Thirty-six interviews were undertaken across metropolitan and regional areas in three Australian states (Western Australia n=11, New South Wales n=15, South Australia n=10). The interviews lasted between 21 and 132 minutes (average 60.5 minutes). Analysis of the interview transcripts and researcher memos led to extraction of two themes relating to participants’ experiences and values in decision-making. We have labelled these “the person in relationship over time” and “maintaining involvement.” Participant views on the practical issues associated with implementing supported decision-making are described within four themes: “facilitating decision-making,” “supported decision-making arrangements,” “constraints on decision-making,” and “safeguarding decision-making.” Each theme is described and illustrated with exemplars.
Experiences and Values in Decision-Making
The Person in Relationship Over Time
Participants described the importance of involvement in decision-making as a means of giving expression to a person’s unique identity and personhood. However, decision-making was not just “a single individual” at “a single moment” in time. Decision-making was described as being the product of multiple agents, linked through relationships and acting in roles over a period of time. In many cases the experience of dementia, which triggered a range of decisions and required significant support from close family members, prompted participants to describe the problem, and their responses, as being jointly owned.
… 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)
Through this relational perspective, participants described how their own goals and values were shaped by considerations of the needs or desires of others. However, while decision-making was understood in a social context, many also described reduced access to social networks. One couple reported that many of their friends had “dropped off” since the diagnosis. For others the experience of stigma associated with their dementia left them less confident in their own abilities.
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)
In rare cases this social exclusion was more explicit and directed by other family members. One woman described how her father’s feelings of shame associated with his wife’s dementia contributed to his tendency to exclude her from social situations and opportunities to engage with the broader community.
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)
In the context of declining social networks, there was an increased reliance on close, familiar people, usually close family members. One participant described how she observed that many people living with dementia lacked access to the normal social networks in which people explored decision-making options.
… 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).
Participants also described temporal aspects in decision-making, drawing on their histories and understandings of their likely future situations. For people with dementia, this temporal perspective was often influenced by difficulties remembering the past and a sense of foreboding about an uncertain and distressing future.
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)
For some, this prompted a desire to exert some control through planning for the future, while others preferred to maintain a focus on the present. These findings resonate with previous studies on how people with dementia and their family members understand their future in terms of a “not yet” horizon (Hellström and Torres 2016). Many participants also described significant transitions in key relationships and decision-making roles as the condition progressed, typically through close family members “moving in” or adopting substitute decision-making roles. A number of family members described how this was a difficult transition.
… 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)
These descriptions demonstrate relational and temporal dimensions of the decision-making context, reflecting the idea of the “person in relationship over time.”
Maintaining Involvement
A dominant theme across many interviews, voiced by people with dementia and family members, was the moral value of maintaining involvement of the person with dementia in decision-making for “as long as possible.” Participants also illustrated a range of practical benefits associated with this approach.
…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)
One woman, a retired nurse, described how making her own decisions about her routine healthcare was an important part of feeling some sense of control in the context of having lost control in other areas.
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).
For another, the key thing was the feeling of being acknowledged through the decision-making process, rather than necessarily controlling the outcome of the decision.
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).
These statements suggest that people with dementia felt that the efforts of family members to maintain their involvement in decision-making constituted an acknowledgement and contributed to their self-esteem and sense of personhood, resonating with previous research (Fetherstonhaugh, Tarzia, and Nay 2013).
Most family members corroborated these views, describing maintaining the person’s involvement in decision-making as a way of maximizing their wellbeing and quality of life. For some, this was described in moral terms, associated with respect for the enduring personhood of a person with dementia.
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)
Other benefits included enabling the person to maintain their habitual roles and responsibilities in relation to family members or other social networks. Finally, some also described their own distress or moral conflict associated with making substitute decisions and hoped to avoid this wherever possible.
… 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)
While a majority of participants from both groups expressed support for maintaining involvement of the person with dementia in decision-making, there was also an acknowledgement that this involvement would inevitably change over time.
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)
Some people with dementia worried that they might make decisions that were inconsistent with their deeply-held values.
… 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)
Others expressed a preference to withdraw from active roles in decision-making, typically in cases in which there were trusted family members they could delegate to. This delegation to others was described with a sense of acceptance and relief.
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)
Family members also anticipated inevitable transitions in the person’s involvement in decision-making, often referencing the stage of the person’s dementia.
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)
Family members tended to rationalize substitute decision-making with reference to the safety of the person with dementia or the need to make decisions that would manage their behaviour and keep other people safe.
… [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
Participants’ views on supported decision-making are organized with reference to four themes: “facilitating decision-making,” “supported decision-making arrangements,” “constraints on decision-making,” and “safeguarding decision-making.” In responding to these questions, it was noticeable that some participants did not immediately perceive a difference between supported and substitute decision-making and required explanation and clarification of the concepts.
Facilitating Decision-Making
People with dementia and family members described a number of generic strategies aimed at facilitating the involvement of the person with dementia in decision-making. Taking time to explain concepts, being patient, repeating information as required, and not rushing the person with dementia were all seen as pivotal, with time constraints mentioned as a barrier to supported decision-making. Prompting was described as finding cues or giving increasing amounts of information which would function like “some little key,” unlocking a particular memory or understanding of a concept in order to orient a person to a decision or enable discussion about their wishes. People with dementia identified how close, familiar people who knew them well were often best placed to provide specific decision-making support in efficient ways.
… [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)
Interpreting or “translating” information into simpler concepts was frequently mentioned, as well as the use of memory prompts or reorienting the person to the conversation. Others spoke of looking for repeated statements of the person’s preferences to confirm their understanding and the reliability of their request, particularly for more “serious” decisions.
