Agency and Communion in People with Alzheimer’s Disease,as Described by Themselves and their Spousal Carers

Abstract

Agency (individuality) and communion (togetherness) are vital to a positive sense of self. People with Alzheimer’s disease are at risk of experiencing diminished agency and decreased communion. Their family members’, especially their partner’s, view on their agency and communion is also likely to influence their sense of agency, communion, and self. In the present study, individual interviews with 10 people with Alzheimer’s disease and their spousal carers were qualitatively analysed to describe how in each couple the two spouses viewed the agency and communion of the person with Alzheimer’s disease from an individual perspective. The findings show that the carers generally described the agency of the person with Alzheimer’s disease as slightly weaker compared with the persons with Alzheimer’s disease themselves. The carers also appeared to have poor knowledge of what supported and threatened the sense of communion of the person with Alzheimer’s disease.

Keywords

agency Alzheimer’s disease communion self spousal relationships

Introduction

Alzheimer’s disease and other dementias pose a great challenge to many people in the last years of their lives. Not only the people who are diagnosed, but also their families, are affected. Dementia entails not only memory problems, but also a range of other symptoms that affect the ability to manage activities of daily life and social interactions (Wells & Dawson, 2002). The social stigma associated with dementia and the often poor ability of society to apprehend and adjust to the needs of people with dementia further increase their difficulties (Burgener et al., 2015). However, many people with dementia have reported that they still enjoy life and find it meaningful and manageable (von Kutzleben, Schmid, Halek, Holle, & Bartholomeyczik, 2012).

Couples living with dementia

To maintain wellbeing despite their difficulties, it is important that people with dementia are supported by their closest social network, in which their spouse is often a key person. However, reviews of the research literature have shown that family carers of people with dementia report struggling with a range of difficulties (Keefe, Guberman, Fancey, Barylak, & Nahmiash, 2008) and are burdened (Etters, Goodall, & Harrison, 2008) and more exposed to health problems than non-carers (Fonareva & Oken, 2014). The marital relationship changes from one between equal partners, to one between the carer and the cared-for person. In one study, carers described losing both their partner and their marriage as the symptoms progressed (Evans & Lee, 2014). Positive aspects of care have, however, also been highlighted (Evans & Lee, 2014; Lloyd, Patterson, & Muers, 2016). In a sample of 37 family caregivers, the majority of whom were spouses to a person cared for, Peacock et al. (2010) found that caregiving was described as a chance to give back and get close to the person cared for, and to discover their own inherent strengths. Men who cared for their wives with dementia at home expressed experiences of love and communion as well as of grief and loneliness (Knutsen & Råholm, 2009). (For a recent review of the literature on gender differences among spousal caregivers, see Hong & Coogle, 2016). The quality of the previous and present relationship between the carer and the person cared for, and the motivation and the meaning that carers found in caring were associated with their wellbeing (Quinn, Clare, & Woods, 2009, 2010). Higher levels of neuropsychiatric symptoms and dependence in activities of daily living in the person with dementia were associated with decreased relationship quality, and therefore decreased wellbeing in the carers (Quinn et al., 2009). In a recent study, not focused specifically on dementia, it was found that a sense of mastery and openness to experience were positively associated with life satisfaction in spousal caregivers (Kim & Knight, 2016).

In previous research on how couples are affected when one of them has dementia, the focus has been on the perspectives of the carers (Braun et al., 2009). In recent years, however, research highlighting the perspectives of both spouses has increased (Braun et al., 2009; Prakke, 2012). In a longitudinal study, Hellström, Nolan, and Lundh (2007) interviewed people with dementia and their spousal carers over a period of 5 years. They found that the couples’ relationships went through three phases. To begin with, the couples were mutually involved in ‘sustaining couplehood’. Both made efforts to keep up normality and to nurture the relationship. As the disease progressed, the carer increasingly took over the responsibility for chores that the person with dementia had previously handled. However, the carers described it as important that their partner with dementia was allowed to participate and feel that they were still able to contribute (‘maintaining involvement’). In the third phase (‘moving on’), the carers described beginning to feel as an ‘I’ instead of a ‘we’, and putting less emphasis on the couplehood relationship. However, the three phases were often interwoven (Hellström et al., 2007).

