Autobiographical occasions in assessment meetings involving persons with dementia

Abstract

It has often been argued that identities have a strong connection to stories and storytelling and thus that life stories should be used to individualize care for people with dementia. A problem with this view is that storytellers are seen as individuals, freely reflecting on, composing, and telling life stories. This view becomes especially problematic when persons with dementia tell stories in institutional contexts where certain information is requested and necessary for decision-making. The aim of this study is to investigate how autobiographical stories are used and what functions they have in assessment meetings involving persons with dementia. Fifteen assessment meetings were audio-recorded and transcribed. Narratives were extracted and analyzed by coding who the narrator or narrators were, what the narrator(s) accomplished by telling this story, and what the consequences were for the ongoing meeting. It was found that all interlocutors told stories about the person with dementia. These stories were found to have three functions: (1) to justify why care services were needed; (2) to describe experiences about previous care; and (3) to provide a good working climate. Thus, not all autobiographical stories are the person's story. For care managers in their everyday work it is important to be aware of this and not only be satisfied with a story that suits the organization's needs. Furthermore, stories told in assessment meetings often positioned the person as dependent on others, which could undermine the identity and sense of self of the person with dementia.

Keywords

Dementia case management care services decision-making narrative story-telling

Introduction

The concepts of self and identity have become central in the field of dementia studies as a way of stressing that people with dementia are persons and remain so even as the disease progresses (Sabat and Harré, 1992). A number of social scientists and philosophers have further argued that identities and selves have a strong connection to stories and storytelling. The argument is that by turning lived experiences into events in autobiographical stories, identities and selves emerge. Autobiographical stories not only connect events, but also configure these events and the life thus acquires a higher order of meaning. When memories are transformed into stories it becomes possible to interpret them; it is through this reading or reflection that a self and an identity are constructed (Freeman, 1993, 2010; Randall and McKim, 2008). In that sense, identity is not only “a construction but a reflexive construction” as the psychologist and narrative researcher Jens Brockmeier points out:

it means interpreting and reconstructing these [life] events along the lines of genres or other narrative conventions provided by culture. In this view, then, the discourse genre of autobiographical narrative is the central place where personal experiences and their evaluations come to be interwoven with the threads of a life history (Brockmeier, 2000: 53).

These autobiographical life stories can be used in several ways in order to tell or show something about who the teller is and what kind of person he or she is, has been, or plans to be in the future. This view of narrative identity connects identity with the ubiquitous everyday activity of storytelling, both the telling of “small” stories in conversations (Bamberg, 2006) as well as the telling of longer and more elaborated “big” life stories (Freeman, 2006) or clinical methods like “life story review” (McKeown et al., 2006). A problem is that autobiographical storytellers often are seen as individuals, freely reflecting on, composing, and telling life stories. This view becomes especially problematic when persons tell autobiographical stories in institutional contexts like in care or clinical settings or in other contexts where certain kinds of information are requested and necessary for decision-making. That is, what the sociologist Robert Zussman has called “autobiographical occasions”: “moments when narratives of the self meet social structure” and autobiographical stories are “products of considerable constraint” (Zussman, 2006: 29). Both the structure and the content of these autobiographical stories are marked by the institutional needs rather than the individual teller's preferences. The individual teller also has little control over the structure and content of the story. This often becomes quite problematic and has consequences for the presentation of identities, as especially care and clinical encounters are based on what persons lack or are unable to do by themselves; that is, on persons' shortcomings rather than strengths (Juhila et al., 2003). Thus, autobiographical stories told in institutional settings can be used to undermine the identity of a person rather than to present her/him as a competent agent.

In the following study,¹ one kind of “autobiographical occasion” is in focus, namely assessment meetings when the formal client is a person with dementia. These meetings also involve social workers and usually the relatives of the person with dementia. These meetings are interesting as persons with dementia often have problems telling autobiographical stories on their own due to their cognitive and linguistic challenges, and generally need to tell these stories collaboratively. Furthermore, persons with dementia often face severe general communicative problems turning conversation into a challenge, especially those in alien settings involving unknown persons. The aim of this study is to investigate how autobiographical stories are used and what functions they have in these assessment meetings. Of particular interest for this study is who the storytellers are, their relationship to the events told, and the interactional consequences, especially in terms of control of the story told.

