Expressed Sense of Self by People With Alzheimer’s Disease in a Support Group Interpreted in Terms of Agency and Communion

Abstract

The self is constructed in cooperation with other people and social context influences how people perceive and express it. People with Alzheimer’s disease (AD) often receive insufficient support in constructing their preferred selves, but little is known about how they express themselves together with other people with AD. In accordance with Harré’s social constructionist theory of self, this study aimed to describe how five people with mild and moderate AD express their Self 2 (i.e., their personal attributes and life histories) in a support group with a facilitator experienced in communicating with people with AD. The participants’ expressions of their Self 2 were analyzed with qualitative abductive content analysis and interpreted in terms of agency and communion and a lack of agency and communion. The findings highlight the importance of supporting a sense of agency and communion when assisting people with AD in constructing their self.

Keywords

self Alzheimer’s disease agency communion support group

The self is constructed in cooperation with other people (e.g., Sabat & Harré, 1992). People with Alzheimer’s disease (AD) and other dementias (DD) are often positioned negatively by others, which undermines their wellbeing (O’Sullivan, Hocking, & Spence, 2013) and sense of self (e.g., Harris & Sterin, 1999; Kitwood, 1997; Sabat, 2003). They frequently experience that people avoid them because of their diagnosis (Batsch, Mittelman, & Alzheimer’s Disease International, 2012), and withdraw themselves related to language impairments (Potkins et al., 2003; Sabat, 2002) and embarrassment (Husband, 2000). When appropriately supported, people with AD expressed maintained sense of self (Sabat, 2002). Supportive communication included, for example, allowing time to understand and formulate answers, assisting word finding (Perkins, Whitworth, & Lesser, 1998), eliminating distractions, and using simple sentences (Small, Gutman, Makela, & Hillhouse, 2003).

The concepts of self, selfhood, personhood, and identity have often been used interchangeably (Caddell & Clare, 2010; Vignoles, Schwartz, & Luyckx, 2011). For the present purpose, we have chosen to view them as synonymous and to use the term “self” unless referring to authors using other terms. We have adopted Harré’s (1998) social constructionist theory of self, viewing self as linguistic expressions designating embodied people. The embodied nature of selfhood has also been commendably highlighted by Kontos (2004). According to Harré, there are three modes of self: Selves 1-3. Self 1 is the expression of being a singular person with a unique, embodied viewpoint, articulated in the use of first person indexicals. Self 2 is the expression of possessing certain personal attributes (e.g., traits, skills, and beliefs), including beliefs about those attributes, and having personal experiences (a life history). Self 3 is the publicly expressed Self 2, the social personae. While Self 1 is singular, Selves 2 and 3 are multiple and constantly reconstructed in the interplay among people (Harré, 1998).

People with AD were able to express Self 1 (Fazio & Mitchell, 2009), even in the late stages of the disease (Tappen, Williams, Fishman, & Touhy, 1999). The altered attributes and new experiences with AD were processed and included in the construction of Self 2 ( Caddell & Clare, 2011; Hedman, Hansebo, Ternestedt, Hellström, & Norberg, 2013; Sabat, 2002). Self 3 was especially vulnerable due to negative positioning (Sabat, 2003). With a lack of cooperation from other people, the construction of positive social personae became difficult.

The construction of self in people with AD has primarily been studied in conversations between a person without and one with AD (e.g., Saunders, de Medeiros, & Bartell, 2011; Westius, Kallenberg, & Norberg, 2010). It is becoming increasingly common to administer support to people with DD in the form of group activities (Burgener, Buettner, Beattie, & Rose, 2009; Logsdon et al., 2010). At town hall meetings arranged by the American Alzheimer’s Association (Reed & Bluethmann, 2008), people with early-stage AD emphasized the importance of support groups to enhance their quality of life and opportunities to connect with others. “Support group” has various meanings. Toseland (1995) and Yale (1995) described support groups primarily focused on mutual support and topics suggested by the participants. Beattie and Colleagues (2007) found that support groups commonly combined mutual support and educational programs. There were also groups termed differently, which were very similar to the support groups described by, for example, Yale (1995), “self-help group” (e.g., Örulv, 2012); “psychotherapy group” (e.g., Åkerlund & Norberg, 1986); and “validation therapy group” (e.g., Bleathman & Morton, 1992). User-led groups facilitated by participants have been described (Örulv, 2012; Pratt, Clare, & Aggarwal, 2005). More commonly, however, the importance of having group facilitators able to assist participants’ communication has been emphasized (Goldfein, 2007; Mason, Clare, & Pistrang, 2005; Yale, 1995).