Sense of self in dementia

The symptoms and the stigma that people with dementia experience can negatively affect their sense of self (Kitwood, 1997; Sabat & Harré, 1992) and the carers may experience a similar impact on self caused by their changed life situation (Skaalvik, Norberg, Normann, Fjelltun, & Asplund, 2016). According to Harré (1998), the self consists of three components, Selves 1–3. Self 1 is expressed by the use of first-person singular pronouns, such as ‘I’ and ‘me’. These serve to mark a singular, embodied standpoint in time and space from which people act and speak. Every person expresses one, unique, Self 1. Self 2 encompasses the perceptions that people have about themselves, their personal attributes, life views, moral views, and life stories. The third self, constituting Self 3, are the social personas, that is the manner in which people are viewed by others in various social contexts.

Selves 2 and 3, but especially Self 3, are constructed in cooperation with other people. This occurs in interactions in which people position themselves and each other in order to achieve favourable or at least acceptable social recognition (Davies & Harré, 1990). How people position themselves and are positioned will be influenced by their previously held positions and by general views that people share about various living conditions (e.g. dementia, childhood, unemployment). People with dementia are therefore likely to be positioned and position themselves according to the negative views that are commonly shared about people with dementia (Van Gorp & Vercruysse, 2011). Because positioning is done through speech and other acts that might be impaired in people with dementia, it becomes difficult for them to position themselves more favourably and enhance their social self (Sabat, Napolitano, & Fath, 2004). The negative stereotypes will influence how they view and position themselves (Scholl & Sabat, 2008).

The sense of self may also be affected in spousal carers of people with dementia, as shown in a study by Skaalvik and colleagues (2016) in which carers described that they did not recognize themselves anymore because they had to constrain their behaviour and reactions to adapt to the person with dementia (Self 2). Over time their contact with people outside the home decreased and the relationship with the person with dementia deteriorated (Self 3). However, there was also a positive impact on Self 2, in that they learned to manage chores that the person with dementia had previously handled, which gave them a sense of achievement (Skaalvik et al., 2016).

Agency and communion

Closely related to the sense of self are the constructs of agency and communion (Bakan, 1966; Hedman, Hansebo, Ternestedt, Hellström, & Norberg, 2016). Agency and communion have been defined as ‘two fundamental modalities in the existence of living forms, agency for the existence of an organism as an individual, and communion for the participation of the individual in some larger organism of which the individual is a part’ (Bakan, 1966, pp. 14–15). They have been described to be ‘the central thematic lines in the self-defining stories that adults construct to provide their lives with unity and purpose’ (McAdams, Hoffman, Mansfield, & Day, 1996, p. 341). Further, they have been described as ‘implicit dimensions of adults’ spontaneous self-representations’ (Diehl, Owen, & Youngblade, 2004, p. 13).

Thus, agency and communion are reflected in both what motivates people and what characterizes them. Bakan (1966) states that all people are motivated by both agency and communion, but that agency is more pronounced in capitalism and Protestantism (p. 16) and masculinity (p. 152). Diehl and colleagues (2004) found that agentic self-attributes were more emphasized by men and younger people, while women and older adults listed more communal self-attributes in their self-representations. A change towards increased communion in older adults has been associated with moral development (Walker & Frimer, 2015). However, Wojciszke and Bialobrzeska (2014), in a sample of predominantly younger people, found that both men and women rated themselves as more communal than agentic. The mentioned gender difference appears to be socially constructed and to be declining among younger people (Twenge, 1997). Wojciszke, Baryla, Parzuchowski, Szymkow, and Abele (2011) found that people evaluated themselves primarily based on their agentic attributes, while communal attributes were more important regarding how they evaluated others. Self-rated agentic attributes were associated with self-esteem in both individualistic and collectivistic cultures, while communal attributes contributed to self-esteem only among women in collectivistic cultures (Wojciszke & Bialobrzeska, 2014).

Both agency and communion are positively related to wellbeing (Helgeson, 1994), self-esteem (Gebauer, Wagner, Sedikides, & Neberich, 2013; Wojciszke & Bialobrzeska, 2014) and life satisfaction (Abele, 2014). However, Buchanan and Bardi (2015) found that it was important to practise agency and communion to promote wellbeing, while simply valuing them had no such effect. Further, it has been proposed that unmitigated agency or communion (an extreme focus on oneself or others) may be associated with poor health behaviours such as not seeking help when needed and not attending to one’s own needs (Helgeson & Fritz, 2000).

