“Did I make the right decision?”: The difficult and unpredictable journey of being a surrogate decision maker for a person living with dementia

Abstract

Many people living with dementia eventually lose the capacity to make their own decisions and will rely on another person – a surrogate decision maker – to make decisions on their behalf. It is important – especially with the increasing prevalence of dementia – that the role of surrogate decision maker is understood and supported. This qualitative study explored the experiences of 34 surrogate decision makers of persons living with dementia in Australia. Face-to-face and telephone interviews were conducted over six months in 2014. Five themes were identified: becoming the only – or main – surrogate decision maker; growing into the role of surrogate decision maker; dealing with the stress of making decisions; having to challenge healthcare professionals; and getting support – or not – from family members. An overarching construct tying the themes together is the description of the participants’ experience as being on a difficult and unpredictable journey. Healthcare professionals can provide support by acting as empathic guides on this journey.

Keywords

Australia dementia family caregivers proxy surrogate decision maker

Introduction

Dementia is a major health issue and its worldwide prevalence is increasing significantly (Ducharme, Couture, & Lamontagne, 2012; Lord, Livingston, & Cooper, 2015). One of the main characteristics of dementia is the gradual loss of decision-making capacity and the need for other people to be involved in decisions affecting the person living with dementia (Petriwskyj et al., 2014; Rid & Wendler, 2010).

A key challenge for family members and carers of persons living with dementia is to facilitate ongoing input to decisions by the person living with dementia. The experience for most people with dementia is that another person does not normally take on the role of decision maker for the person overnight. It is more typically a gradual process where one or more family members take on increasing responsibility over time (Jox et al., 2012; Samsi & Manthorpe, 2013).

In the early stage of dementia, family members will often pursue shared or supported decision-making (Smebye, Kirkevold, & Engedal, 2012). This may involve the provision or explanation of information, talking through issues with the person, helping them to consider options, but ultimately leaving the decision to the person living with dementia. This process helps to maintain the person’s autonomy and dignity by reducing the need for others to make decisions on the person’s behalf (Davidson et al., 2015).

In the later stages of dementia, the person will often get to a point where they are no longer able to make decisions for themselves – even with support from others. At this point, decisions such as those about lifestyle, healthcare, medical treatments, and end-of-life care become the responsibility of someone else – referred to as a substitute, proxy, or surrogate decision maker (Lord et al., 2015; Samsi & Manthorpe, 2013; Wendler & Rid, 2011). While the role of surrogate decision maker is typically taken by a close family member, there is usually some form of legislative framework that gives guidance on who would be the appropriate person or persons. The specifics of these frameworks vary both between and within countries.

There has been a reasonable amount of research on surrogate decision-making in non-dementia settings – particularly intensive care units and hospital wards. A systematic review of 40 such studies by Wendler and Rid (2011) found that most surrogate decision makers experienced negative emotional burden and this could be substantial and long lasting. Negative effects included stress, guilt over decisions made, and doubt about whether they had made the right decisions. Around a quarter of the studies also reported beneficial effects for a few surrogate decision makers – particularly around supporting the patient and feeling a sense of satisfaction in their role as decision maker. Similarly, Nunez et al. (2015) found that some surrogate decision makers were able to regain a sense of control and counteract a feeling of helplessness by going through the decision-making process.

Given the increasing prevalence of dementia around the world and the complexities around surrogate decision-making for this group (Wolfs et al., 2012), it is important to understand how surrogate decision makers experience this role and how they can best be supported in it. The following sections in this paper will review literature that focuses on the experience of surrogate decision makers of people living with dementia.

Surrogate decision makers of people living with dementia often report confusion about their role and a lack of confidence in being able to make decisions for their loved ones (Caron, Griffith, & Arcand, 2005; Forbes, Bern-Klug, & Gessert, 2000). They commonly experience uncertainty, emotional stress, and burden (Forbes et al., 2000; Givens, Lopez, Mazor, & Mitchell, 2012; Lopez & Guarino, 2011).