Most studies concerning support groups have focused on assessing outcomes (e.g., Gaugler et al., 2011; Logsdon et al., 2010; Quayhagen et al., 2000; Snyder, Jenkins, & Joosten, 2007; Zarit, Femia, Watson, Rice-Oeschger, & Kakos, 2004). Fewer studies, some of which were anecdotal, described support group conversations in which self-disclosure was commonly occurring (Mason et al., 2005). Participants shared life accounts concerning happy memories, loss, grief, love, marriage, friendship, and conflicts (Åkerlund & Norberg, 1986; Bleathman & Morton, 1992). They also spoke of altered Self 2 attributes, such as memory and language difficulties, and how they were able to cope (e.g., LaBarge & Trtanj, 1995; Offord, Hardy, Lamers, & Bergin, 2006; Örulv, 2012; Pratt et al., 2005). The difficulties discussed in the support groups were not solely about symptoms, but also about unsupportive reactions from others (e.g., Jones, Cheston, & Gilliard, 2002; Morhardt, Sherrell, & Gross, 2003; Örulv, 2012; Yale, 1995, pp. 208-210). Participants described experiencing stigma, strained family relationships, friends disappearing (Yale, 1995, pp. 208-210), being forgotten (Jones et al., 2002), and their difficulties being trivialized, dismissed, and not accounted for by others (Örulv, 2012). They described struggling to minimize marginalization and preserve a sense of belonging and control (Morhardt et al., 2003). A supporting group or network was found to facilitate acceptance of the AD diagnosis (Snyder et al., 2007), form a collective identity among participants (Beard & Fox, 2008; Örulv, 2012), and strengthen their personal sense of self (Jones et al., 2002; LaBarge & Trtanj, 1995).

Although studies provide some insights on how people with AD express self together with other people with AD, our aim was to explore this issue in more depth by applying a theory of self in the analysis. The purpose of this study is thus to describe, in accordance with Harré’s theory of self, how people with AD express their Self 2, that is, their personal attributes and life histories, in a support group with other people with AD and with a facilitator experienced in communicating with people with AD.

Method

The present study is part of a larger project providing self-promoting support groups to people with AD and their family members. Participants were invited via an Alzheimer café, inspired by Miesen and Jones (2004). Inclusion criteria were as follows: having AD (according to themselves and a close family member) and being cognitively able to participate in support groups (as judged by the project managers by personal contact). For all participants, their close family member reported that they had been prescribed cholinesterase inhibitors, which strengthened the likelihood that they had, in fact, been diagnosed with AD. At the inclusion and end of the project, participants’ cognitive states were assessed by the first author with the Cognitive Performance Scale (CPS; Morris et al., 1994). The CPS does not require testing, in which people might experience failure that could harm their sense of self (Hellström, Nolan, Nordenfelt, & Lundh, 2007). It is based instead on the observed abilities to recall recent memories, communicate, eat, and make decisions in daily life. The outcome scores range from 0 (intact) to 6 (very severe impairment). The CPS items are part of the Resident Assessment Instrument, in which 76.1% of the items had an adequate or excellent inter-rater reliability in Sweden (Sgadari et al., 1997). The CPS was modeled after two standard tools for cognitive assessment (Morris et al., 1994), the Test for Severe Impairment (TSI; Albert & Cohen, 1992), and the Mini-Mental State Examination (MMSE; Folstein, Folstein, & McHugh, 1975). Compared with the MMSE, both the sensitivity and specificity measures for the CPS were .94 and the diagnostic accuracy was .96 measured as the area under the receiver operating characteristics (ROC) curve. The correlation between CPS and MMSE was r = −.863 (p < .001), as measured by the Spearman correlation coefficient (Hartmaier et al., 1995).

