Hanging on to Some Autonomy in Decisionmaking: How do Spouse Carers Support this?

Abstract

In Australia, the majority of people with dementia live in the community with informal care provided by family, commonly a spouse. A diagnosis of dementia is a threat to one’s personhood and is often accompanied by perceptions of future dependency, which will involve the inability to carry out conventional roles and complete everyday tasks including making decisions. Being able to make decisions, however, is part of being a ‘person’ and it is through relationships that personhood is defined and constructed. In face-to-face interviews with seven couples (a carer and person with dementia dyad) and two spouse carers, this study explored why, and how, spouse carers support continued involvement in decision-making for people with dementia. The findings highlight the importance of loving and respectful relationships in the development of strategies to support continued decision-making for people with dementia.

Keywords

dementia spouse carers autonomy decision-making relationships

Background

Dementia among older people is increasing in Australia as the population ages (Australian Bureau of Statistics [ABS], 2013). In 2014, 15% of the Australian population was aged 65 years and older, and this is estimated to increase to 21% by 2054 (Australian Institute of Health and Welfare [AIHW], 2015). Current estimates put the number of people with dementia at 342,800, with the prevalence greatest among the very old (≥85 years of age), and this figure is expected to rise by a third over the next decade (AIHW, 2012). Dementia is the single greatest cause of disability in older Australians (Access Economics, 2009), and the second leading underlying cause of death (AIHW, 2013).

In Australia, influenced by social and policy changes, the majority of people with dementia live in the community and over a million people, mainly family members, are involved in their care (Pfizer Health Report, 2011). In 2012, 2.7 million Australians were providing unpaid informal care, assistance, or support to disabled and older Australians (AIHW, 2015). Most informal dementia care in Australia is provided by a spouse or partner (ABS, 2004, 2012) and women comprise the majority of carers. Spouse carers are often elderly and may be in poor health themselves. In addition to their caring responsibilities, the spouse carers of people with young onset dementia may also be in paid employment and raising children.

A diagnosis of dementia often presents a threat to an individual’s sense of self and personhood (Cohen & Eidsdorfer, 1986), and is accompanied by the expectation that it will become increasingly difficult to interact with the environment and others, to carry out conventional roles and to complete everyday tasks. However, to have one’s personhood acknowledged and respected is the right of every human being regardless of their capacity to be autonomous and it is through relationships that personhood is defined and constructed (Kitwood, 1997; Smebye & Kirkevold, 2013). O’Connor and colleagues (2007) argue that besides relationships, personhood is also constructed through one’s interactions with the world ‘where the living environment becomes central to understanding one’s self’ (p.127). There is an increasing recognition, through statute (Carney, 2015), and in the provision of formal (Clarke & Davey, 2004; Fetherstonhaugh, Tarzia, Bauer, Nay, & Beattie, 2014; Tarzia, Fetherstonhaugh, Bauer, Beattie, & Nay, 2015) and informal care (Fetherstonhaugh, Tarzia, & Nay, 2014), of the importance of decision-making to exercising one’s autonomy (Boyle, 2014), independence (Caddell & Clare, 2011) and a sense of self for people with dementia (Fetherstonhaugh, Tarzia, & Nay, 2014). Continued involvement in decision-making also improves the well-being and quality of life for people with dementia (Fetherstonhaugh, Tarzia, & Nay, 2014; Menne, Judge, & Whitlatch, 2009).

While cognitive decline and memory loss may impact on a person’s ability to make complex decisions, Sabat and Harre (1992) argue that a sense of self survives even to the end stages of dementia. There is also growing recognition that cognitive abilities for people with dementia can vary from day-to-day (Holm, 2001; Sabat, 2005; Smebye, Kirkevold, & Engedal, 2012); and that everyday decisions, which are less complex, generally involve personal values and preferences (Sabat, 2005). The literature demonstrates that people with mild to moderate dementia are able, and want, to make decisions about their own preferences (Fetherstonhaugh, Tarzia, Bauer et al., 2014; Menne & Whitlatch, 2007; Whitlatch, Piiparinen, & Feinberg, 2009). In the face of declining cognition and memory, spouse carers are in a unique position to support continued involvement of the person with dementia in decision-making, however small and trivial, because they know the person and have a history of shared experiences and values (Boyle, 2013a; Brooker, 2007; Clare, 2002). Spouse carers develop strategies to maintain some autonomy in decision-making, which are often an extension of the existing ‘couple’ relationship, characterised by love and affection, trust and respect (Ablitt, Jones, & Muers, 2009; Boyle, 2013a, 2013b; Fetherstonhaugh, Tarzia, & Nay, 2014), that ‘predates the dementia and continues to evolve as the illness progresses’ (Ablitt et al., 2009, p. 498). The concept of ‘couple-hood’ (Kaplan, 2001) has emerged as an important consideration in research exploring experiences of dementia, articulating the impact of the illness on the person with dementia and their spouse carer, and on their relationship (Evans & Lee, 2014; Hellstrom, Nolan, & Lundh, 2005, 2007; Merrick, Camic, & O’Shaughnessy, 2016; Robinson, Clare, & Evans, 2005). Relationships that value and nurture have been found to sustain a sense of self in people with dementia (Smebye & Kirkevold, 2013); and the quality of the marital relationship between a spouse carer and the person with dementia is directly linked to mutual well-being (Ablitt et al., 2009).