The experience of surrogate decision makers reported by Livingston et al. (2010) included the difficulty of making decisions against active resistance from the person living with dementia and changing their role to be a “patient manager” rather than just a family member. Other issues included the importance of family cohesion and professional support, and dealing with family disagreements – especially around end-of-life treatment and care decisions.

Samsi and Manthorpe (2013) investigated the experience of surrogate decision makers of people living with dementia. Participants reported that making decisions on behalf of someone else was confusing and stressful, and this was particularly so for adult children. This was likely due to them being less familiar than spouses with the preferences and wishes of the person living with dementia.

Some of the issues for surrogate decision makers of people living with dementia highlighted in a qualitative metasynthesis of studies focusing on family involvement in decision-making in the nursing home setting (Petriwskyj et al., 2014) include: the variation in the experiences of decision makers; their role as advocate for the person living with dementia; the importance of communication and relationships with care staff; the complexity of decision-making that involves knowing their relative’s wishes, their own values, and the context of the illness; and the range of positive and negative consequences they experience.

A recent systematic review (Lord et al., 2015) found that relatives of people living with dementia experience the process of surrogate decision-making as challenging and at times distressing. This is especially the case when decisions were made against the known wishes of the person living with dementia, or when there was an absence of health professional support. Lord et al. (2015) provide a comprehensive overview of barriers and facilitators of surrogate decision-making by family carers of people living with dementia.

The current study reported in this paper was initiated to build on and complement existing research in this important area, where there is a lack of research within an Australian context. While acknowledging the role and importance of shared and supported decision-making (Fetherstonhaugh, Rayner, & Tarzia, 2016; Fetherstonhaugh, Tarzia, & Nay, 2013), the study was focused on family carers of people with dementia who were at the stage of being surrogate decision makers. The significance of the study is that it focuses specifically on surrogate decision makers of people with dementia, and that it draws on the experience of surrogate decision makers who had already made significant decisions.

The research questions underlying the study were: “How do surrogate decision makers of people living with dementia describe their experience of this role?”; “How do surrogate decision makers of people living with dementia approach decision-making?”; and “How can surrogate decision makers of people living with dementia be best supported in their role?” This paper reports the findings regarding the experience of being a surrogate decision maker. Findings related to how surrogate decision makers approach their role have been reported elsewhere (Fetherstonhaugh, McAuliffe, Bauer, & Shanley, 2016) and findings related to their support needs have also been be reported separately (Shanley, Fetherstonhaugh, McAuliffe, Bauer, & Beattie, 2017).

Methods

Design and setting

A qualitative study with semi-structured face-to-face or telephone interviews was conducted in the state of Victoria, Australia.

Participants

The participants were family members of individuals with dementia (either living or deceased) who had made a major decision on that person’s behalf (e.g. moving into residential care, giving up driving, consenting to medical treatment or end-of-life care). Participants included individuals who had been officially appointed Enduring Guardian (or Agent) under an Enduring Power of Attorney (Medical Treatment), as well as family members who acted as informal surrogate decision makers. Recruitment was through community-based carer and dementia groups (Carers Victoria and Alzheimer’s Australia) and through advertisements in local newspapers. English language fluency sufficient for participation in an interview was required of participants. A total of 34 surrogate decision makers were recruited and interviewed (see Table 1). Five participants were partners of the person with dementia, and 29 participants were adult children/children-in-law of the person with dementia. Most participants were female, and most lived in metropolitan areas.

Table 1.

Participant characteristics (N = 34).

Characteristic	n (%)
Caregiver age (M = 57.4, SD = 11.9)
Years caregiving (M = 9.6, SD = 7.6)
Relationship of caregiver to person with dementia
Husband/wife/partner	5 (15)
Adult child/child-in-law	29 (85)
Caregiver gender
Male	7 (21)
Female	27 (79)
Caregiver location
Metropolitan area	31 (91)
Rural area	3 (9)

Ethical approval

Ethics approval was obtained from the La Trobe University Human Ethics Committee (Application No. 13–046). All participants were provided with information about the study and were given the opportunity to ask questions prior to participation. Signed consent was obtained from all participations before interviews.