Participants

One of the support groups, consisting of five people with AD, was selected because its participants gave rich and diverse expressions of self. Three participants were female and two male, between the ages of 59 and 78 (median = 65). Three had secondary-level education, and two had academic degrees. Four were cohabiting and one was single. Participants had been diagnosed with AD for 1 to10 years (median = 2). One had mild (CPS = 2), and four moderate (CPS = 3) cognitive impairment. At the end of the data collection, one participant had gone from mild to moderate cognitive impairment. Three remained in a moderate stage, and one could not be assessed, due to illness other than AD.

Data Collection

The support group met 10 times during an 8-month period. Each session lasted 1 hr and was audio-recorded, resulting in a total of 10 hr of recorded conversations. To optimize participants’ use of their remaining abilities (Sabat, 2001; Sabat & Harré, 1992), efforts were made to create a safe and warm atmosphere. Participants arrived with a family member who attended a parallel group. The sessions were facilitated by an enrolled nurse who had several years of experience in communicating with people with AD in a day care center, working according to the validation method (Feil, 1992; Söderlund, Norberg, & Hansebo, 2012), a method of communicating by relating to emotional expressions. She had received information on self according to Harré’s (1998) theory and on expressions of self in AD, and received supervision on five occasions during the project by the last author. Her tasks were to open and close the group sessions, encourage participants to raise topics, support expressions of self, invite participants into the conversation, and assist them in overcoming communicational difficulties. The first author assisted the facilitator. Most of the topics were initiated by participants, and some by the facilitator.

Data Analysis

An abductive approach was used in the analysis. Abduction includes combined inductive and deductive reasoning (Peirce, 1955, pp. 150-156; Råholm, 2010). The transcripts were read several times to get an overall view. Participants’ expressions of Self 2 were then marked as meaning units and condensed. The condensed meaning units were compared and discussed among the authors. Because the expressions of Self 2 seemed to concern participants’ experiences of managing life and relating to others, the concepts of agency and communion (Bakan, 1966), as further elaborated by McAdams and Colleagues (e.g., McAdams, 1988; McAdams et al., 2006; McAdams, Hoffman, Mansfield, & Day, 1996), were regarded as a plausible means to interpret them. According to Bakan (1966, pp. 1-15), agency (the need to manifest oneself as autonomous) and communion (the need to connect to other people) are basic poles in human existence, and the major motivational forces in people’s lives. McAdams constructed positive (McAdams et al., 2006; McAdams et al., 1996) and negative (McAdams, 1988, pp. 158-159) themes of agency and communion that characterized life stories (Table 1). Although McAdams referred to “themes,” in our analysis, we chose to view them as “categories,” due to their mutually exclusive character (Graneheim & Lundman, 2004; Morse, 2008). Each category will be further explained in Findings.

Table 1.

Themes of Agency and Communion (McAdams, 1988; McAdams et al., 2006).

	Agency themes	Communion themes
Positive themes	Self-mastery	Love/friendship
	Status/victory	Dialogue
	Achievement/responsibility	Caring/help
	Power/impact	Unity/togetherness
Negative themes	Failure/weakness	Separation
	Losing face	Rejection
	Ignorance	Disillusionment about people
	Conflict	Another’s misfortune

All meaning units were sorted into categories. According to McAdams and Colleagues (1996), only explicit expressions should be referred to the themes (labeled categories in our study). In the present data, much of the meaning was implicit. Considering participants’ communicational impairments and the limited options for probing in a group, this was not surprising. We thus decided to include implicit expressions. To enhance credibility (Graneheim & Lundman, 2004), all authors individually and together examined the initial categorization, made by the first author. Alternative views were discussed until consensus was reached about the most plausible interpretations. It was ensured that the coding scheme covered all meaning units.

Ethical Considerations

Written informed consent was obtained. Participants were informed that participation was voluntary and that they had the right to withdraw without giving a reason before the data analysis. Confidentiality and anonymous presentation of findings were guaranteed. As mentioned, efforts were made to support participants’ abilities and avoid harming their sense of self. When necessary, the facilitator or researcher repeated the information and made sure that participants still consented. The study was approved by the Regional Ethics Committee (2008/913-31/4).