However, maintaining involvement in decision-making is often a difficult balancing act for spouse carers (Whitlatch & Menne, 2009), and there is a fine line between developing strategies to assist decision-making and taking over (Clare, 2002; Fetherstonhaugh, Tarzia, & Nay, 2014). The literature suggests that as cognitive decline increases, decision-making for people with dementia will involve a transition from supported or shared decision-making, to substitute decision-making by carers (Livingston et al., 2010; Samsi & Manthorpe, 2013) Often shared decision-making between a person with dementia and their spousal carer continues in a pattern that reflects a marital relationship prior to the diagnosis of dementia (Helstrom et al., 2005; Miller, Whitlatch, & Lyons, 2016). Substitute decision-making is initiated once carers have exhausted all strategies to assist decision-making for the person with dementia or to minimise risks (Berry, Apesao-Varano, & Gomez, 2015); and they then make decisions on behalf of the person with dementia using the best information available (Samsi & Manthorpe, 2013).

Aims

The study on which this paper reports was part of a developing program of research into decision-making for people with dementia living in the community (Fetherstonhaugh, Tarzia, & Nay, 2014) and in residential aged care (Fetherstonhaugh, Tarzia, Bauer, et al., 2014; Tarzia et al., 2015). Findings from an earlier study that explored the essence of decision-making when a person has a diagnosis of dementia, illustrated the importance of continued involvement in decision-making to people’s sense of identity and worth (Fetherstonhaugh, Tarzia, & Nay, 2014). The findings also offered valuable insights into how family carers supported and facilitated decision-making for people with dementia, providing the impetus for further research. Building on this previous work, the aim of the research reported in this paper was to further explore the role of family carers in supporting decision-making, in particular the strategies they develop and how they facilitate decision-making for people living with dementia in the community.

Methodology

The program of research exploring decision-making in people with dementia was informed by van Manen’s approach to phenomenology (van Manen, 1990) and involved both people with dementia and their spouse carers. Phenomenology, an interpretive methodology, aims to describe subjective orientation in the life world and the role of the research is to actively engage ‘empathetically’ with participants (Bentz & Shapiro, 1998, p. 99) to ‘mediate’ similar and different meanings of the lived experience (van Manen, 1990, p. 26).

Ethical considerations

Research involving people with dementia raises consideration of their ability to give consent to participate (Beattie, 2009; Hellstrom, Nolan, Nordenfelt, & Lundh, 2007; Holland & Kydd, 2015). While dementia is associated with gradual cognitive decline, many people with dementia are able to communicate their agreement to participate in research and engage in consent discussions (Cubit, 2010); consent from the individual should always be sought in the first instance. In this study, people with dementia were given the opportunity to provide their own informed consent, with or without involvement of their family carer (Dewing, 2007) because they had mild or moderate cognitive impairment; still had the capacity to make everyday decisions (according to their carer); and had, with their carers, responded to the invitation to participate in the research, suggesting they understood what participation involved and were happy to contribute to it. The research itself also involved minimal risk. There was a possibility that the person with dementia, or the family carer may have become upset during the dialogue, but the researchers were skilled interviewers and referral would have been made to a counsellor if necessary. Most participants with dementia gave their written informed consent with support from their family carer and written informed consent was obtained from a family carer where it was deemed by the researcher that the person with dementia was unable to give consent. To maintain the anonymity of all participants, each person was allocated a unique numerical identifier (ID) for analysis and a pseudonym for reporting. La Trobe University Human Research Ethics Committee (11/046) gave approval to undertake the study.