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)
Family members described how their techniques were sensitive not only to the “stage” of a person’s dementia, but also to the type of cognitive impairment that they perceived the person to be experiencing (see table 2), as well as the broader social contexts which might also constitute barriers to decision-making (see table 3). Identification of these factors was associated with awareness of the person’s specific vulnerabilities as well as spared abilities and suggested a range of more targeted strategies for providing decision-making support. While these strategies were often effective, people with dementia and family members also identified practical and emotional difficulties associated with facilitating decision-making. Chris described a sense of distress associated with always having to be “the no person” for his wife, who had dementia. Josie described the experience of being “bombarded” with assistance from family members and the need to get the amount of support just right.
… 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)
Table 2 Clusters of cognitive impairment (as identified by participants) and strategies to facilitate decision-making Table 3 Social contexts constituting barriers to decision-making involvement (as identified by participants) and strategies to facilitate decision-making. Supported Decision-Making Arrangements
In response to questions about how supported decision-making might be implemented in their own personal situations, participants gave a variety of responses. It was quite common for participants to interpret the idea of supported decision-making with some initial alarm, associated with the assumption that the support would come from an “outsider,” intruding on existing relationships. This response was particularly common among participants interviewed with family members present. Close family members and friends were valued in terms of having “deep” knowledge of the person with long-term relationships that preceded the dementia diagnosis. They were perceived to be more trustworthy. One man described how he would be more likely to trust a supporter from within his family network than a person who was employed to undertake this role.
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)
Despite these established relationships and associated deep knowledge of the person with dementia, there were some issues identified with involvement of close family and friends in supported decision-making. These mostly related to their lack of experience or specific knowledge with respect to complex systems (e.g. aged care or social services). This was illustrated by instances in which people with dementia turned to specific family members or friends with relevant professional experience (e.g. health professionals) for help in making decisions. Other difficulties associated with utilizing close family members or friends in supported decision-making were competing priorities or conflicts of interest, disputes with other family members, and the family member’s own experiences of illness, functional decline, or burnout in existing caring roles. In the context of these limitations, external supporters or facilitators were seen to have value in terms of providing expertise relevant to a decision and being independent from family relationships and hence able to provide more objective input.
… 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)
There were some interesting differences among participants living with dementia who were interviewed alone. David described how his sister, who was also diagnosed with dementia, had experienced her children “taking over,” making decisions that he felt were driven by their own self-interest. Based on this, he described the value of an outside, impartial third party in protecting the person with dementia from self-interested decisions made by family members.
… 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)
Another participant living with dementia felt that independent supported decision-making “facilitators” could bring specialist knowledge pertinent to the issues and decisions facing the person living with dementia, particularly in areas that a lay person would not be conversant with.
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)
Interestingly these two participants did not immediately nominate the “supporter” role to family members, although both described accessing significant day-to-day support in decision-making from their spouses and social networks. They both saw that this role could be aligned with that of a “dementia key worker,” a support and service navigator role that they were both familiar with (cf. Renehan, Goeman, and Koch 2017). Both described the need for ongoing assessment of decision-making capacity and oversight of supported decision-making by a pseudo-ombudsman position. One of these participants acknowledged that family members would probably object to utilizing “outsiders” in this role.
… 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
In describing the possibilities for facilitating the involvement of people with dementia in decision-making, both groups of participants identified a range of constraints, which they saw as impacting on the number or types of choices available or the voluntariness of a person to freely choose one option over another. David, a man living with dementia, identified difficulties in taking the necessary time to make decisions when professionals required them to be made quickly, on a “corporate timeframe.” For many participants, financial constraints impacted on the options that were available and influenced healthcare and other lifestyle decision-making. In some cases, specific cultural beliefs and community expectations also appeared to constrain 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)
One woman living with dementia identified the potential difficulties that might arise in maintaining a supporter if she expressed a view that disagreed with what the supporter felt. She saw that this would lead to a risk of losing their assistance or endangering the relationship.
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
In discussions about safeguarding supported decision-making processes, many participants reiterated the importance of involving close, familiar people (typically family members). These people were often described as being more trusted because of their relational connection and their investment in “doing the right thing” by the person. For others, the value in involving these people was that they would be more likely to understand the person’s perspectives and values and be able to use this knowledge in assessing advice coming from other sources.
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)
However, alongside this was the recognition that close family members might also be a source of undue influence or abuse, even when purportedly providing decision-making support.
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)
In this context, some participants identified the possibility of involving independent third parties, either in professional roles or more informally through community support circles.
… 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)
Many people noted how decision-making in the context of dementia was potentially a source of conflict due to different beliefs, values systems, and “realities” experienced by different people in the person’s family and social networks. For some this led to a “collision of values” that was expressed in conflict around decision-making, and resultant communication difficulties. In some cases, these conflicts were described as being caused by the progression of dementia leading to transitions in decision-making (greater involvement by one family member), which were interpreted by other family members (who had not been as involved in the person’s care) as “taking over.” Others described histories of problematic relationships with other family members and how this impacted negatively on establishing collaborative decision-making processes. To address these issues, or pre-empt future problems, participants felt that proactive communication by the supporter would help other family members understand the process and would assist in keeping them informed and involved where possible. One respondent, who experienced conflict within her family associated with her advocating for maintaining her father’s role in decision-making, described how credible, independent professionals (such as their general practitioner) could have promoted supported decision-making principles and encouraged open discussion within the person’s family, beginning at the time of diagnosis.
… 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)