Institutional settings and autobiographical stories

Usually citizens bring their problems to some kind of institution in order to get help. Before help or support can be given by the agency, the citizen's problems must be assessed by a professional. If there is a need for support, then the agency can provide measures to help and assist. Citizens pursue, present, and negotiate their practical goals mainly through talk. In the same way, most of “the daily working activities of many professionals and organizational representatives are conducted” through talk (Drew and Heritage, 1992: 3). These institutional conversations have at least two characteristics: (1) the special constraints on what conversational topics and perspectives on these topics count as relevant and allowable; and (2) the interactional division of conversational work—who is doing what in the conversation—is tied to institution-relevant identities like “social worker” and “client” (cf. Drew and Heritage, 1992).

In most institutional settings people—clients, plaintiffs, patients—are requested to tell personal or autobiographical stories. The reason is that the institutional personnel:

need a certain kind of story but need it to be the client's story. The story must be at once conventional and authentic. For that reason, institutional personnel often coach clients on how to tell their stories properly (Polletta et al., 2011: 115).

Medical doctors need to know about the patients' problems as part of the diagnostic process, therapists primarily work through the stories told by their clients, and social workers need their clients' stories in order to assess their problems and to better understand their unique perception of the problem. Hence these professionals ask questions in order to guide the clients or patients to tell their stories about their personal experiences in specific ways that correspond to the task and information need of the organization. As in all institutional conversations, certain topics are more relevant than others although this is not always obvious to the client or patient. The professional's questions thus aim at eliciting narrations about certain events, experiences, and conditions and reactions to these, rather than other events, experiences, and conditions.

This way of organizing storytelling has certain consequences for how the story emerges. Often stories are considered to be well-organized discursive units similar to those personal experience narratives Labov and Waletzky (1997) discussed as being distinguished by event clauses that follow each other in time and that are evaluated by the storyteller. In contrast to Labov and Waletzky's (1997) definition of the structure and organization of the personal experience story, Ochs and Capps (2001) refer to stories told in conversations as social phenomena that occur in social exchanges amongst multiple storytellers, and that the narrator and the participants use in order to construct accounts of their ordinary lives. Furthermore, a living narrative does not have a pre-determined plot; instead the plot emerges as the interlocutors converse with each other. Thus, according to Ochs and Capps, conversational stories are co-authored by the conversational participants rather than produced by one teller. This view of conversational stories as co-authored fits well in understanding how stories told in institutional conversations are organized.

In a study of storytelling in encounters between academic counselors and students, He argues that the counselor guides the student “through a series of question-answer adjacency pairs in terms of both the content of telling and the order in which telling is performed” (He, 1996: 209). The counselor pursues the student's storytelling by posing more or less open-ended questions to the student, by evaluating what the student is telling in relation to whether it is relevant for the counselor or not. Thus, the counselor also suggests how certain events are to be framed and evaluated. As a consequence, the roles of teller and listener are blurred and the resulting story is best seen as co-constructed between counselor and student (He, 1996).

A problem with storytelling in institutional settings is that the layperson is used to telling autobiographical stories as a way to present and negotiate aspects of their identities. As Polletta et al. (2011) point out,

people often resist telling the stories that are expected of them. Sometimes, the expected narrative conflicts with their view of who they are. It makes them seem passive or incompetent or too much like everyone else or as if they are exaggerating the severity of their experience (p. 116)

In other words, from the perspective of the layperson the stories that are co-constructed may not present the layperson with the kind of identity and self he or she wants to pursue. Rather, in institutional settings it is often important for the institutional representative to pursue the shortcomings, the problems, or the weaknesses of the patient or client, as these often constitute a reason for suggesting support or help, while perceived strengths often are seen as contra-indications for support.

For persons living with dementia who participate in this kind of institutional storytelling it becomes especially challenging, as they may experience difficulties in constructing autobiographical stories in conversations as well as in having access to all the linguistic resources often needed to present and negotiate stories in these settings. Thus, the problems for persons living with dementia to control and influence the autobiographical stories in institutional contexts become even more difficult than for most other laypersons. Often relatives attend institutional meetings together with the person living with dementia, in particular if the meetings involve decision-making. Relatives may support the person living with dementia in telling autobiographical stories, although they, like the institutional professional, may have their own agendas, aiming for a certain type of support for the person with dementia. Thus, both relatives and the institutional representative may have vested interests in the way the personal experience stories of the person living with dementia are told, organized, and presented. Furthermore, the relative may be able to provide stories or story elements about the person with dementia, serving as a proxy for their personal experiences.