Participants

Purposive sampling was used to recruit 16 participants to the study, all of whom resided in Victoria, Australia. Fewer participants are required in studies that explore lived experience, as their accounts are studied in more depth (Reid, Flowers, & Larkin, 2005). Recruitment was undertaken through community organisations that provide services to people with dementia and Alzheimer’s Australia Victoria.¹ Flyers were distributed to these organisations to display and the researchers addressed community meetings to advertise the study and aid in recruitment. Potential participants were not directly approached, but could self-select their participation after hearing or reading about the study and contacted the researchers directly.

The participants included seven married couples comprising a spouse carer and a person with dementia dyad (Table 1), and two spouse carers. The nine spouse carers interviewed included six wives and three husbands, and their median age was 72.5 years (range 57–80 years). Three were still working in paid employment. Two husbands were caring for their wives (not interviewed) who have had dementia for eight and seven years, respectively. The median age of the six men and one woman with dementia interviewed was 75 years (range 56–79 years), all resided with their carer spouse at home, and the median time since diagnosis was two years (range 2–6 years).

Table 1.

Couple characteristics.

Couple^a	Jim^b and Roma	Walter^b and Helen	Jerome^b and Elizabeth	Eileen^b and Ivan	Joan^b and Nathan	David^b and Tanya	Sonia^b and Terry	Igor^b and Alice	Lachlan^b and Christine
Ages (years)	78 and 75	76 and 57	79 and 73	83 and 85	64 and 65	61 and 58	56 and 57	74 and 72	75 and 73
Diagnosis	Memory loss following stroke	Alzheimer’s Disease	Short-term memory loss following stroke	Dementia and Epilepsy	Dementia	Lewy body dementia and Parkinson’s disease	Early onset Alzheimer’s – PCA	Dementia	Alzheimer’s disease
Time since diagnosis	Six years	Two years	Two years	Eight years	Seven years	Two years	Three years	Two and half years	Two years
Relationship details	Married 56 years and have three children (one deceased) and six grandchildren	Married 11 years, second marriage for Walter. No children.	Married 20 years, second marriage for both, children from first marriages	Married over 60 years and have two children and grandchildren	Married over 40 years and have two children	Married 39 years and have three children and seven grandchildren	Married 36 years and have three children and grandchildren	Married over 50 years and have three children and grandchildren	Married 51 years and have one son

Note: ^aall names are pseudonyms; ^bperson with dementia. PCA = Posterior Cortical Atrophy

Procedures

Participants were invited to partake in a single, semi-structured interview conducted face-to-face. Couples were given the choice to be interviewed together or separately. Five couples elected to be interviewed together and two chose to be interviewed separately. The interviews were conducted face-to-face in the family home by two of the researchers (DF and LT) and took an average of 45 minutes (range 24–72 minutes). Interviewing people with dementia in a familiar setting helps to maintain comfort, which builds rapport, improves communication and maximises participant responses (Beuscher & Grando, 2009; Fetherstonhaugh, Tarzia, & Nay, 2014; Moore & Hollett, 2003).

Interviewing carers and cared-for-people who are in an intimate relationship together, such as the spouse carers and the people with dementia in this study, provide both joint and personal perspectives of the caring and dementia experience (Bjørnholt & Farstad, 2014; Eisikovits & Koren, 2010). It was important to understand the ‘couple experience’ of everyday decision-making for the person with dementia, as the literature shows that a couple’s commitment to each other in marriage influences adjustment to a diagnosis of dementia (Daniels, Lamson, & Hodgson, 2007; Davies, 2011) and that they work together to maintain ‘selfhood’ through their sense of ‘couple-hood’ (Merrick et al., 2016; Molyneaux, Bitchard, Simpson, & Murray, 2012; Wadham, Simpson, Rust, & Murray, 2016). However, when interviewing couples, consideration also needs to be given to potential difficulties that may arise during the interview and analysis such as differences in opinions and the impact of power imbalance between the couple (Forbat & Henderson, 2003).

During the interviews, family carers were asked: whether the diagnosis of dementia had affected decision-making for the person in their care; what strategies they used to assist making decisions and what difficulties they perceive for the person in continuing to make decisions in the future. People with dementia were asked what decision-making meant to them; how important it was to them to be able to make their own decisions; their experiences of decision-making since receiving a diagnosis, and the attitudes of others towards their decision-making and dementia. Participants with dementia were asked intermittently during the interview if they were happy to continue and reminded that they could withdraw at any time if they wished.

As interviews rely on cognitive and verbal functions, interviewing people with dementia can be challenging (Beattie, Daker-White, Gilliard, & Means, 2004; Bond & Corner, 2001; Lloyd, Gatherer, & Kalsy, 2006; Nygard, 2006). The participants with dementia in this study were at times difficult to interview. They were often distracted during the interview and left the room, interrupted their partner or strayed from the question asked responding with an unrelated topic (Bjørnholt & Farstad, 2014).