People with dementia are at risk of experiencing diminished agency and communion (Hedman, Hansebo, et al., 2016). Their agency is negatively affected by their cognitive impairment, for example causing difficulties in performing everyday chores and communicating with others (Jennings, 2009). The decrease in agency may be reinforced by their negative emotional reactions and decreasing self-confidence. Furthermore, there is a risk that formal and informal carers contribute to the loss of agency of the cared-for person by emphasizing their shortcomings rather than their strengths, and depriving them of opportunities to use their remaining skills (Sabat & Harré, 1992). The sense of communion may be negatively affected by the exclusion from work life as experienced by many people with younger-onset dementia, by being less able to participate in social life, leisure and conversation compared with previously, and by the stigma associated with cognitive impairment (Burgener et al., 2015; Harris & Keady, 2009; Hedman, Hansebo, et al., 2016).

In the care of people with dementia and of older people with other severe illnesses, agency and communion have been described as prerequisites for a good life and a sense of at-homeness (Saarnio, Boström, Gustavsson, & Öhlén, 2016; Zingmark, Sandman, & Norberg, 2002). Communion has been especially highlighted (Hammar, Emami, Engström, & Götell, 2011; Hansebo & Kihlgren, 2002; Norberg, 2001). A sense of communion between people with dementia and their formal carers has been described to facilitate communication and promote episodes of lucidity (Hansebo & Kihlgren, 2002; Normann, Norberg, & Asplund, 2002), facilitate co-operation with the people with dementia, define good and consoling care (Hammar et al., 2011; Norberg, 2001), and be required by the people with dementia in order to feel a sense of dignity (Tranvåg, Petersen, & Nåden, 2016). To achieve communion, it is vital for carers to tune in to the affective state of the person with dementia in their care (Norberg, 2001).

Agency and communion are therefore crucial to the sense of self and wellbeing of people with dementia. To maintain a sense of agency and communion, people with dementia are dependent on acknowledgement and support from other people. Spouses are often their main carers; however, these may not be in the best position to support them, as they are often struggling with their own feelings of grief and loss, and their changing sense of self. There is little previous knowledge about how spouses view the agency and communion of their marital partner who has dementia. Increased knowledge in this area could guide the design of future care and support of couples who are living with dementia, in order to enable them to preserve an individual and couplehood sense of self and wellbeing to the greatest possible extent.

Aim

The aim of this study was to describe, from an individual perspective, how the agency and communion of persons with Alzheimer’s disease is viewed by both the persons with Alzheimer’s themselves and their spouses.

Method

The study is part of a larger project, previously presented in several publications (Hedman, Hansebo, Ternestedt, Hellström, & Norberg, 2013; Hedman, Hansebo, et al., 2016; Hedman, Hellström, Ternestedt, Hansebo, & Norberg, 2014; Hedman, Hellström, Ternestedt, Hansebo, & Norberg, 2016).

Participants

Information about the larger project, including an invitation to participate in the project, was given to Alzheimer café attendees (Miesen & Jones, 2004). Among those who volunteered to participate were eleven couples who were living together at home. Ten of these couples were included in the present sub-study. To be included, one of the spouses had to be diagnosed with Alzheimer’s disease and both should be able to communicate in Swedish. The cognitive state of the participants with Alzheimer’s disease was assessed using the Cognitive Performance Scale (Morris et al., 1994) by the first author based on data provided by the participants.

Hereafter the participants with Alzheimer’s disease will be referred to as ‘the person/people with dementia’, and their spouses as ‘the carer(s)’. ‘The spouses’ will be used to denote the two partners in a couple. Participants’ characteristics are presented in Table 1.

Table 1.

Participants’ characteristics.

Couple		Sex	Age, years	Years since diagnosed	Cognitive state	Formal support
A	PwD	M	78	1	Moderate	Home help service
	Carer	F	74
B	PwD	F	67	5	Mild
	Carer	M	68
C	PwD	F	59	2	Moderate	Home help service
	Carer	M	58
D	PwD	M	63	2	Moderate
	Carer	F	63
E	PwD	F	63	1	Mild
	Carer	M	65
F	PwD	M	68	5	Moderate
	Carer	F	64
G	PwD	M	80	3	Moderate	Adult day care and home help service
	Carer	F	74			Adult day care and home help service
H	PwD	M	63	3	Moderate
	Carer	F	62
I	PwD	M	69	4	Moderate
	Carer	F	65
J	PwD	M	68	3	Moderate	Adult day care and home help service
	Carer	F	71			Adult day care and home help service

PwD: person with dementia.