Interviews

Semi-structured interviews of up to an hour and a half in duration were conducted with participants face-to-face in their own homes or at a public venue (22 participants) or via telephone (12 participants) using a semi-structured interview guide that was developed from a review of the literature and stakeholder consultation. Interviews occurred over a six-month period in early 2014. The types of questions asked included: “Can you tell me about how and why you became the substitute decision maker for [the person with dementia]?”; “How did you feel about having to carry out [person with dementia]’s wishes?”; and “What, if anything, were particularly difficult aspects of making those decisions?” Interviews were audio-recorded with permission and transcribed by an independent agency, with the transcripts sent to participants for verification prior to analysis. Data collection was stopped when it was felt that a “saturation point” had been reached – when interviews were just giving more of the same data that had already been collected (Charmaz, 2000).

Analysis

Transcripts were entered into QSR International’s NVivo 10 qualitative data analysis software for coding. Subsequent analysis of the interview content involved the identification, analysis, and reporting of patterns or themes arising from the data (Braun & Clarke, 2006). All the interviews were first read by three of the researchers to gain an overview of participants’ perspectives and then analysis of three interview transcripts was independently undertaken by the whole research team, who then met to compare and review codes and preliminary themes. These were used as a starting point for an iterative analysis of all transcripts, leading to the development of the final themes. One researcher (LM) then coded the remaining interviews. The analysis was then checked by the other members of the research team until consensus was reached about the final themes.

Findings

Five main themes capturing the experience of being a surrogate decision maker were identified from analysis of the interview data and these will be discussed in detail below:

Becoming the only – or main – surrogate decision maker

Growing into the role of surrogate decision maker

Dealing with the stress of making decisions

Having to challenge healthcare professionals

Getting support – or not – from family members

Becoming the only – or main – surrogate decision maker

Many carers took on the role of the main surrogate decision maker almost by default, as they were single, lived close by, had fewer commitments or problems than other siblings, or had traditionally assumed the role of carer in the family. They were therefore perceived by themselves and by other family members as being the best “candidate” to take responsibility for decision-making on behalf of the person living with dementia.

They just thought ‘Oh well, he’ll do it, and that’s right because he’s got more capacity to do it and because they were busy’….See both my sisters are single parents and my brother was going through a bit of a hard time too at the time and I was seen as I guess having more capacity to do it. (P8: Son)

Because I was the unmarried one and was able to do it. The others all had families. And that was my decision. (P16: Daughter)

Yeah, because they work full-time and, and they’ve got a busier life than me. And my situation’s changed now after my husband passed away. So it looks like I’m the one that has, I have to look after everything and do everything for her. (P2: Daughter-in-law)

Participants spoke about the isolation they often felt as a result of being the sole decision maker for the person with dementia and feeling that they were “doing it alone”. This was exacerbated when other family members did not appreciate the daily realities of living with dementia, were critical of decisions made, or offered little if any support.

I mean we always discussed these decisions um but eventually it comes down to my responsibility to take them. (P33: Husband)

And Mum’s here, and virtually I haven’t had any help from the family ever since I started packing Mum up…. And I think, ‘Right, that’s it,’ you know. ‘I’m done!’ I said, ‘You’ve got…’ you know, I forget. I say to her, ‘You’ve got five children. Where are the other four?’ (P3: Daughter)

Several surrogates spoke about the difficulty they experienced as they adjusted to the role reversal between parent and child that seemed to occur as a result of taking on increasing caregiving and decision-making responsibilities.