Findings

Participants gave rich expressions of Self 2 in accounts of themselves and their attributes. Some accounts were told repeatedly, and thus seemed to play a central role in how participants perceived themselves as people and wished others to perceive them. Participants’ expressions of Self 2 were interpreted in terms of agency and communion, and a lack of agency and communion. In the following, some quotes have been shortened. “()” marks words or sentences left out and “ . . . ” marks short pauses.

Agency and Lack of Agency

The accounts of agency were set in the past, present, and future. Agency in the past especially concerned experiences of having mastered work successfully and with moral integrity. In the present, agency mainly concerned striving and succeeding in mastering the consequences of AD. In the future, participants hoped to preserve agency as long as possible. The accounts of lack of agency mainly concerned situations in the present in which AD caused participants to perceive a lack of agency. They also concerned uncertainty about how AD might progress, and fear of more severe agency loss in the future.

Self-mastery means that a person “strives successfully to master, control, enlarge, or perfect a self that has already attained some measure of autonomy” (McAdams et al., 1996, p. 346). Here, self-mastery concerned struggling to manage everyday life, knowing one’s limitations, and preserving personal autonomy. Participants described their past and present abilities. They said they could mostly still manage, but had ceased doing some things. Rather than struggling with impossible tasks, they focused on what they could still do. Sometimes they managed with the assistance of other people, extra effort, and other strategies:

I have . . . stressed out my brain so much that I have huge problems with my memory and with stuff I didn’t used to have the slightest problem with. () That’s when you have to get assistance. This [notebook] is my memory now—I always have it with me.

Having realized that something was wrong when the symptoms of AD appeared, participants had acted to find out the cause. They stressed the importance of gaining knowledge about AD to best be able to sustain their health. They also considered it important to be allowed to decide for themselves in personal matters, for example, participating in grocery shopping.

Status/victory means when people “strive to attain heightened status, position, or prestige” (McAdams et al., 1996, p. 347) typically in competition with others. Here, status/victory concerned episodes when participants described experienced status or prestige. One participant described an experience of triumph, after lecturing to a large audience:

It actually went really well (); they came and gave me a hug and: “well done” (). It was actually really good fun (). I’m boasting now, but it was really good. () It was professional, you know all those old Swedish guys, they sat there with their notes, but I just waltzed in.

In spite of her lack of experience, she had succeeded and done better than more experienced lecturers. Other participants described feeling prestige when driving a big car, exhibiting art in prestigious places, and overcoming resistance when managing projects at work.

Achievement/responsibility “manifests itself in reports of substantial success in the achievement of tasks, jobs or instrumental goals, or in the assumption of important responsibilities” (McAdams et al., 1996, p. 348). Here, this concerned achievements and responsibility in participants’ professional lives, their retirement, and experience with AD. In particular, participants described achievements and responsibilities at work:

When you work as a teacher at school (), it’s really stressful. But it didn’t bother me. I tried to find other things (), reflect—that boy is usually like that, and that girl like that (). Eventually you see a pattern to them. And in the end it went really well.

They expressed pride in what they had accomplished and in their moral standpoints. They also spoke about how they had continued to contribute, by participating in research on AD, for example. The importance of taking responsibility for one’s own health was also underlined.

Power/impact (McAdams et al., 2006; in earlier works called “empowerment”) means that the person “is enlarged, enhanced, empowered, ennobled, built up, or made better through his/her association with an especially powerful source, such as God, nature, the universe, or some highly charismatic or inspiring figure” (McAdams et al., 1996, p. 348). Here, one participant described how her mother had always empowered her:

I’m like my mum—she was always really happy and alert and everything was so much fun (). Everything was simple. I’ve experienced a simple period. I do the same thing.

Other participants described empowerment by having an appreciative employer, religious faith, teachers, and belonging to a group of stimulating people.

Failure/weakness means that “the person is unable to do something that he or she wants to do because of some factor(s) within him or her” (McAdams, 1988, p.158). Here, this concerned the experience of losing abilities, dreading the future, and being unable to improve health. Participants sometimes used humor to manage difficult feelings:

What I think is difficult is that you can’t see very well and you can’t read (). But your beauty remains ()! You can have a joke.