The institutional context can thus complicate the autobiographical storytelling, making the often suggested and supposed close connection between this kind of stories and identity constrained by interests and inclinations due to institutional features rather than the individual story telling. The institutional context is more than a physical institutional setting, rather it is about the involvement of statutory services and formal processes. Consequently, institutional meetings occur in different physical settings such as the person's home, or at a care institution.

Material and methods

Data collection

This study is based on naturalistic data (Silverman, 2013) consisting of 15 audio-recorded assessment meetings. Data was collected at two social welfare offices in two different Swedish municipalities. An initial contact was established with administrators at these two social welfare offices. These administrators were informed about the aim and method of this study and asked if they were willing to let social workers working at their welfare office participate. Both administrators approved and the first author informed social workers verbally and in written form about the aim and method of the present study. Care managers working at these two welfare offices were informed by letter and through a meeting about the aim and method of this study. Furthermore, they were informed about what was expected of them in terms of workload if they decided to participate. Those who decided to participate contacted the first author in order to give their informed consent.

Consecutive sampling was used to select meetings to be included; when an assessment meeting with a client with dementia was planned by participating social workers, they asked potential participants if they would like to receive information about this study. Thus, social workers decided which clients to contact. Consequently, the initial contact with potential participants was made by the social workers without any involvement of the researcher. This procedure was settled by the ethical review board. Due to the Confidentiality Act (SFS 2009:400) regulating how information about clients or applicants within the social services should be handled, we as researchers could not directly approach potential participants to give information about this study. Neither could we, before they agreed to get information from us, contact them in order to decide on if they were suitable to be included in this research or not. For a case to be included in this research, the formal applicant needed to have a confirmed diagnosis of dementia.

If they agreed to be contacted by us, a description of the study was mailed to them and they were subsequently called on the phone to receive further information. Potential participants were asked over the phone if they were willing to participate after they had received oral information about the study. If they decided to participate, the first author arrived at the meeting along with the care manager. Once again, information about the study was given, both orally and in written form, and all parties were asked if they agreed to participate.

The assessment meetings were audio-recorded and later on transcribed in detail in accordance to what the participants actually said. Fifteen assessment meetings, conducted by seven different care managers were included. The meetings varied in length from 17 to 57 minutes, with an average of 40 minutes. Mini-mental state examination (MMSE) results were not available for participating people with dementia. Based on social worker's and relatives' statements, and the situation for the person with dementia, there seems to be a spread in the stage of dementia disease. Time since diagnosis differs between the participants, from one month to several years. Descriptive data about the meetings is presented in Table 1 and descriptive data about the persons with dementia is presented in Table 2. All names of persons and places are fictitious. Ethical approval was obtained from the Regional Ethical Review Board, Dnr 2011/493-31.

Table 1.

Descriptive data of the 15 assessment meetings.

Case	Participants	Place for meeting	Main discussed support	Duration (minutes)	First meeting	Contact before meeting
1	CM1, S	Local social welfare office	Personal assistance	25	No	S
2	CM1, PWD, H, D	Short-term care facilities	Home care, caregiver subsidy	43	Yes	D
3	CM2, RN, PWD	PWD's home	Sheltered housing	50	Yes	W
4	CM3, PWD, S	PWD's home	Other accommodations	59	Yes	DL
5	CM1, PWD, W	PWD's home	Relief services (walks), information	57	Yes^a	W
6	CM4, PWD, S, DL	PWD's home	Extended short-term care, follow-up meeting	23	No	S
7	CM5, AN, PWD, W, D	Short-term care facilities	Safety alarm, home care, follow-up meeting	24	No	D
8	CM6, PWD, B, DR	PWD's home located in sheltered housing	Residential care	32	Yes	DR
9	CM7, PWD, D, S	PWD's home	Home care, information	49	Yes	D
10	CM4, PWD, W	Daycare center	Follow-up meeting, extended services	18	No	W
11	CM1, PWD, D	PWD's home	Residential care	46	Yes	D
12	CM4, PWD, D1, D2, AN, RN	Residential care facility	Residential care	34	No	D1
13	CM4, PWD, S, AN	Residential care facility	Residential care	29	No	S
14	CM5, PWD, D1, D2, S, ST	Hospital, office	Residential care	50	Yes	D1
15	CM6, PWD, D, AN	PWD's home	Residential care, day care	56	Yes	D

Note: CM: care manager; RN: registered nurse; AN: assistant nurse; PWD: person with dementia; H: husband; W: wife; S: son; D: daughter; B: brother; DL: daughter in law; DR: distant relative; ST: student.

The social worker and the wife of the person with dementia had met once before to discuss different supportive services.

Table 2.