But sometimes I have, I will and I need to make those tough decisions, and I don’t wanna be in that position because, yeah, I just don’t, because she’s, she’s my mum. She’s not my child. But there is that, I guess that change in dynamics of the relationship that I have to come to terms with and, as she gets older, obviously that will become even more critical. (P24: Daughter)

Growing into the role of surrogate decision maker

Often participants had started off by assisting the person with dementia with small decisions, and this assistance had evolved gradually over time as the person living with dementia became increasingly unable to make their own decisions. Eventually, it got to a point where the carer assumed sole responsibility for decisions. This process was influenced both by the progressive deterioration of the person with dementia and by the growth in confidence that carers experienced in their role as surrogate decision makers.

Oh look, it was really a progression; I think she was the decision maker probably right up until the diagnosis and perhaps for some little time afterwards. But progressively it became necessary for me to make more and more [decisions]. (P33: Husband)

So gradually over the years what had happened was I was doing a lot of these things and she signed them over to me anyway. (P27: Daughter)

I’ve had people say to me you know your mother could make decisions about this. And the thing is probably at an early stage of dementia most people can, but it gets to a point where I think they don’t even want to make a decision, that they feel more safe and that they’re happy that somebody takes that extra burden away from them. (P32: Daughter)

If I asked him now, he’d probably say… Well, I don’t know what he’d say, actually. We’re, we’re not asking him now. We’ve actually decided we’re just going to look after him and he’s given us his wishes. (P4: Wife)

Carers spoke about “learning on the job” as they became increasingly familiar with the types of difficult decisions that needed to be made and adapted to what were often a chain of crisis situations.

I just thought, ‘I don’t even know how I’m gonna find someone and, and I don’t, I don’t know if they’re gonna be able to help me,’ so I was just kind of going from, stumbling from one decision to the next, thinking, ‘Okay, well this seems like the right thing to do now. What do I do next? Okay. Now this is the next problem. This is what I do.’ (P34: Daughter)

And I keep being stunned that we sort of hit little crises, and I think, ‘Right, that’s gonna be it… Next week could be it’, and then we get over them. Somehow, we find a solution. (P11: Daughter)

Dealing with the stress of making decisions

Several carers described feeling confused and uncertain about making decisions on their family member’s behalf, especially when it was necessary to override the person’s wishes, or if the person with dementia resisted the decision. The unpredictable nature of dementia added to surrogates’ uncertainty and distress.

It was difficult. And, and, and it was confusing. I think that’s the other thing. Very confusing. I still don’t know, if I was confronted with exactly the same things, what I would do now. (P4: Wife)

Oh yes, she let me do all the decisions after that like I had no problems with making the decisions but it was always questionable if it’s the right decision or not at the time. (P29: Husband)

Surrogate decision makers spoke of not knowing where to access information or services, and of not having adequate time at their disposal to investigate possible support options due to the time and labour intensive demands of caregiving, further adding to their stress.

I felt that, that there could be a great deal more… it’s really hard to get advice or to find out what is the best way to approach, you know, these sorts of situations…as a society, we don’t seem to have any structure in place to manage that process or support it. (P1: Son)

And that was a battle finding information about that you know, where to go, who to see and that sort of thing… (P13: Daughter)

The emotional toll of being the sole surrogate decision maker and being responsible for life and death decisions was enormous for some participants and was sometimes complicated by doubts as to whether they had made the right decision/s.

Being put in a position where I had to make life or death decisions, and having to kind of dictate the quality of the last few years of his life was not something that was easy to come to terms with when he died because I felt like I, did I make the right decision? If it, if it ended like this, did I make the right decision, you know? (P34: Daughter)

And also, and that’s why I think my grief’s, so much grief around making those decisions. “I hope Mum I’ve made …” I mean I am comfortable with them but, at the time, thinking, “I know I’m doing the best I can for you. I just hope this is what you would have wanted.” (P25: Daughter)

In spite of the stress that most participants expressed, there was also a satisfaction derived from providing care and making decisions that they believed reflected the needs of their loved ones.