Participants described losing the ability to see, write, count, paint, drive, tinker with cars, put on makeup, dress, work, travel, and keep up with politics. This made them feel strange to themselves:

Handwriting (). When I get to another letter I can’t form it. Strange (). It doesn’t look like it used to.

The loss of abilities made life less fun and it was difficult to keep occupied, making participants feel marginalized. It was frustrating to need help with previously simple tasks such as dressing. Participants said they feared becoming even more helpless in the future.

Losing face means “shame (though not necessarily guilt), embarrassment, or humiliation in the presence of others” (McAdams, 1988, p. 158). Participants described struggling to conceal their memory problems from others:

It’s not obvious from the look of you that you’re . . . (). And you learn how to behave so that it’s not noticeable. () You just have to try to recall what you have . . . what you had before, take it easy and give something that has stuck with you from before (). Highlight that, not like here, talking in plain language.

They mentioned situations when their difficulties had become obvious in public, for example, suddenly not being able to count money when shopping. One participant expressed embarrassment over not being able to care for her appearance as before. Another participant said she had been advised by a senior family member not to tell anyone about her AD, but that she herself found no reason to be ashamed.

Ignorance means that “the person is unable to know something that he or she desires to know. The person is confused, disoriented, ‘in the dark’” (McAdams, 1988, p. 158). Ignorance here concerned episodes of confusion, lack of knowledge about AD, and uncertainty about the future. Participants described situations where they had suddenly felt confused:

So I was going to go out with the dog myself ()—we went round the corner of a house and then I didn’t know where I was (). I went round and round and I was close () to tears.

At home this happened daily, for example when walking into a room, they would then remain standing, unable to recall their errand. Ignorance also concerned feeling powerless and unable to acquire sufficient knowledge about AD to improve health:

This is just the beginning (research about AD), () it’s unbelievably difficult to get the relevant information () you can trust. () It’s something of course that we’ve got together here, having a bit of an idea of what it’s about. But we have nowhere near enough information for us to get well.

Participants expressed uncertainty about the future, that is, ignorance about their future fate:

This thing just keeps on going. But you don’t get to know when you’re going to die, you just die.

Conflict means negative experiences resulting from “a conflict or disagreement between the person and others. This includes arguments or fights” (McAdams, 1988, p. 158). Conflicts were not a major topic in the group. One participant spoke of his driving license having been withdrawn without individual assessment:

I can drive a car too but I’m not allowed. I can find my way home and . . . I recognize the way (). They take your driving license, you know.

Although he did not mention contesting the suspension of his driving license, he did not agree with it. His opinion of his driving skills conflicted with the opinion of the authorities.

Communion and Lack of Communion

Participants spoke about communion in the past and present, but less of future communion. Their accounts of communion were often ambiguous, and mainly expressed feeling in communion with family members, but separated and rejected from parts of society. There were, however, also accounts of a lack of communion with family members. Participants expressed communion with other people with AD and within the support group.

Love/friendship entails a “positive emotional bond between peers” (McAdams et al., 1996, p. 349). Although there were no explicit declarations of friendship or love, participants described situations when they enjoyed the company of friends and spouses:

My husband is always busy with something else, although we do other nice things. We often go to the theater and a few other things, visit friends and are often out travelling. So then I think we live slightly different lives.

Expressions of present love and friendship were ambiguous. In the above quote, although the participant was happy about her husband, she also described living separate lives. Another participant noted that her circle of friends was decreasing:

They’re dropping off all the time (laughs), people around, but you have all your siblings and your grandchildren and you have . . . yes, anyway, some who are close like that, who have always been there () otherwise there isn’t much on, but it doesn’t matter, it’s enough.

While this participant was content with the situation, others felt separated and rejected, and would like to see friends more often.

Dialogue means “reciprocal and non-instrumental dialogue” (McAdams et al., 1996, p. 350), which in itself creates a sense of intimacy between people. Dialogue here concerned the conversations of the support group:

You can also kind of talk to one another, understand one another more, because the completely healthy ones can’t always () understand how it is.

Participants said they felt listened to and understood, which they did not always feel among other people. They said they could speak freely in the group because they shared the same problems.

Caring/help entails “expressions of altruism, sympathy, care, and helping others in need” (McAdams et al., 1996, p. 350). Participants described themselves as people who cared for and helped others. They expressed concern for each other in the group, and said they had always tried to help other people:

Facilitator:

What’s important to you in life now? Now that you can’t [work].

