lawyer] is talking about when you’re ill and you’re in hospital and the doctors want to give you perhaps oxygen or even put you on a drip and all sorts of things, what do you feel about this? He said no, he doesn’t want any messing about.” (Barbara, eighty-five-year-old woman, mother) |
Vulnerability to suggestion | • Safeguarding decision-making process by knowing the person well • Transparent communication | “Unless you really get to know that person and know who they are as a person, you’re not going to notice anything different … whoever makes or becomes an assistant decision-maker needs to be able to spend time with that person as in a live-in situation …” (Terri, fifty-eight-year-old woman, daughter) “Family [members] have got to be kept in the loop communication-wise. They have got to, be it a written report or a verbal report …” (Tony, sixty-seven-year-old man, living with dementia) |
Impulsivity | • Managing risks | “I think you have to let people do it and perhaps take away as many of the risks as possible and let them still do it. And you’re dancing around the edges trying to keep him safe …” (Barbara, eighty-five-year-old woman, mother) |
Difficulty communicating choices | • Assistive technologies • Alternate media (e.g. visual, tactile) • Photographs and cards with significant people or regularly used words | “The fact that someone can’t easily express what they want or what they think should not be a barrier to their inclusion or participation so it’s about reasonable adjustment. To have a note taker is obviously easily enough done.” (Liesel, sixty-five-year-old woman, partner) “I go ‘can you show me? If you can’t show me, write it’.” (Richard, seventy-five-year-old man, husband) |
Barrier | Strategies | Exemplars |
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Social isolation | • Support groups • Circles of support | “… in this area we’ve created a support group, peer support group, and within that we have family, friends, neighbours, people with dementia … gradually trying to break down that isolation.” (Liesel, sixty-five-year-old woman, partner) “… [person with dementia] has a circle of friends that help him make decisions. They have a sort of a conference type situation, or he’ll go to one of them and ask.” (Barbara, eighty-five-year-old woman, mother) |
Lack of suitable options | • Tailoring individualized approaches to traditional service models | “Because by respite what they meant was short term stay in residential aged care and they [dementia area advisers] were insisting on it because they know that you can’t keep going by yourself and you can’t, and also because they know that there are not alternatives easily available … [so] we’re organizing for her to go and spend some time in [city] with her family and I’ll have some time at home alone and a care worker will go with her and that’ll be good …” (Liesel, sixty-five-year-old woman, partner) |
Attitudes of service providers | • Advocacy | “I had to reprimand one. [Support worker] actually said that [person with dementia] couldn’t do something and he had to go and do something else. Unfortunately, I heard and said do you know [person with dementia] pays your wages? It’s his house and he’s a grown man. He apologized.” (Barbara, eighty-five-year-old woman, mother) |
Opposition from other family members | • Independent and credible health professionals • Independent “ombudsman” | “I believe it should be the role of the GP to instigate that conversation with the person living with dementia and then with their partner or family or whoever, to be made aware of the benefits of supportive decision-making …” (Maisie, fifty-five-year-old woman, daughter) |
Supported Decision-Making Arrangements
I think that’s one of the first things I would be wary of, the person who was … unless it was my mother or sister or [wife] or somebody like that, who knows me and I have got complete faith in. If it was someone who [was] employed … I don’t know who they are. I don’t know what they are like. So, you don’t give your innermost thoughts to somebody who you don’t know what they are going to do with them. (Derek, seventy-two-year-old man living with dementia, interviewed with wife)
… on balance, a little bit of both is probably what you need. The objectivity and the guidance … (Daniel, seventy-five-year-old man, husband, interviewed with wife)
… if there was a third party involved in effect, independent of them to consider both sides of what’s involved in the decision, the outcomes may be different and may be better for the person in care. (David, sixty-three-year-old man living with dementia, interviewed alone)
So, highly qualified people who can make a difference and then can comment intelligently on the problem at hand. If they don’t understand it, they will seek it out, seek the answer out. (Tony, sixty-seven-year-old man living with dementia, interviewed alone)
… there would be, I’m sure, family and carer objections all over the place. “They can’t do it as good as us. They don’t know him as well as we do” … (Tony, sixty-seven-year-old man living with dementia, interviewed alone)
Constraints on Decision-Making
… my mother had to pick one of [daughter and son] to be the decision-maker. Her heart would be with me but the pressure for her culturally would be to choose my brother because he’s the bloke. (Yulie, fifty-seven-year-old woman, daughter, interviewed alone)
I would feel if I don’t more or less do what they say, or they suggest, even though they know how I feel, they might just say “okay well you do what you want to do” and then they leave. (Ruby, sixty-seven-year-old woman living with dementia, interviewed with husband)
Safeguarding Decision-Making
If you get someone from outside who’s looking at the circumstances and they come they say, okay I think it would be a very good idea, this is what we could do and how we could do it, but then have it modified or altered by, be it [daughter] or whoever, who looks at me from the heart, rather than from the reality—they know me from the heart, rather than the reality. (Sarah, seventy-one-year-old woman living with dementia, interviewed with husband)
That’s really, a real bucket of worms that one … I can equally see a case where the carer, for argument’s sake, has a mercenary viewpoint and arranges to suit his [sic] own sort of end … it’s fraught with danger that one, from both sides. It’s one that’s easily abused. (Chris, seventy-one-year-old man, husband, interviewed with wife)
… it’d be nice if there was also an oversight in that as well. Like an ombudsman type system where those decision-making processes could be questioned if need be or reviewed so that it’s not just … becoming a token system … (David, sixty-three-year-old man living with dementia, interviewed alone)
… if it was made like a protocol, like a guideline, I think people then do [adopt a supportive approach], but for me for instance if I come and said look “I’ve been reading and I think this and this”—well “so what?” They [other family members] don’t really listen to you or they think that’s your opinion. (Maisie, fifty-five-year-old (bereaved) daughter, interviewed alone)