And I would, I’d do it again tomorrow. I have no regrets whatsoever, you know. (P16: Daughter)

So no, I don’t think there is anything we would have done differently. And I, I think it worked out as well as it could, you know. (P7: Daughter)

Having to challenge healthcare professionals

A commonly reported experience was healthcare professionals not understanding that the person with dementia really did have diminished capacity, or – even if they did accept it – not appreciating the associated implications. Participants reported being doubted and their decisions being undermined at a time when they most needed support. A number of participants spoke of concerns they had with the care delivered by the person with dementia’s general practitioner, who either did not recognise dementia or were very passive in their management of the condition.

[The doctor] thought I was being interfering, over-protective and, you know, why was this woman here? Because there was clearly nothing wrong with her. And I was trying to put my position that, you know, that she had been confused and she was denying it, and the doctor was believing her. And then she said, ‘It must have been, you know, I, I know I was a little bit confused. It, it, it must have been when I drank the boot polish.’ And the doctor looked at her and he said, ‘What do you mean?’ She said, ‘I thought it was sherry.’ (P1: Son)

She had got her in to see a geriatrician who turned out to be a friend of hers when she went to school, so it was actually, it was the only way we manipulated Mum into having the appointment because her GP, I believe, was negligent. Either he didn’t want to do anything about the dementia or he didn’t believe in it. (P12: Daughter)

Other participants found the attitudes or approaches of community or residential aged care staff to be problematic. They constantly had to advocate for the person with dementia in the face of doubt, criticism, or ignorance on the part of staff.

Oh the clinic at [name of clinic] said he’ll have a, an overseer or a person that will look after him. She’s the worst thing I ever had. She came. She sat there and she looked at him, and she said, ‘I don’t think there’s anything wrong with you George. Why don’t you take yourself into the city and go to the museum, and have a, go, go over and, you know, do something? You know, get out!’ I just looked at her and I thought, ‘Are you nuts?’ I took her down to the car and I said, ‘Look I’m sorry but I thought you were here to help me.’ I said, ‘You’ve just undone six months of work on him.’ And she said, ‘What do you mean?’ I said, ‘He has Alzheimer’s.’ ‘Oh’ she said, ‘I don’t think he has.’ (P30: Wife)

So I do need to keep reminding them of what [name of person with dementia]’s living will says or what his wishes are because the individuals that are implementing it, you know, do need reminding. So, in a sense, there has to be someone who guides that, otherwise wishes don’t get implemented, even comfort wishes. (P4: Wife)

It’s a bit hard also when you’ve just finished telling the nurse that your mother has dementia and she turns around and says “Can you ask your mother on a scale of one to ten what her pain threshold is?” (P32: Daughter)

Getting support – or not – from family members

The degree of support that was available from other family members varied considerably. While some participants came from close families that were used to communicating and working well together, others found themselves having to rise to the challenge of working alongside adult siblings and resolving conflict in order to reach important decisions. Yet others struggled to access even basic support from other family members.

And we still, I think the fact that we could work through it together, it was incredibly empowering. Like it’s, to actually achieve, know that you’ve worked together … and, but I give a lot of it to my parents. I mean they brought us up to be like that. Yeah. And to resolve conflict and work things out, and I think that we’re really lucky that we were able to do that. (P25: Daughter)

You think, when do you have to come together with your siblings and reach a consensus about anything? You live these independent lives, suddenly your parent gets dementia you’ve gotta come together and reach consensus. Now reaching consensus was impossible whether it be… whether she stayed at home, who bought the house, where she was placed. (P8: Son)

A difficult and traumatic point, if it comes, is to recognise when decision-making has to be handed over to a higher authority (e.g., State Trustees, The Office of the Public Advocate). Even this process can be complicated when family members give inaccurate or misleading information, or even simply lie. Interfering and trivial improper decision making can occur. A disruptive sibling may not be obvious to outsiders. There may be no people who will listen and act, as some things are seen as family matters only. (P28: Son)