Analysis

The interviews were digitally audio-recorded and transcribed verbatim. To discern meaning in the transcripts (Grove, Bunning, Porter, & Olsson, 1999) an interpretive phenomenological approach was used for analysis (Smith & Shinebourne, 2012). Interpretive analyses are commonly used to examine a practical problem in the world such as the research that these findings address. Loosely based on thematic analysis, interpretative phenomenological analysis involves a progression from individual to shared experience and from description to interpretation of these experiences (Smith, 2004).

One author (JR) conducted the primary analysis (Cresswell, 2013), which was undertaken manually (Basit, 2003). Each transcript was repeatedly read and interview audio file listening to for key words or ideas. Notes, taken of key descriptive comments and phrases, as well as the use of examples by participants, were recorded separately with interpretative comments made by the researcher as to ‘what the participant was saying about his or her experience’. Changes in intonation, hesitations and repeating of words were also noted as possible signs of emotion attached to the experience described. From these notes, themes were identified and clustered into named groups to make the analysis more manageable. Direct quotes in the transcripts that illustrate the themes were identified and highlighted to be used in reporting. At this stage, a second author (DF) reviewed the themes and supporting quotes to provide additional interpretation – condensing and confirming – of the data. Connections between the themes were sought, including differences and similarities in experiences. Finally, the data were grouped into broad interpretative themes that captured the experience of decision-making for people with dementia and the role family carers play in supporting decision-making for people with dementia. Strategies used to establish rigor included checking of transcripts against recordings for transcription errors and omissions, and analysis by two (DF and JR) of the researchers (Guba & Lincoln, 1989).

Interviewing couples in this research enabled the experiences of carers to be discerned from those of people with dementia, and allowed for the identification of interpretative themes on decision-making from a couple perspective. The types of strategies used by couples together, and specifically by carers on a daily basis to support decision-making were examined in more detail; and each couple’s prior and current approach to decision-making (i.e. before and after the diagnosis of dementia) were compared (Davies, 2011). Following Boyle’s (2013a) findings, carers’ beliefs about the ability of their spouse with dementia to continue decision-making, their rationale for including or excluding them in decisions and the types of decisions still made, and assistance carers sought from others to support decision-making and autonomy in the person with dementia, were examined.

Findings and discussion

For carers, the essence of supporting and facilitating decision-making for people with dementia related to the caregiving relationship, which for all participants was longstanding and familial, and for most, intimate. This is illustrated by three interrelated broad themes: the ‘Importance of decision-making to the humanity of people with dementia’, which carers felt were facilitated by ‘Knowing the person and working together’ as they had always done, prior to the diagnosis of dementia. However, as was found in the previous study (Fetherstonhaugh, Tarzia, & Nay, 2014), spouse carers often inadvertently put their own beliefs and values before those of the person with dementia, robbing them of independence and autonomy, under the guise of risk avoidance. The final theme, ‘The Paradox of care’ illustrates how spouse carers, with the best of intentions, can act contrary to their desire to support and respect individual decision-making, by being too risk averse or allowing their own beliefs and values to override a decision made by their spouse with dementia.

The importance of decision-making to the humanity of people with dementia

Supporting their spouse with dementia to be involved in everyday decision-making was of great importance for carers because they believed it contributed to the person’s sense of self, and maintained autonomy and independence for as long as possible, especially when their life as previously lived was gradually diminishing (Menne, Kinney, & Morhardt, 2002; Whitlatch & Menne, 2009). Carers also believed that decision-making was important for people with dementia because it provided some empowerment and dignity (Menne & Whitlatch, 2007; Whitlatch & Menne, 2009). Decision-making empowered people with dementia to make individual choices, which was considered by spouse carers to be an intrinsically human attribute – being able to choose was about being a human being, being a person and being an individual. Comments from spouse carers reflect on the human aspect of choice and decision-making included:

I think it’s [decision-making] important because it’s to do with empowering and feeling you’ve still got some control over your life and I think for Joan (wife) – and it might be different for other people – I think Joan still wants to feel that she’s got some control and some say over her life (Nathan, husband/carer).

Definitely [decision-making is important]. I want him … as a person I want him to feel … for example I started off giving him money because I wanted him to feel as a person … and he lost it, every time he lost it! I would never take it away from him … How can you say, being a man? I wouldn’t do that. Even if I’ve made decisions, I put it to him. He’s got to feel important (Roma, wife/carer).