Descriptive data of participating persons with dementia.

Case	Gender	Disease	Marital status	Previous supportive services
1	Male	AD	Divorced	None
2	Female	AD	Married	Short-term home
3	Male	VD	Married, living apart	None
4	Male	VD	Divorced	None
5	Male	LB	Married	Daycare center (not able to participate)
6	Female	USD	Widow	Short-term care (2 weeks home, 2 weeks at the short-term home)
7	Male	VD	Married	Short-term care (2 weeks home, 2 weeks at the short-term home)
8	Female	VD	Widow	Sheltered housing, home care 8 times/day
9	Female	AD	Widow	None
10	Male	USD	Married	Daycare center 2 times/week
11	Female	USD	Widow	Home care
12	Female	VD	Married	Short-term care, past 4 months
13	Male	AD	Widower	Short-term care
14	Female	VD	Widow	Home care
15	Female	USD	Widow	Home care 6 times/day

Note: AD: Alzheimer's disease; VD: vascular dementia; LB: Lewy body dementia; USD: unspecified dementia.

Data analysis

A qualitative approach of analysis of narratives was conducted, discourse analysis was used (Potter and Wetherell, 1987). All transcripts were scrutinized in order to identify and extract all stories that were told in these assessment meetings. We decided to be inclusive at this stage and “let data speak to us,” so that alternative ways or uncommon ways of telling stories would not be missed. Therefore, a broad definition of stories was used at this stage, and talk that referred to specific or unspecific past events was thought of as a story. All participants' stories were extracted, and no extra focus was given to those narrated by or about the person with dementia.

These data extracts were then read repeatedly in order to get a sufficient understanding of them. When going through the data extracts, we found that they could be divided into stories of past events and reported talk. Reported talk in these meetings consisted of general statements of how different things usually occurred or had occurred in the past, usually with instrumental characteristics. We decided to go on with stories told about specific past events in this study.

All remaining stories at this stage were coded based on whom the events concerned. This was addressed by coding who the narrator or narrators was/were. By coding all data extracts, descriptive statistics about stories and who the narrator(s) was/were, were created for each meeting. The functions of these stories were then coded, more specifically, what does/do the narrator(s) accomplish by telling this story and how the constructions of the person with dementia were framing the rest of the meeting? Finally, a general understanding of autobiographical stories was created. This general understanding is presented in the result section of this article alongside examples from the data. These are longer data extracts that are presented in order to ensure transparency in our analysis. We discuss our findings in relation to these examples.

In qualitative research, examples are often selected by the researcher. This implies a risk, that examples are chosen in order to fit the analytic argument. A way to handle this potential risk for bias is to describe how often a phenomenon occurs (Silverman, 2013). Thus, descriptive statistics of the functions of narratives as well as different constellations of narrators has been presented in the findings section. Furthermore, to increase the quality examples from more than one case is used in the findings section.

Findings

Different functions that stories had in these assessment meetings were identified in the data. Three types of functions were found: (1) stories were used in order to justify why care services were needed; (2) stories were used to describe experiences with previous care services or to give accounts of how previous discussions about care services has unfolded; (3) stories were used to provide a good working climate amongst the participants. These functions are presented in Table 3. As these stories were a part of an institutional process where needs and wishes are investigated, they seem to contribute to the construction of a common understanding of the person's situation and need for care services, but in different ways. These stories involved topics such as events from the past, everyday life situations, and activities of daily living.

Table 3.

Functions of stories in studied assessment meetings.

Functions of narratives	Number of cases	Total number of occurrences
To justify the need of care services	10	37
To describe previous experiences and discussions about care services	11	25
To provide a good working climate	9	19

There are three main constellations of narrators where the person with dementia, relatives, and professionals tell stories: (1) alone, (2) in pairs, or (3) all together. Most common in the studied meetings was that relatives were the only narrators, although there were occasions when the persons with dementia or professionals were the only narrators. The constellation of co-narrators that was most common was persons with dementia and relatives together. There were also sequences when relatives told stories together with the professional, and others when the person with dementia told stories together with the professional. In Table 4, the constellations of narrators are presented in relation to numbers of cases and the amount of stories told.

Table 4.

Constellations of narrators in relation to cases and stories told.