Discussion

Findings from this study are consistent with the existing literature. These include the fact that family carers who become surrogate decision makers for people living with dementia grow into this role over time because of the progressive nature of dementia and the diminishing capacity of the person living with dementia (Jox et al., 2012; Samsi & Manthorpe, 2013). Surrogate decision makers often experience confusion, conflict, and stress related to their role (Lopez & Guarino, 2011; Lord et al., 2015; Wendler & Rid, 2011). They often have to advocate for the person with dementia if they believe medical, nursing, or other staff are not providing the best possible care for the person living with dementia (Givens et al., 2012; Livingston et al., 2010; Petriwskyj et al., 2014). Family cohesion and support from professional caregivers make the role of surrogate decision maker easier (Ducharme et al., 2012; Livingston et al., 2010; Petriwskyj et al., 2014).

While the themes identified in this study are consistent with other research, an overarching construct that ties the themes together – and which has not been reflected in other literature – is the idea of the participants being on a journey as surrogate decision makers. This is particularly relevant for carers of people living with dementia as they need to make a broad range of decisions over a long period of time. The types of decisions that need to be made change significantly during this time. This is in stark contrast to people who have to make short-term surrogate decisions such as in the event of a sudden acute illness for someone who has maintained capacity up to that point (Wolfs et al., 2012).

The themes identified in the data reflect the different stages and challenges of the surrogate decision maker’s journey. They do not set off on this journey knowingly or deliberately. They find themselves pulled along into unknown territory and typically take time to realise that they have started on a new, unpredictable journey. Most carers do not have the benefit of a road map that provides clear direction and certainty for this journey.

The first part of this journey can be very stressful as the family carer starts to question whether a loved one who has always made their own decisions is losing the capacity to do this. Such questioning and uncertainty can cause conflict with the person or other family members who do not believe that anything has changed. Either by choice or chance, many family carers find themselves left with the responsibility of making more and more decisions for their loved one. They have to shift their focus from assisted, to supported, and, gradually, to surrogate decision-making. Some carers can feel isolated and alone as they navigate their way through this journey. Other carers have the benefit of supportive family members who come along on the journey and share the decision-making.

Instead of becoming easier, the journey will often get more complex and continue into new unknown territories. The person living with dementia will typically continue to lose the capacity to make their own decisions. The family carer will often find themselves having to advocate for the person living with dementia. This may include confronting healthcare and other professionals who are not providing the type of care that best supports the quality of life of the person living with dementia.

The surrogate decision maker will face new challenges as the person living with dementia approaches the end of life. Many family members are not familiar with the trajectory of the late stages of dementia and feel unprepared to make critical decisions at this time (Robinson et al., 2014). This is compounded by the fact that many of these decisions are irreversible. The last stage of the journey – after the death of the person living with dementia – can be a positive experience for surrogate decision makers who feel confident about the decisions they have made throughout the journey and who feel supported in these decisions. Other surrogate decision makers – who have struggled to make decisions and/or have not felt supported throughout this journey – can experience ongoing regret and remorse.

Clinical implications

If the experience of surrogate decision makers can be described as being on a difficult and unpredictable journey, how can health and community care professionals provide appropriate support to them? We propose the concept of the professional being an “empathic guide” on this journey. Such a person is able to help the surrogate decision maker plan for the future by understanding their situation and being able to imagine, consider, and anticipate, likely needs for information and support. The empathic guide is aware that the surrogate decision maker is on an unpredictable journey and their issues and needs will change over time. The role of empathic guide may be taken by various professionals – such as the person’s medical officer, case manager, dementia counsellor, community nurse, community or residential care provider.

Important aspects of the role of the empathic guide include: development of a caring and responsive relationship with the surrogate decision maker and the person living with dementia; being sensitive to the uncertainty, stress and possibly isolation that surrogate decision makers may be feeling; early and ongoing discussion of advance care planning; clear explanations of the likely trajectory of dementia, including towards the end of life; listening to, and addressing, concerns and questions of the surrogate decision makers; being aware of family and other supports that the surrogate decision maker may or may not have; helping surrogate decision makers work through possible courses of action; giving surrogate decision makers time to make decisions; providing emotional support to surrogate decision makers both during, and after, the making of difficult decisions; and facilitating support from other professionals or agencies, especially if they can no longer be involved with the surrogate decision maker (Arcand, 2015; Lord et al., 2015; Vig, Starks, Taylor, Hopley, & Fryer-Edwards, 2007).