They’re still people. They’re still human. They’re still capable of making decisions. They mightn’t be the right ones sometimes, but they’re still making decisions (Tanya, wife/carer).

These comments express an emotional connection with the person with dementia, so that facilitating decision-making is part of caring for someone they love. It is the emotional connection, rather than the act of decision-making, that is foregrounded in their experiences and possibly reflects the dynamics of their relationship that has developed over many years. This was most evident in the quote from Roma above. Roma, the spouse carer of Jim who has dementia, also commented that Jim had been a ‘dynamic’ and ‘decisive’ person in his personal and professional life, who ‘in every respect made all the decisions’. While Jim seemed to accept he could no longer make major decisions, his narrative was full of a sense of resentment and frustration, because he linked his ability to make decisions to his gendered identity, commenting: ‘it’s important to me to keep making personal decisions, because I’m a man’.

Spouse carers reported that being involved in making decisions (Hellstrom et al., 2007), even about simple everyday things such as what to wear or eat, made the person with dementia feel valued and useful to others, especially those close to them (Steeman, Godderis, Gtypdonck, Del Bal, & De Casterle, 2007); it helped make them feel actively involved in the lives of their family and friends and facilitated a degree of independence.

A lot of times Igor will be happy to say ‘Well I’m wearing this today. I don’t want to wear that’. So at least he can make decisions about things like that. I think in his own way he likes to feel that he’s needed, and that he participates in a lot of things (Alice, wife/carer).

It is important not only because the person knows what is best for them. As far as decisions are concerned, if Eileen wants something I would never say no because I know it’s the right decision. It is good for her (Ivan, husband/carer).

For Jerome, a participant with dementia, being involved in decision-making was about being human:

I don’t think [being deprived of making decisions] this is good for anybody. I think … not because I’m a man but because I’m a human being I feel, deprived of a certain amount of independence (Jerome, person with dementia).

On the other hand, carers acknowledged the limitations dementia had imposed on the ability of their spouse with dementia to make decisions, particularly the inability to make important or complex decisions. Participants with dementia reported they left complex decisions to their carers, as they had lost confidence, doubted their ability or felt uncomfortable or were even fearful about decision-making.

I really wouldn’t even trust myself sometimes going to the shops. I’m a bit uncomfortable with that nowadays (Jerome, person with dementia).

Well I take a lot longer to make the decision, that’s for sure. It takes me ages to decide is this the thing I should be doing, or I shouldn’t be doing it. So it’s sort of made me doubt (Sonia, person with dementia).

Igor hasn’t got that confidence [to make decisions]. He’s become a more timid person since the dementia … it’s mainly confidence that he lacks now (Alice, wife/carer).

The couples interviewed reflected that decision-making had historically (before a diagnosis of dementia) been a shared enterprise (Hellstrom et al., 2005; Hellstrom, Nolan, & Lundh, 2007; Merrick et al., 2016), especially important or financial decisions that affected the family. Carers tried to continue this shared decision-making where possible, but this involved much more explanation and negotiation with the person, especially when disagreement arose.

We both made the decisions. Eileen and I never had any arguments about decisions. It was for us it was kind of natural, and we never had any problems with it (Ivan, husband/carer).

There’s been some heated times in this house! But I guess we just work our way through the problem. I’m the one that organises the trips, but it’s always in conjunction with Walter. I don’t like to think I impose it on Walter. I try to consult him, things aren’t being imposed on him, but rather, we say, this is what the problem or challenge is. We’ve got various options and talk through the options, and invariably we’ll end up at the same outcome which is probably would’ve done in the first place (Helen, wife/carer).

Well we’ve always been involved in everything, and neither of us would ever do anything without telling the other. It’s just the way we’ve operated. Together. Whatever we do, we’ve always talked about it (Elizabeth, wife/carer).

All of the participants with dementia reported that they trusted and respected the decisions made by their spouse, but want to still be involved in and consulted about decisions (Miller et al., 2016). They appreciated being involved in decision-making, no matter how trivial the decision or irrelevant their advice may be (Fetherstonhaugh, Tarzia, & Nay, 2014). It was the act of involving them that mattered:

Elizabeth (wife) still asks for my advice and I appreciate that. I think she’s considerate in the sense of always seeking my point of view regardless of whether she’s able to act on that. My point of view might be … not much help in some circumstances, but she always asks for it (Jerome, person with dementia)

If it’s something that involves only me, I’ll make the decision just like that without letting another person tell me what I’m going to do. But I trust Helen (wife) implicitly and I know she’s going to do, wherever we’re going, or whatever we’re going to do, will be something I’ll enjoy because I trust her (Walter, person with dementia).