Narrator(s)	Number of cases	Total number of stories
Relatives	10	17
Relatives and person with dementia	6	15
Person with dementia	6	13
Relatives and professionals	5	6
Professionals	5	8
Person with dementia and professionals	4	5
Everyone together	6	17

Justifying the need for care

Stories that were told to justify why care services were needed revolved around hinders in everyday activities, such as problems for the persons with dementia in going to the grocery store or caring for their personal hygiene. It also involved stories where the person's abilities were in focus, where her/his abilities were insufficient to manage everyday activities. Illness narratives were also used to justify the need for care, and were accomplished by telling stories about previous operations, strokes, and meetings with other health care professionals. By narrating these stories, the person with dementia either positioned him-/herself or were positioned by others as in need of support. There are several examples in the material when participants told different stories about what had happened previously in the person with dementia's life, or in specific situations. By doing so, they took the role of an author and presented what they thought was important to take into consideration when the need for care services was assessed.

The following sequence (Example 1) is from Case 11, and the main topic of discussion had to do with if the person with dementia needed a place in a residential care facility. In this meeting, the main negotiation was conducted by the care manager and the person with dementia's daughter. In this sequence, the daughter is the main narrator, supported by the care manager. The story is about the person with dementia, who experienced back pain because she tripped and fell recently. By telling this story, the person with dementia is positioned as in need of care services, her life situation is problematic and she could be injured. Participants at this meeting were the care manager, the person with dementia, and her daughter.

Example 1 CM = Care manager, PWD = person with dementia

1. Daughter: like yesterday I came to you because you had pains (,) in your back and you have you fall and you don't know

2. CM: oh well

3. Daughter: how you've fallen when you fell and we don't know that either

4. CM: no no no

5. Daughter: mm you've sprained your foot a couple of times and you've fallen on the stairs yes that was in the service home so then there were staff

6. CM: yes

7. Daughter: but this last time we have no idea how it happened

8. CM: no lay

9. Daughter: yes

10. CM: was Gunvor lying on the floor when the home help service came then or

11. Daughter: noo

12. CM: no

13. Daughter: she only sprained her foot you know

14. CM: aha did she get up herself

15. Daughter: the first time yes I don't know how

16. CM: no no no

17. Daughter: we don't know (little laugh))

18. CM: no no

19. PWD: nor do I

20. Daughter: but then the district nurse came and examined Mom and

21. CM: yes yes

22. Daughter: yes we have good contact with her

23. CM: mm which one of the district nurses is it

24. Daughter: Erika

When the daughter begins to tell the story she talks as if she is addressing her mother—the person with dementia: she is using second person pronouns (in Swedish “du”—“you”). At the same time, it can be assumed that the story is also told for the benefit of the care manager who is present and listening. This is affirmed through the fact that the care manager is the one who either confirms her understanding of the story (for instance, Lines 3 and 5) or adds some comments (Lines 8, 10). Halfway through the story the daughter changes pronouns when she refers to her mother, from second person to third person pronoun (“she”) or her name (“Gunvor”) thus further indicating that the person actually being addressed is the care manager. The mother only supplies information once when she confirms that she does not know why and how she tripped and fell. When she is telling the story the daughter uses a collective epistemic stance: a “we” who knows or does not know about her mother tripping. This is a way to convey the information to the care manager by including the mother as someone who actually is knowledgeable about what had happened.

In Line 10, the care manager asks a question about the constituent event, if the person with dementia was lying on the floor when the home help care arrived. It is a question that assessed the seriousness of the event and the person with dementia's abilities. The question was declined by the daughter who furthermore evaluates her story, that it only was a twisting of her mother's foot, which also mediates the tension in the narrative. The care manager asks another question—if the person with dementia got up from the floor herself. As a response to this question the daughter states that she does not know, adding the dimension of uncertainty experienced by them as relatives. Here, the person with dementia for the first time in this narrative intervenes by stating that she does not know either. The end of this narrative is indicated by the daughter, who states that a district nurse came and examined her mother and that they have a good contact with that nurse. The care manager takes this turn as an opportunity to partially change the topic, by asking who the district nurse is, which is answered by the daughter.

In Example 2, the person with dementia is the main narrator, and tells a story which justifies his need of care services. He wants to get help from the care manager to secure a place at a residential care facility. This example is extracted from Case 4 and occurs early in the conversation. During the assessment meeting the care manager judges the person to be too healthy for a place at a residential care facility, and instead encourages him to contact landlords who have apartments close to a meeting place for older persons, to accept food distribution from the municipality, and so forth. All alternative services offered to him are declined. Participants at this meeting were the person with dementia, his son, and the care manager.