Data collection

Individual, conversational interviews were conducted with all participants. They were asked to talk about themselves and their families in the past, present and future and about the impact of Alzheimer’s disease on themselves and their lives. The mean length of interviews was 34 (range 20–51) minutes for the people with dementia and 44 (range 17–60) minutes for the carers. All except two couples were interviewed in their homes. The remaining interviews were conducted at the interviewer’s workplace or the participant’s adult day care centre. The interviews with the people with dementia have been previously included in a study on how people with Alzheimer’s disease express their sense of self (Hedman et al., 2013).

Analysis

The data were analysed with qualitative content analysis (Graneheim & Lundman, 2004). The interviews were transcribed verbatim and read several times to get an impression of the whole. The parts in which a participant spoke about the person with dementia were then highlighted in the text and extracted. The extracted texts were divided into meaning units, condensed, and coded for agency and communion in the past (before the debut of Alzheimer’s disease), the present, and the future. To be able to compare the views of the spouses of each couple, a matrix was constructed (Table 2). For each person, a short summary of the content concerning each area (agency and communion in the past, present, and future) was made and put in the matrix along with the interpreted meaning (in bold) of the content.

Table 2.

Example from the analysis matrix.

		Summarized expressions of communion (interpretations in bold)			Summarized expressions of agency (interpretations in bold)
Couple		In the past	At present	In the future	In the past	At present	In the future
E	PwD		She is self-sufficient. Selective communion		She was always stressed – she felt a compulsion to be good at everything, and always wanted to be involved with many things. Strong agency	Things have become increasingly difficult and she has become slower and slower, but she has devised compensatory strategies and she does not cancel. Managing though struggling
	Carer	She has always been reserved. But she had a large social network. Mixed communion	She isn’t up to socializing. She has always been reserved, but now more so than ever. Her golf buddies are not being supportive. Decreasing communion			She spends a lot of time looking for things. She becomes sad when mistakes are pointed out. She cannot deal with stress. Things work. She has no real interests. Mixed agency
G	PwD	He had an active social life. Strong communion	The marital relationship is deteriorating. He feels marginalized. Decreasing communion	He is experiencing a growing feeling of isolation. Decreasing communion	He used to have a vibrant life. Strong agency	He often hallucinates. He is forgetful and his speech is deteriorating. He would like to walk. Also, he is unable to manage golf. He is pushing to improve his adult day care, without success. Failing agency
	Carer	He used to be good-natured, friendly, and well liked. He loved to spend time with the children and grandchildren. Strong communion	He is friendly, good-natured, well liked and amiable. He does not trust his wife’s memory, and is a terrible passenger. Challenged communion		He used to be an amazing driver. Strong agency	He is unable to tell about his day at the day care centre. He finds it tedious. He feels inferior. He is grieving for his loss of faculties. It is going downhill. Failing agency

PwD: person with dementia.

Ethical considerations

The couples received written and oral information about the purpose and procedures of the study. They were informed that participation was voluntary and that they were entitled to withdraw from the study without stating a reason, at any point previous to the start of the analysis of the data, should they regret having given their consent. Participants were ensured that the data would be confidentially handled and anonymously presented. Written informed consent was obtained from all participants. Ethical approval was sought in accordance with the Swedish Act concerning the ethical review of research involving humans (SFS 2003:460), and granted by the Regional Ethics Committee (2008/913-31/4).

Findings

Overall, the spouses of each couple spoke relatively consistently about the agency and communion of the person with dementia. Differences consisted mainly in what they emphasized and downplayed. Concerning agency, the people with dementia generally emphasized their agency more than their carers did. With regard to communion, the spouses’ views were more disparate and the carers appeared to have poor knowledge of how the person with dementia experienced communion. In the following, the spouses’ narratives of the people with dementia’s agency and communion in the past, present, and future will be summarized and illustrated with quotations.

Agency in the past

All people with dementia said that they had had strong agency in the past. The strong agency was commonly described by the person with dementia in narratives about past achievements at work. Most carers also described the people with dementia as highly agentic in the past. However, some carers did not speak about agency in the past, and some described incidents of weakness that the person with dementia had lived through in the past.

Agency at present

When speaking about the agency of the people with dementia in the present time, both spouses gave a more nuanced picture, with several qualities and degrees of agency (Table 3).

Table 3.

Qualities of the agency of the persons with dementia at present, as described by themselves and the carers.