There’s going to come a time now when I’m not going to be able to do it [make decisions], but Tanya (wife) knows what I want. Everything’s in her name now, and that’s exactly what I wanted. So I’ve got no worries at all (David, person with dementia).

However, for some carers, despite their attempt to involve their spouse in decisions, the burden of making all major decisions and the trust their spouse has in them, which since the diagnosis of dementia cannot be reciprocated, increases the burden of caring, as Elizabeth wife and carer to Jerome describes:

It’s difficult because I’m sharing but I’m not sharing with him. And having to suppress that irritation, you know, for heaven’s sake we talked about it yesterday! But what’s really good is I can still talk things through with him and I still value his input and what he says – that’s the important part for me. I listen to him, I wouldn’t deceive him but the trust Jerome’s got to have in me is a huge burden, even though we did trust each other before. It seems to be a really huge burden about all sorts of things. And he’s really got to rely on me. It’s like being a mother to a child, but this is my husband, my intelligent man! And the fact that he can’t make decisions about me, there’s that other aspect of it too (Elizabeth, wife/carer).

Knowing the person and working together

For carers, facilitating and supporting decision-making for their spouse with dementia often involved negotiation and communication. Much of what was said by carers about supporting decision-making in these responses included acknowledgment of a life spent together – knowing the person was paramount – understanding their current abilities, respecting their likes and dislikes and being sensitive to things that distressed them (Hyden & Nilsson, 2015). Love and respect continued despite a diagnosis of dementia, and underpinned the strategies carers developed to support continued decision-making. Carers reported respectfully consulting the person, listening to what they had to say, including them in simple decision-making, using visual aids or verbal cues, and providing them choice in decision-making, often straightforward choices between one or two things:

If Walter says he doesn’t like something or he screws up his nose and ‘Oh no that’s not me’. I’ll say ‘Ok that’s fine’ and find something that he does (Helen, wife/carer).

Generally not more than two things (to choose between). I never say, ‘Would you like cheese on toast, or that’, I’d always simplify things. And just not be hasty (Tanya, wife/carer)

[It’s about] the things that Sonia can do. We’ve got a different fridge that only has one drawer in it. That’s where we put her Cokes. Sonia used to drink cans but then she couldn’t open the cans, now I get the plastic bottles because she can still undo the top herself, so it’s a little bit of independence. The colour that she can see better is the pink, that colour stands out a little bit more. I put a pink ribbon on the fridge door handle (Terry, husband/carer).

For Lachlan, I keep it simple. So keep it simple, as simple as you can and it is probably better at some times of the day. Morning, late morning, or early afternoon. [I have found it is important] … not have to tell Lachlan too much, I say too many words sometimes and perhaps don’t get to the one point. If I said it in three words or something like that it’s easier than trying to explain it all to him (Christine, wife/carer).

They encouraged and supported the person with dementia to make decisions by making suggestions, explaining things repeatedly and finding the right time, setting or environment to enable decision-making. Comments from Helen and Alice, both carers for their husbands with dementia, provide good examples of strategies to support simple decision-making:

We went for a walk on the Sunday, not with the intention to buy anything, but it was a gorgeous day and we thought we’d go for a nice long walk and have a coffee somewhere. There’s a nice men’s store there that was having a sale. I felt Walter needed to have a couple of extra pairs of trousers, chino style things for smarter, for being out. So once I’d planted the seed in his brain we went in and got the right size. They’re his choice and his colours (Helen, wife/carer).

Igor likes to go grocery shopping occasionally but if he has a choice, like if I say, ‘Would you like to come with me?’ [he will say]‘Oh, do you really need me?’ or ‘Do I have to?’ and I’ll say, ‘Well, it might be nice just to get out of the house and have a wander around’ and sometimes if I say that he’ll say, ‘Oh, alright’ (Alice, wife/carer).

Implicit in these quotes above are instances of what Berry, Apesao-Varano, and Gomez (2015) would call ‘managed autonomy’ where carers will make suggestions or manipulate decision-making so that the person with dementia can be involved. Other examples of ‘managed autonomy’ involved the development of strategies to maintain independence but minimise risk, especially financial risk. This often involved support from others – family members, neighbours, a care network, friends and sometimes shop keepers who knew the person with dementia and could assist in maintaining their independence and dignity.

I thought it was important to Joan that she still have money in her purse that she could spend. So we went through a system whereby I reduced the amount of money in her purse each day (Nathan, husband/carer).