Example 2 CM = Care manager, PWD = Person with dementia

1. CM: how is it with with with the health and such (,) when it comes to your health

2. PWD: it could be a little better

3. CM: it could be better

4. PWD: I'll tell you what it's about (small laugh))

5. CM: yes please do

6. PWD: yes, it's like this that I have a little

7. CM: I need something to write on

8. PWD: difficult to walk outside (,) ehh I went down to (.) e (.) to ICA [grocery store] down here about three weeks ago

9. CM: mm

10. PWD: and it was okay getting there (,) slow and steady one step at a time

11. CM: mm

12. PWD: I rolled along (,) then when I were to go home again then I came to a sudden stop then my legs began to go like this

13. CM: yes

14. PWD: and then and then I sank down on the street (,) and there I lay

15. CM: okay

16. PWD: then two ladies came along and helped me up they probably thought I was drunk

17. SON: (laugh))

18. CM: yes

19. PWD: so she looked at me for quite a while then she came over and asked me how are you can you manage to get up if I can lie here a while and rest so I lay there and rested and got better then I got up on my knees ((little laugh)) then

20. CM: mm

21. PWD: and then I looked around so I had or the next place and walk there then

22. CM: mm

23. PWD: and then there was a fence five meters away yes I can walk there I thought (,) I can walk there then there was a tree that I walked to so I walked five meters at a time like that

24. CM: mm

25. PWD: finally I got home (.)

26. CM: okay how do you feel about going out now

27. PWD: no I don't dare go out now

28. CM: you don't dare go out no

29. PWD: because I don't want to r- run into those ladies again (laugh)

30. CM: (laugh) it was the ladies that were the problem

31. PWD: yes that was the question yes

32. CM: yes okay

33. PWD: well well that's the way it is

The story started as a response to a question asked by the care manager, directed toward the person with dementia about his health status. The story is directed to the care manager, as the person with dementia opens the story with a statement that “I'll tell you.” By using the first person pronoun (the Swedish “jag”—“I”) he also positions himself as a competent interlocutor who knows his own needs and that he should present them himself. His introduction also suggests that his story is one example of many when his health has had consequences in his everyday life. The care manager affirms her position as the one to whom the story is directed, and acts as though what will come is important for her in her assessment by encouraging him to tell his story and by stating that she must have something to take notes on. Throughout the telling of the story, the person with dementia is the main narrator and the care manager acknowledges her listening by giving minimal responses (such as “mm”) to his story. The person with dementia recapitulates what happened to him when he walked home from the local grocery store. The story is filled with information that positions him as vulnerable and in need of support. The decision to tell this story supports his agenda, that he is in need of a place in a residential care facility as he is unable to accomplish everyday activities such as grocery shopping by himself.

The story is obviously not sufficient for the care manager to make a decision about residential care, because in line 26, she asks how he feels about leaving his home nowadays. Feeling unsafe in one's own home or surroundings is one of several criteria for a place at a residential care facility. This question makes the person with dementia's story relevant in the needs assessment process. His response is that he does not dare to go out any longer and he continues with something that could be understood as a joke (line 29): that he does not want to run into those two ladies again. This story and other justifications given by him were not enough to get an offer regarding residential care from the care manager, who judged that his needs could be satisfied by other supportive services, which the person with dementia declined.

In both of these examples stories were used to justify a need for care services. The persons with dementia were either positioned by others or positioned themselves as unable to care for themselves and thus in need of support. Nonetheless, they do not explicitly ask for support in connection with these stories. The care manager is the one in both of these two examples who makes the stories relevant for the needs assessment.

To describe previous experiences and discussions about care services

Stories were told in the assessment meeting in order to describe previous experiences and discussions about care services. These stories made it possible for different participants in the meetings to voice their own or some other person's wishes or opinions about care services. An example is what the person with dementia had expressed previously when they discussed care services. Stories were also told about previous experiences of how it had worked in the past. By telling these stories in the assessment meeting, the narrator ruled out services that had been unsuccessful in the past or in other cases argued for the continuation of services that had been successful when implemented before. These stories were about care services rather than needs that existed.

The following example (Example 3) is from Case 10. The meeting was a follow-up meeting of daycare but the care manager also offered new services such as home help and extended relief care. It was made clear in the conversation, that the wife did not wish to leave her husband by himself at home and that she was afraid that he would wander off in the surrounding countryside of their farm if nobody kept him company. Participants in the meeting were the care manager, the person with dementia, and his wife.