Qualities of agency in the present time, as described by the people with dementia	Qualities of the agency of the persons with dementia in the present time, as described by the carers
Strong agency
Ability to manage
Mixed (abilities and inabilities)	Mixed (abilities and inabilities)
Failing agency	Failing agency
	Lack of insight

The people with dementia expressed their agency as strong, with no or very little change compared with before the debut of Alzheimer’s disease. Some said they were as able as previously to manage despite difficulties; others admitted to mixed agency, having both difficulties and abilities, or even to having poor or failing agency. Poor and failing agency was typically expressed in stories about chores and activities that the people with dementia said that they were losing their ability to manage or were no longer allowed to perform (e.g. driving). None of the carers described the agency of the people with dementia as strong. The carers described the people with dementia as having both abilities and inabilities, as having poor or failing agency, and as being unaware of the extent of their inabilities (Table 3). While carers kept to listing tasks that the person with dementia in their care was able and unable to manage, the people with dementia themselves usually emphasized their efforts and progress in managing their situation:

When she wants to cook, which she’s always been good at and still is … but now she has to read the recipe and … stand there and measure out the ingredients – yeah, there are so many small things like that that … you see them constantly. That used to be, you know, clear as day. (carer, couple E)

You start to develop strategies … and I've had that for a long time, also when I was burnt out, because memory is like that, and whenever I wanted to prepare food or bake something, and I’d get out all the ingredients and arrange them in the order in which they were to be used … and I try to do that now, too … but it often happens that there’s something that ends up being forgotten on the counter, like, I’m … when … didn’t even think to look, but it just … The other day I made apple cake, put it in the oven … then went to have a look at the counter … discovered the flour sitting there measured out in the measuring cup, then I poured it over everything, put it back, and stirred [inaudible] nothing wrong with the taste … but so, things like that happen a lot when I'm preparing food and it’s, I mean … And it’s a pain, even though of course I do like to cook, get out all kinds of ingredients, and chop everything, and then you have to place everything in the proper order, and then read the recipe a hundred times just so that … what the order is and how long it has to cook, and so on … But I still do enjoy cooking. (person with dementia, couple E)

The persons with dementia often described a process of struggling and learning (i.e. a sense of personal growth) that did not appear to be fully acknowledged by the carers.

Agency in the future

All participants spoke about the agency of the people with dementia in the present time, but not all, especially not all carers, mentioned the future. While the persons with dementia sometimes expressed hope for recovery or for keeping their abilities, the carers spoke only about deterioration (Table 4).

Table 4.

Qualities of the agency of the persons with dementia in the future, as described by themselves and the carers.

Qualities of agency in the future, as described by the people with dementia	Qualities of the agency of the persons with dementia in the future, as described by the carers
Hope of recovery
Ability to manage
Deterioration due to age
Deterioration, manageable/inevitable	Deterioration, manageable
Deterioration, threatening/unpredictable	Deterioration, threatening

The people with dementia expressed awareness of the probable course of their condition; however, they said that they hoped to retain as much as possible of their agency as long as possible. Some said they hoped for medical innovations that would cure or improve their condition. People with dementia who expected their agency to diminish in the future spoke of this in various ways. One of the oldest persons in the group said that decreasing abilities were natural at his age. More commonly, however, the people with dementia expected their abilities to decrease as a result of their condition. Some people with dementia spoke about decreasing agency as manageable and inevitable:

I don’t worry about that – I don’t think [about it] any more. That day … I just take it one day at a time. And the day I have to go into a home, that’s the way it will have to be, and that’s how it is. And I know that’s the way it is, that’s what will happen one day. But … yes, that's the way it will have to be. (person with dementia, couple C)

Others spoke about it as unpredictable and threatening:

You can just keep it at bay for a while, but it's not going to go away … I don’t think. Not today at any rate … […] You have to wait and see if something happens and … if something doesn't work today …. (person with dementia, couple D)

I have to have something to do […]. You get more and more isolated, I find, because then, I might be able to … [pause] … of course, you wonder how things are going to be from here on. (person with dementia, couple G)

The same pattern, of a manageable versus threatening decrease in the future, was found among the carers (Table 4).

Communion in the past

The people with dementia generally said they had had strong communion in the past, as they described in narratives about their roots and their families, for example. Few carers spoke about the past communion of the people with dementia; those who did, however, were relatively consistent with the people with dementia.