David pays for men’s shed and he has that in his pocket on the day, but he doesn’t have money (Tanya, wife/carer).

Every morning Jim says, ‘I’m going down to have coffee’ and I say, ‘Ok darling, you go down and have coffee’, and he gets lost sometimes but somebody will find him. All the people here know him and sometimes he’s stuck in the lift and they’ll find him and take him up another floor (Roma, wife carer).

The involvement of others to assist with strategies designed to provide independence for people with dementia had the important effect of supporting the spouse carer by removing the burden of total care and responsibility. Strategies were invariably revised as the person’s cognitive ability declined.

The paradox of care

However, the data reveal some paradoxes in the carer’s role and during some interviews a number of the participants with dementia disputed statements made by their spouse carer about ‘being free’ to make everyday decisions. Carers’ concern about safety and the mitigation of risk, meant that at times opportunity to be involved in everyday decision-making was removed from their spouse with dementia, seemingly for their own good (Berry et al., 2015; Clare, 2002; Clarke et al., 2010; Walker, Livingston, Cooper, Katona, & Kitchen, 2006).

While the study did not explicitly explore the impact of the quality of spousal relationships on support for decision-making in people with dementia, it was clear in some interviews that there were contested areas of decision-making between the couple. Jim and Roma disagreed about the amount of decision-making Jim was allowed to exercise. He complained that he was ‘not allowed to make decisions’ and when pushed a little further, Roma raised concerns about risk and safety. While she was in principle supportive of Jim being involved in everyday decision-making, she would always assess his choice, no matter how minor the decision, and override it if she thought there was a risk attached. The diagnosis of dementia has changed Jim and Roma’s roles in their relationship (Egdell, 2013). Roma commented that previously it was she ‘who was not allowed to make decisions, but now he’s done a complete about-face and he relies on me’ which he is finding difficult.

Disputes about decision-making were also illustrated in the interview with David (participant with dementia) and Tanya (spouse carer). When asked about making everyday decisions such as choosing what to wear each day, David commented that Tanya assists him by providing a few choices, but added that she also buys his clothes. Tanya responded quickly and defensively with ‘We dress to suit what we’re doing for the day’. However, exercising authority over the decisions of the person with dementia by spouse carers may reflect their continued co-construction of their ‘couple-hood’ (Hellstrom et al., 2005) or as a legacy of their past relationship (Davies & Gregory, 2007). For example, throughout their marriage, Tanya may have chosen and bought David’s clothes and this has continued and extended within her role as carer. However, previously in their interview Roma had stated Jim had ‘made all the decisions’, which suggests she has adopted a supervisory role in decision-making based on her own perceptions of risk. Adopting this supervisory role (Walker et al., 2006), other spouse carers also overruled simple decisions made by their spouse with dementia, because of perceived risks or because they felt the decision was ‘unsuitable’ – reflecting their own feelings or values. Alice, the spouse carer to Igor, mentioned that while Igor loved to eat chips, she considered it was not good for him and restricted his choice of food:

I’ll do it occasionally [allow Igor to have chips] but I feel that if we get into that habit he’ll want to have chips with every meal. As it is, he likes frankfurts and donuts and all those things that you don’t like to have too many of. If he had his way, that’s what his diet would consist of. I’ve got a funny tummy that doesn’t like fatty food, so I try to cut that down (Alice, wife/carer).

Similarly, the longevity of a marital relationship (‘knowing the person’) can raise questions about whether the carer could remain ‘stuck’ in their knowledge and memory of what their spouse liked prior to a diagnosis of dementia (Reamy, Kim, Zarit, & Whitlatch, 2013; Whitlatch et al., 2009), prohibiting any opportunity for personal change or the development of new likes and dislikes.

Conclusion

In this study, due to longstanding familial relationships, carers were committed to supporting their spouse with dementia to continue making every-day decisions, and they developed a number of strategies to facilitate this. While this study did not directly explore the quality of spousal relationships, factors such as love and respect, formed the essence of the carers’ experience of developing strategies to support continued involvement in decision-making for their spouse with dementia. The importance of relationships in dementia care and for supporting continued decision-making is noted in the literature (Boyle, 2014; Fetherstonhaugh, Tarzia, & Nay, 2014; Lewis, Hepburn, Narayan, & Kirk, 2005). Spouse carers believed that supporting involvement in decision-making was about love and respect for, and acknowledgment of, the humanity of a person they had known for many years. Due to a shared history with the person with dementia and the gradual decline in cognitive abilities associated with dementia, spouse carers developed and adjusted over time strategies to tactfully support everyday decision-making. They enlisted the assistance of others, to maintain some independence and autonomy. Spouse carers knew the person with dementia very well; they knew their likes and dislikes and how to negotiate decision-making with the person, making allowances as necessary, as they had always done. The progressive nature of dementia also allowed the participants with dementia to adjust to their declining abilities and through a loving and trusting relationship, delegate decision-making to their spouse carer.