Example 3 CM = Care manager, PWD = Person with dementia

1. Wife: yes it was (.) eh when I was away at a lodge meeting during the week

2. CM: mm

3. Wife: and it gets late

4. CM: aa

5. Wife: so then well I promised that I would be home at ten-thirty I came home quarter after ten

6. CM: aa

7. Wife: and then I had to (,) leave early to get home by that time

8. CM: aa (,) but it was solved by the home help (.) coming

9. Wife: yes well it was thanks to some care manager from in here because otherwise the home help stops at nine

10. CM: aa

11. Wife: and then they have to leave (,) us at a quarter to nine

12. CM: aa

13. PWD: mm

14. Wife: and then and then I couldn't go to this I haven't been there the whole (.) whole time now a whole term

15. CM: mm

16. Wife: but then that care manager thought who called then and said that you were sick

17. CM: yes

18. Wife: then she thought that I should (.) absolutely be able to go to that

19. CM: yes

20. Wife: (.) so she called the home care service and they got a (,) staff member to come

21. CM: mm

22. Wife: and was there in the evening and that was that I really appreciated that they did that

In this story, the narrator is the person with dementia's wife who directs her story toward the care manager. The story is about the wife and how a discussion between her and another care manager about a special solution had made it possible for her to attend a lodge meeting. Furthermore, the story is about the implementation of this support on one occasion which made it possible for her to attend a very much appreciated social activity. She also positions herself as a good person to give support to, as she manages to be on time and arrive home earlier than promised. She tells about promising the home help that she would be back half past ten in the evening but she managed to arrive earlier. To be able to be home that early she had to leave the meeting before it was finished. In line 8, the care manager interrupts the wife's story to request a clarification and make the story coherent for her as a listener. This is done by a question/statement, of whether the home help could solve the problem. As a consequence, the wife tells what has occurred before that made it possible for her to attend this activity. By telling this story, she is both expressing her gratitude to the other care manager and raising a solution of how this situation can be handled in the future so she can continue to participate in these meetings.

Another example of a story used in order to describe previous experience of support is given in Case 14 (Example 4). Here, the story is not about care services for the person with dementia but for her husband who had passed away a couple of years earlier. Participants in the assessment meeting were the person with dementia, her three children, the care manager, and a student observing the care manager in her everyday work.

Example 4 CM = Care manager, PWD = Person with dementia

1. CM: have you received information about how it looks at our residential care homes and such earlier

2. Daughter 1: just just a little

3. PWD: yes (have not)

4. Son: aa

5. Daughter 1: was Mom when Dad our Dad

6. CM: mm

7. Daughter 1: our Dad he got leukemia and then he had a stroke

8. CM: mm

9. Daughter 1: then we went and looked I was and looked together at different places

10. Daughter 2: mm

11. CM: mm

12. Son: but that was a few years ago

13. Daughter 2: yes that's right

14. Daughter 1: yes that a few years ago mm

15. CM: mm

16. Daughter 1: so that's it mm

This story is told as a response to a question posed by the care manager, of whether they have any knowledge about residential care facilities in the municipality. One of the daughters, who also had a background in social work, starts to tell a story involving herself, the person with dementia, and the person with dementia's husband. The story is addressed to the care manager and is about when her dad was to be institutionalized. In line 5, the daughter refers to her mother in the third person (in Swedish “mamma”—“mum”) which further indicates that the story is told for the care manager. This is changed in line 9, where she once again refers to her mother using the first person plural pronoun (in Swedish “vi”—“we”), when she says that they visited some residential care facilities in the municipality. This story works as a positioning of them as knowledgeable about residential care facilities in the municipality and that they know how the support they are applying for works. But the son interrupts this story and questions the relevance of this experience by pointing out that it occurred a couple of years ago. It is interesting to note that the person with dementia earlier in this sequence seemed to express an uncertainty about how residential care worked in the municipality. This objection was not taken into account or heard and thus, the person with dementia's involvement in this story and in the decision at hand was marginalized. Later on in the assessment meeting the care manager describes what a residential care facility usually looks like and encourages them to visit some before they decide which of them they would like to prioritize in the application.

Both of these examples are typical cases of stories about previous experiences with care services. They both challenge the asymmetry that exists in institutional conversations where the professional usually is the one with information about care services and the process of how to implement them. In Example 3, this is most evident as the wife has had a discussion previously with another care manager and from this knows that it is possible to create a special solution in order for her to continue to attend her meetings. It also positions the laypersons as the experts in their own situation.