Communion at present

The views of the spouses concerning the present communion of the persons with dementia appeared to be more disparate than their views on present agency. While the people with dementia generally emphasized their agency more than their carers did (see Table 3), the views on communion were more varied (see Table 5). In some couples, the person with dementia expressed strong communion while the carer spoke about fragile or weak communion.

My son’s grown up, so he can take care of himself. And of course we’re in touch with each other, and he lives in this area, too, nowadays … not where I live but at the other end, you might say. And he has a family – he has children. (strong communion; person with dementia, couple B)

Table 5.

Qualities of the communion in persons with dementia at present, as described by themselves and their carers.

Qualities of communion in the present time, as described by the people with dementia	Qualities of the people with dementia’s communion in the present time, as described by the carers
Strong	Strong
Fragile	Fragile
Decreasing	Decreasing/weak
Selective	Mixed (strong and weak)

X does have two boys, but one lives in [another part of Sweden]. And she has three grandchildren down there, and she's got a boy in [nearby], too. But I don’t think they talk to each other nearly as much as they should. (weak communion; carer, couple B)

In other couples the opposite was seen:

Yes, you certainly become more and more isolated – I find that. (person with dementia, couple G)

But he’s such an incredibly friendly and cheerful person, you know. A well-liked and congenial gentleman, so I think it’s nice when he goes to the daytime activities, that they like him. (carer, couple G)

Yet in other couples, the spouses’ narratives concerning the communion of the person with dementia were in agreement. Both the people with dementia and the carers described the present communion of the persons with dementia as strong but fragile, and decreasing (the carers also described it as weak). Some people with dementia also reported that they had deliberately chosen to limit their social network because of lacking energy (labelled “selective” communion; Table 5).

There were discrepancies among some couples concerning what threatened the person with dementia’s sense of communion. For example, in one instance the person with dementia described that the neighbours ignored her:

It’s often now when we’re out for a walk, the girls [the home care staff] and I. It’s like they only turn to … you know what I mean? Like my neighbour… If we're going for a walk and we stop and chat with our neighbour. Then they talk … I mean the girls and the neighbour talk, but no-one ever talks to me. [laughs][…] No-one ever says, ‘How’re you doing?’ or anything … that’s how it is … (person with dementia, couple C)

The carer in that couple, by contrast, described the neighbours as supportive and caring:

There are people who live close by, whom we know, so that when X is walking along she’ll run into the farmers who live here and chat with them …. […] You see the difference. I have grown up in the city, and so on, a whole different … people care about each other here. And people never walk past each other without stopping and exchanging a few words. (carer, couple C)

While several of the carers expressed concerns about the people with dementia being included or excluded in specialist care, the people with dementia more commonly spoke about social inclusion and exclusion. The people with dementia commonly described their marriage as a source of communion, while the carers markedly described tensions in their relationship.

Communion in the future

Very few participants spoke about the future communion for the people with dementia. One person with dementia expressed fear of being increasingly socially excluded. A carer from another couple described being worried about possible future exclusion from specialist care.

Discussion

When the couples’ views on the agency and communion of the persons with dementia were compared, an interesting pattern was found. The people with dementia generally described their agency as stronger than the carers did. This is consistent with previous research. For example, Miller, Brown, Mitchell, and Williamson (2013) found that older people with cognitive impairment scored their need for assistance with activities of daily living lower than did their family carers. However, when it came to communion, the views of the carers seemed to be unrelated to the views of the persons with dementia and the two spouses emphasized different sources of communion. While the people with dementia spoke about being, or fearing to become, socially excluded, the carers spoke about exclusion from care. One possible explanation for this disparity may be that the carers were expressing their own concerns about being abandoned by the society in their role as carers, rather than speaking on behalf of the people with dementia. For example, when one of the couples disagreed about whether their neighbours contributed to a sense of communion or not, the carer may have described his own relief at knowing that the neighbours were watching over his wife. He might not have been aware of how their behaviour towards her impacted on her sense of communion.

The pressure and the lack of support that carers of people with dementia experience are well described in the literature (e.g. Etters et al., 2008; Keefe et al., 2008). It has also been reported that carers of people with dementia experience stigma and social exclusion, similar to the persons with dementia themselves (Werner & Heinik, 2008). Therefore, it is not unlikely that the carers in the present study were speaking partly from their own experiences and failed to fully recognize the lack of communion experienced by the persons with dementia. There is a risk that carers who themselves experience a lack of communion are less able to support the communion of their partner with dementia.