Strengths and limitations

This study has provided rich data to present a new perspective of the surrogate decision maker’s experience as a difficult and unpredictable journey. The researchers have taken steps to ensure the trustworthiness and credibility of the findings by using a large enough and diverse sample to achieve saturation in participants’ responses; verification of the data by participants; member checking of emergent propositions by the research team; and a systematic and rigorous approach to analysis. A further strength of the study is the practical guidelines provided to professional staff to help them provide support to surrogate decision makers throughout their journey.

The study nevertheless has the limitation of many qualitative studies – that it is based on a limited number of self-selected participants from one geographical area. A further limitation is that only surrogate decision makers who could converse in English participated. Consequently, it cannot be said that the experiences that were expressed are necessarily representative of all surrogate decision makers of people with dementia. The reader will be the final arbiter of whether the findings ring true.

Conclusion

The experience of surrogate decision makers of people living with dementia can be described as a difficult and unpredictable journey. They are often on this journey before they realise it. They are unprepared and typically do not have a road map for the journey ahead of them. They often feel confused, uncertain, isolated, and alone. They are typically not aware of the decisions they will need to take in the future. Their passage through this journey will be made more or less difficult by the level of support they receive from others, including other family members and healthcare professionals. Even at the end of the journey, they may still feel confusion and uncertainty about the decisions they have made along the way.

Healthcare professionals can provide support to surrogate decision makers by being empathic guides on this journey. This entails an awareness and sensitivity to the individual needs of family carers, providing information, education and guidance without taking over, and providing emotional support to surrogate decision makers as appropriate to their needs and circumstances.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was funded by the Dementia Collaborative Research Centre: Carers and Consumers as part of the Australian Government’s Dementia Initiative. The views in this work are the views of its authors and not necessarily those of the Australian Government.

Deirdre Fetherstonhaugh is the director of the Australian Centre for Evidence Based Aged Care (ACEBAC) at La Trobe University in Melbourne, Australia. Her research focuses on the translation of research evidence into practice, the ethical implications of clinical practice, decision-making for people with chronic conditions such as dementia or renal failure, sexuality and dementia, and clinical risk in residential aged care.

Linda McAuliffe is a researcher at the Australian Centre for Evidence Based Aged Care (ACEBAC) at La Trobe University, Melbourne, Australia. Linda’s research interests include the effect of dementia caregiving on psychological and physical health outcomes; pain assessment and management in older adults with dementia; and sexuality in the residential aged care setting.

Christopher Shanley is an adjunct associate professor at the Centre for Applied Nursing Research, Western Sydney University, Australia. His professional background is in nursing and he has a long standing involvement in education and research in the fields of aged care, dementia care, advance care planning, and end-of-life care. His most recent project has been to develop a national website about planning ahead for Alzheimer’s Australia called Start2Talk.

Michael Bauer is a senior research fellow at the Australian Centre for Evidence Based Aged Care (ACEBAC) at La Trobe University, Melbourne, Australia. His career has spanned health services research, healthcare, and teaching. Current work aims to translate knowledge to improve service delivery and enhance the lives of older people in care environments. He has been instrumental in developing a range of practical resources for health professionals, carers, and service providers.

Elizabeth Beattie, professor of Aged and Dementia Care, School of Nursing, Queensland University of Technology, Australia, directs the Dementia Collaborative Research Centre – Carers and Consumers and Dementia Training Australia in Queensland. Elizabeth has an international nursing leadership profile and a sustained record of competitive research funding and publication. Her research is focused on improving the quality of care and quality of life of people living with dementia and those who support them.

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