Participant:

Well, to be there when my family needs me, or relatives or clubs.

Facilitator:

And in those areas you still have a role ()?

Participant:

Yes, there are niches (), I try but I’m not sure I do any good.

Participants said that they still tried to help, although their ability to assist others had decreased. When they could help, they said they felt valuable. They spoke about the importance of helping each other in the group, so that all members and not only the most talkative were heard.

Unity/togetherness (McAdams et al., 2006; in earlier works called “community”) encompasses “a sense of oneness, unity, harmony, synchrony, togetherness, belongingness, allegiance, or solidarity with a group of people, a community, or even all of humankind together” (McAdams et al., 1996, p. 351). Here, unity/togetherness concerned experiences of connectedness and being acknowledged as a person. Participants expressed connectedness to their families. Children and grandchildren made life worthwhile. They described feeling loved and cherished by their families. One participant saw his former colleagues every day:

I go to work and have coffee every morning, you know (). Then I have something to do (). And I get to hear a bit of gossip (). Yes, so . . . you’re not anonymous.

Through them he felt affirmed. Being active and involved meant living a positive life. When speaking about their backgrounds, participants also showed that they felt connected to their roots. They spoke about all people sharing the same human conditions, including illness and death, indicating that they felt connected to mankind. Participants also spoke about the growing number of people with AD, which showed connectedness to other people with AD and to each other in the group.

Separation entails negative emotions about being “separated from friends, family, or lover” (McAdams, 1988, p. 158). Here separation concerned feeling disconnected from other people and life. Because of early retirement due to the onset of AD, participants said that they sometimes felt left out:

Everyone goes to work and you’re left standing there.

Social life also deteriorated, and sometimes participants did not keep in touch themselves because of embarrassment over symptoms:

I can’t say you have a bad life but you’re missing something, I can’t really express what kind of life it is that you have. There aren’t that many who care about you. You don’t have many people call (). I don’t take much initiative either, sitting there, stuttering.

Due to AD, it was difficult to participate in society, keep informed, and partake in discussions as before. Participants said that to participate they needed help, which was not always available. They also had less strength than before and sometimes prioritized a few close relations.

Rejection means negative emotions from having been “rejected by somebody who has been a friend or lover. The other person wishes to terminate a previously intimate (loving, caring, communicative) relationship” (McAdams, 1988, p. 159). Here, rejection concerned feeling rejected, maltreated, and let down by family members, friends, professional caregivers, and stigmatized by society. Participants described how their memory problems made them constantly repeat and ask things. They knew that this was difficult for their families, but when family members made impatient remarks, it upset them. They spoke about friends and acquaintances avoiding, neglecting, and not calling them anymore:

I hardly know myself what it is, how it’s going to be and . . . (). Some people are almost embarrassed, what they should say and . . . (). Then they withdraw instead (). I understand them. I’d be like that too ().

Participants said that people lacked patience and understanding and did not listen to them. When others were considerate in a way that was not perceived to be genuine, this was also hurtful. Participants spoke about people making light of their condition, being ignorant about AD, and said that AD had low status in society, health care, and research. They avoided insensitive people:

I choose not to (). I don’t have the energy for this problem! () I can’t handle certain people who don’t understand.

One participant worried about becoming nasty and that people would not want to be with her. Participants said that AD was nothing to be ashamed of, but that they tried to conceal their symptoms in public so that people would not think they were “mad” or strange:

You might not always say that you’re like this, you’re nuts, you get labeled.

One participant said she felt rejected by professional caregivers and the care system. After receiving her diagnosis, she had merely been sent home with some pills, and it was difficult to get the help that she needed from home care services.

Disillusionment about people means the person declares having “lost faith in others (either a particular other or a group or even all of humankind) or is feeling disillusionment about people” (McAdams, 1988, p. 159). Here, this concerned experiences of lacking gratitude, concern, and attention from others. The disillusionment was implicit. One participant said that he had made great contributions at work, but not received much gratitude. Another participant described how a friend had treated her insensitively. Participants also expressed disillusionment about people who they perceived did not support them in their situation with AD. One participant had expected more support from his wife:

So you don’t want to go and ask for the umpteenth time (). Yes, but I told you already, she says (). It doesn’t feel good (). I go and do something else (). You would think that . . . they would be a bit insightful about this.