Although the differing views on the degree of agency in the people with dementia were expected, it was interesting to see that there was also a difference in how the spouses described manifestations of agency. While the carers simply listed abilities and inabilities, the persons with dementia described their efforts and learning process. This sense of growth, which was seemingly not acknowledged by the carers, may explain why the people with dementia were more positive about their agency compared with their carers. The people with dementia were also more explicit about their agency in the past than were the carers. This is in accordance with previous research, showing that past abilities contribute significantly to the sense of self of people with dementia (Hedman et al., 2013; Sabat, Fath, Moghaddam, & Harré, 1999). There is a risk that carers are so concerned with their present difficulties that they pay less attention to the past and currently remaining competencies of the people with dementia, and that they even deem past abilities irrelevant when the current state is described. Furthermore, they are often not aware of how this negatively affects the sense of self in the person with dementia. The focus on inabilities might also be reinforced by the professional care, which is strongly focused on evaluating the progression of symptoms.

Yet another difference between the people with dementia and the carers concerned the future agency of the people with dementia. While the carers only anticipated further deterioration, the people with dementia also expressed hope that they would remain able to manage and even increase their agency. Although the carers’ view undeniably appears to be more realistic, it is important to bear in mind that hope is vital for people to maintain a positive sense of self and wellbeing (Cotter, 2009; Wolverson, Clarke, & Moniz-Cook, 2010). Finding a balance between making realistic and necessary preparations for the future and simultaneously nurturing hope is likely to be a delicate challenge for the couples. Previous research has shown that couples living with dementia often avoid speaking about the future (Hellström & Torres, 2016). However, researchers have increasingly highlighted the benefits of advance planning for families living with dementia (see, e.g., Brummel-Smith & Halperin, 2013; Hilgeman et al., 2014). The future agency, just as the past and present, contributes to the sense of self. There is an obvious risk that advance planning, by focusing on a future loss of agency, negatively affects the sense of self. On the other hand, it might also provide the carer and the person with dementia with a sense of exercising agency in advance and in fact contribute positively to a sense of agency and self.

Previous research has shown that unmitigated agency and communion (i.e. an excessive focus on self or others) may negatively impact health behaviours (Helgeson & Fritz, 2000). In the present research, no expressions of unmitigated agency or communion from any of the spouses were found.

Methodological considerations

Socio-culturally, the participants of the present study constituted a relatively homogeneous sample: all were born in Sweden, except one spouse who was from another Nordic country. The couples participated regularly in the Alzheimer’s café from which they had been recruited, as well as in other activities that support people with dementia and their families. Consequently, it may be that the couples were more in agreement on the agency and communion of the people with dementia than less engaged couples would have been. It is also likely that participants with more socio-culturally diverse backgrounds would have added further dimensions to the findings.

Implications for care

The study highlights that proxy informants, even as close to persons with dementia as the carers were in the present study, can never fully account for the experiences of the persons with dementia. Where possible, persons with dementia should always be asked themselves about how they experience their situation. The sense of agency and communion needs to be supported in both people with dementia and their carers, to strengthen their sense of self and wellbeing. In the people with dementia, agency can be strengthened by focusing not on their deficits, but rather on what they can manage and what they have learned. It must also be acknowledged by formal and informal carers that agency in the past may be vital to the sense of self in people with dementia. For persons with dementia to maintain a sense of communion, it is crucial to support their social inclusion and involvement in decision making. As found in this study, it is also important, especially to the carers, that they are ensured of having access to professional care and support when needed.

Footnotes

Acknowledgements

The authors are deeply grateful to the couples who so generously shared their experiences. The authors would also like to thank the staff and volunteers at Ersta Diakoni who made this project possible.

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: The Oscar and Maria Ekman Foundation, Ersta Diakoni, The Dementia Association – The National Association for the Rights of the Demented, The Swedish Order of St John, and the Erling-Persson Family Foundation contributed financially to the study.

Ragnhild Hedman, RNT, PhD is a lecturer at Ersta Sköndal Bräcke University College, Stockholm, Sweden. Her main research interest is in how people with dementia experience sense of self.

Astrid Norberg, RN, PhD, professor emerita, has mainly performed research on people with dementia and stress of conscience.

Ingrid Hellström, RN, associate professor, has a background in clinical gerontological nursing, especially in the care of persons with dementia. Her main research interest is people living with dementia and their families, especially couples living with dementia at home.

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