However, disputes between couples about decision-making did arise, and it seems carers at times adopt a supervisory role in decision-making and override the decisions of their spouse with dementia, citing concerns of safety and the mitigation of risk. The issues of safety and risk, especially financial risk, raised by spouse carers in this study are also described in the literature (Boyle, 2013b; Olsson, Engstrom, Skovdahl, & Lampic, 2012). Carers described at length how they carefully weigh up the risks and benefits (Boyle, 2014; Fetherstonhaugh, Tarzia, & Nay, 2014; Menne et al., 2009) associated with the decision made by their spouse with dementia; and spoke empathically about what the person must feel when excluded from involvement in decision-making about things that concern them (Heggestad, Nortvedt, & Slettebo, 2013; Tyrrell, Genin, & Myslinki, 2006). The dyadic nature of the ‘experience’ of dementia has been cited in the literature (Davis, 2004; Hellstrom et al., 2005; Hughes, 2001) and research clearly demonstrates that the loss of personhood in dementia can be minimised by close others, especially a spouse (Cohen-Mansfield, Golander, & Arnheim, 2000; Li & Orleans, 2002). However, when managing potential risks in decision-making by people with dementia, spouse carers need to consider the nature and extent of the risks and respect all perspectives, including that of the person with dementia (Clarke et al., 2010).

Building on the findings from the previous study (Fetherstonhaugh, Tarzia, & Nay, 2014) where the essence of decision-making for people with dementia was related to feelings of not being marginalised or excluded, participants with dementia in this study expressed strongly their desire to continue making everyday decisions and acknowledged the role of their spouse in supporting this. Even if they do not have the ultimate responsibility for the decisions they make, they still want to be consulted by their spouse. Having opportunities and the support to make everyday decisions helped maintained their sense of autonomy and independence, in face of the loss of other abilities and activities.

Limitations

The findings of this study should be considered in light of the small sample size and the self-selected nature of participants, which have the potential to introduce selection and positive response biases. While recruitment was undertaken through community organisations that provide services to people with dementia, the participants were mostly white and of Anglo-Celtic heritage, not representative of the broader Australian community where one in four Australians were born overseas (ABS, 2014). In addition, interviewing couples, although a choice given to each participant, reduces the guarantee of individual anonymity and may have limited inhibited free discussion and the disclosure of information. However, couple interviews are common in family research and provide rich and dynamic data related to both the couple and individuals (Bjørnholt & Farstad, 2014, p. 4), an important consideration for this research

Despite these limitations, the findings illuminate the important role of spouse carers in supporting decision-making for people with dementia, in particular the strategies they develop to facilitate this, and adds to what is already known (Miller et al., 2016; Smeybe, Kirkevold, & Engedal, 2012). Making even simple decisions that involve personal preferences and values helps to maintain autonomy in people with dementia. Spouse carers are uniquely positioned to facilitate this because they know the person with dementia well and the strategies they use to support decision-making are motivated by ‘relationships factors’ such as love and respect, which aim to maintain the humanity of the person with dementia.

Footnotes

Authors’ note

The views in this work are the views of its authors and not necessarily those of the Australian Government.

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 DCRC-Carers and Consumers as part of the Australian Government’s Dementia Initiative.

Note

Deirdre Fetherstonhaugh is the director of the Australian Centre for Evidence Based Aged Care (ACEBAC) at La Trobe University. Her research focuses on the translation and implementation of research evidence into practice, the ethical implications of clinical practice and research, the conceptualisation and operationalisation of person-centred care, the promotion of participation in decision-making for older people with dementia and sexuality and older people.

Jo-Anne Rayner a senior research fellow at the Australian Centre for Evidence Based Aged Care (ACEBAC), a research centre of the Australian Institute for Primary Care and Ageing at La Trobe University. Her research interests include improving the health care of older people including those with dementia and understanding older people’s experiences of choice and control in health care.

Laura Tarzia is a sociologist and health care researcher. Her work has focused on aspects of decision-making, particularly for vulnerable populations. She is currently a research fellow at the Department of General Practice, The University of Melbourne.

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