Another participant expressed mistrust in physicians since they had first failed to diagnose her AD correctly, and then disclosed the diagnosis abruptly. She perceived physicians as nonchalant and disinterested in people with AD.

Another’s misfortune means the person “is saddened by another’s misfortune, pain, or death” (McAdams, 1988, p. 159). Here, this concerned sadness on behalf of family members who had to deal with participants having AD:

You have to take it as it comes, like, but I think it’s worse for relatives than it is for me.

Despite grieving her own losses and worrying about the future, this participant said that the worst thing was that her family was burdened by her illness.

Discussion

The main finding of the present study was that agency and communion, the quest for autonomy and connectedness, were essential to participants’ sense of self. It was apparent that participants had lost some of their agency and communion and kept and gained agency and communion in other aspects. Agency was most apparent in accounts of previous and present self-mastery and achievements. Participants were proud about the things they had achieved earlier in life, and of how they handled their present difficulties. A lack of agency was especially pronounced as failure and weakness due to having AD. Communion was most pronounced in accounts of unity and togetherness with friends, family, roots, each other, and all people with AD. Participants described being loved and cherished by their families. Lack of communion was also found, especially in the accounts of separation, rejection, and disillusionment about people.

Past achievements and attributes made essential contribution to the participants’ sense of self. Other researchers have similarly found that past attributes were vital to the sense of self in people with AD (MacRae, 2010; Sabat, 2001). This highlights the importance of including past and future attributes with the present to understand how people sense their self. This is especially urgent when past attributes are more highly valued by the person than present ones, as is often the case in people with AD. In an unrestricted view of self (Harré, 1998, p. 92), possible future attributes are included with past and present, as opposed to a restricted view including only present attributes. In our findings, the participants’ possible future attributes concerned hope to retain their agency and current abilities as long as possible and fear of becoming more dependent. This finding is similar to other research, showing that people with DD hoped that they had been wrongly diagnosed, that their memory would improve, a cure would be discovered, and their present medication would prevent further deterioration (Clare, 2002). Furthermore, Steeman, Dierckx de Casterlé, Godderis, and Grypdonck (2006) found that people with DD worried about increasing cognitive and social losses, becoming a burden, and being abandoned. In a comparison between people with and without AD, Cotrell and Hooker (2005) found that the possible future selves involved mainly the same domains, which were hope concerning health, family, and leisure activities, and fear concerning health and bereavement.

Participants expressed pride, not only in previous attributes but also in how they currently managed things. They also said that other people did not acknowledge the nature and severity of their difficulties. Other researchers have also described that people with AD emphasize their coping abilities (de Boer et al., 2007) and claim their difficulties are not understood by others (Morhardt et al., 2003; Örulv, 2012). Agency and communion have been described as dimensions of a good life for people with advanced AD (Zingmark, Sandman, & Norberg, 2002), and communion considered essential in creating caring relations with people with DD (Hansebo & Kihlgren, 2002; Norberg, 2001; Normann, Norberg, & Asplund, 2002). Although the persisting agency in people with AD has recently received more attention in research and society, the general picture is still dominated by failure and weakness. It cannot be denied that AD implies impairments. The present findings call for further insight into the strengths and abilities that people with AD possess, and about the difficulties they face. To better acknowledge their efforts would be beneficial to their sense of self.

Lack of communion was of great concern to participants. Their sense of being separated and rejected was triggered by enforced early retirement, perceived lack of attention from the care system, friends who had stopped calling, and the lack of understanding, recognition, and patience from others with their difficulties. Participants also described withdrawing themselves due to lack of energy, embarrassment, and inability to cope with unsupportive people. A report based on a large web survey conducted by Alzheimer’s Disease International (Batsch et al., 2012) showed that stigma was commonly perceived by people with AD. Burgener, Buckwalter, Perkhounkova, and Liu (2013) found that perceived stigma, framed as social rejection, internalized shame and social isolation, was associated with depression, anxiety, behavioral symptoms, personal control, perceived physical health, self-esteem, social support, and activity participation in people with early-stage DD. The relationships were complex and influenced by, for example, gender, educational level, and living arrangements (Burgener et al., 2013).

In the light of the present findings, counter-acting a sense of being separated and rejected in people with AD appears vital to maintaining their sense of self. Alzheimer’s Disease International (Batsch et al., 2012) recommends national planning for dementia-friendly environments and access to support groups to alleviate the stigma of AD. The present findings add to previous research showing the benefits of support groups for people with DD (e.g., Beard & Fox, 2008; Clare, Rowlands, & Quin, 2008; Offord et al., 2006; Örulv, 2012; Theurer, Wister, Sixsmith, Chaudhury, & Lovegreen, 2012). Participants found communion with each other in the support group, and said it provided an opportunity to speak openly about AD to people who listened, understood, and were supportive. Agency was also manifested by sharing experiences of achievements and knowledge and providing others help. Participants were able to sustain both agency and communion, and thus their sense of self.

Methodological Considerations

Using agency and communion as an interpreting frame has brought a deeper understanding of important aspects of self. McAdams’ coding scheme helped in further clarifying the concepts, making them visible in the data, and sorting them. The scheme was originally constructed for quantitative analysis of short written life stories about specific events (McAdams, 1988). However, the themes have also been used in qualitative analyses of interviews (Gallia & Pines, 2009; Polimeni, 2004). By selecting a theoretical framework to guide the interpretation, data not fitting into the frame may be missed. The authors have aimed to consider all expressions of Self 2, not only those easily fitting into the scheme. We have strived to underpin interpretations with quotes, allowing readers to assess the plausibility of our analysis. The findings from qualitative research cannot be generalized. They might, however, be transferable to similar contexts (Graneheim & Lundman, 2004; Lincoln & Guba, 1985). To enable readers to assess transferability, we have aimed to provide detailed information about the context, participants, and procedures.

Conclusion

Expressions of Self 2 by people with mild and moderate AD in a support group were interpreted in terms of agency and communion. Applying this framework has deepened previous understanding of how people with AD express their sense of self. Past and possible future attributes were important aspects of self, and the findings suggest that supporting a sense of agency and communion in people with AD is crucial in assisting them in maintaining a positive sense of self. It is equally essential to acknowledge the importance of previous attributes in the construction of self in people with AD, and support groups appear to be useful in sustaining a sense of agency and communion in people with mild and moderate AD.

Footnotes

Acknowledgements

We thank the participants, facilitator, and managers of the support group project for their invaluable contributions to the study. We also thank the anonymous reviewers for their constructive comments in improving this article.

Declaration of Conflicting Interests

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

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The study has been financially supported by 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.

Author Biographies

Ragnhild Hedman, RNT, MSN, is a PhD student at Karolinska Institutet, Department of Neurobiology, Care Sciences, and Society and a lecturer at Ersta Sköndal University College in Stockholm, Sweden. Her research interest is in sense of self in people with Alzheimer’s disease, and she has a background in gerontological nursing.

Görel Hansebo, RNT, PhD, is an associate professor at Ersta Sköndal University College, and associated to Karolinska Institutet, Department of Neurobiology, Care Science, and Society in Stockholm, Sweden. Her main research interest is in elderly care and care of persons with dementia.

Britt-Marie Ternestedt, RNT, PhD, is a professor at Ersta Sköndal University College, Palliative Research Centre, and affiliated to Karolinska Institutet, Department of Neurobiology, Care Science, and Society in Stockholm, Sweden. Her main research interest is sense of self in dying persons in palliative care.

Ingrid Hellström, RN, PhD, is a senior lecturer at Department of Social and Welfare Studies and a researcher at Center for dementia research, Linköping University, and an associate professor at Ersta Sköndal University College, Stockholm, Sweden. She has a background in clinical gerontological nursing, especially in the care of persons with dementia. Her main research interest is people with dementia and their families.

Astrid Norberg, RN, PhD, is professor emerita at Umeå University, and senior professor at the palliative Research Centre, Ersta Sköndal University College, Stockholm, Sweden. Her main research interest lies in sense of self in persons with late-stage dementia disease and stress of conscience.

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