To provide a good working climate

Another way to use stories was to provide a good working climate. This could be accomplished by personal stories such as events that happened earlier in the life of the person with dementia. Another way was to bring in positive aspects from previous life experiences or occasions when the person with dementia had accomplished something. This worked as a way to ease the tension in these meetings. The person could also be encouraged directly by the care manager to tell a story. When stories were used to provide a good working climate the shortcomings of the person was not in focus. The care managers could also tell the other participants about personal things, such as where they had lived before or what they had worked with earlier. When care managers told such stories, the formal format of the meeting was loosened up.

The following example (Example 5) is extracted from Case 12. The assessment meeting was conducted at a residential care facility for persons with dementia. The person with dementia was staying there temporarily but the main purpose of this meeting was to make this place at the facility permanent. During the assessment meeting, the person with dementia seems to find it hard to engage in the assessment meeting. Instead, she talked to her daughters who simultaneously negotiated about care services with the professionals. Participants at this meeting were the person with dementia, two of her daughters, the care manager, a nurse working at the residential care facility, and an assisting nurse.

Example 5 PWD = Person with dementia

1. Nurse: that lovely yarn have you been out and bought that Lena

2. PWD: yes

3. Nurse: Agneta do you know

4. Assisting nurse: I don't know

5. Daughter 1: because she's so talented she sets up looms sometimes

6. Nurse: Lena

7. Daughter 1: and weaves the yarn

8. yes

9. Daughter 1: and set up on the chair back

10. yes

11. Assisting nurse: when I came to you one day then you were very clever

12. Daughter 1: yes you know how you did

13. yes

14. Assisting nurse: yes she's done that several times

15. Daughter 1: yes she remembers that from home

16. yes

This story is mainly constructed around reported talk. A question from the nurse starts the sequence. This question is neither about the needs nor the abilities of the person with dementia, and it is directed toward her by the use of her name (Lena). It could be thought of as an invitation for the person with dementia to tell a story about how the yarn came into her possession and as a way to involve her in the assessment conversation, which she previously had not engaged in. The person with dementia's response is minimal but relevant and the nurse turns her attention toward the assisting nurse. Some reported talk occurs where the person with dementia is described as clever and capable of preparing yarn by the use of two chairs, she is referred to in the third person pronoun for her (in Swedish “hon”—“she”). In line 11, a short story is presented by the assisting nurse about a previous event where she one day found the person with dementia doing this and that she was really good at it. Once again, a shift in the sequence is made and the person with dementia is referred to in the second person pronoun (in Swedish “du”—“you”). This short story positions the person with dementia as a competent person. The whole sequence works as a way to provide a good working climate in the assessment meeting. Here, something that the person with dementia is good at is highlighted and brought up in the conversation; not only her shortcomings are discussed.

Another example of how stories were used to provide a good working climate is presented in the following example (Example 6) from Case 9. This meeting is a first-time meeting between the care manager, the person with dementia, and her son and daughter. During this meeting, the person with dementia is first arguing against support and positioning herself as competent to manage her everyday activities and care for herself. Then her two children take over the negotiation and challenge her presentation. They position her as in need of daily support from the home help care team and in need of a safety alarm system. She then becomes more and more silent in the conversation and here the care manager asks her to tell a story. At the end of this meeting, a decision is made that staff from the home help team should visit her daily and that a personal safety alarm system should be installed in her home.

Example 6 CM = Care manager, PWD = Person with dementia

1. CM: is there anything you'd like to tell (,)

2. PWD: ((sighs/laughs)) I don't know what that might be

3. Son/Daughter: (laugh)

4. CM: what have you worked at during your life (.)

5. PWD: yes I've worked with

6. CM: mm

7. PWD: I probably have done that ((laughs)) that ehh (.) yes it's been a little (.) almost forgotten ((laughs))

8. Daughter: she's forgotten that

9. Son: mm

10. PWD: yes of course I've forgotten but it was a long time ago

11. Son/CM: mm

12. Daughter: yes but yes it's a long time ago

13. PWD: it is of course (,)

14. CM: yes it is

15. PWD: yes it is of course but

16. CM: mm

17. Daughter: yes

18. CM: but it's hard to remember maybe (,)

19. Daughter: look there and maybe you'll remember a little (points to a bowl of candy)

20. PWD: yes (laughs) I worked with (.) e at what's the old candy called

21. CM: the Candy Warehouse or

22. Daughter: mm

23. PWD: yes

24. Daughter: The Confectionery Factory it was called then

25. PWD: what

26. Daughter: The Confectionary Factory it was called then

27. Son: mm

28. PWD: The Confectionary Factory yes that's right

29. Daughter: mm it was a big company in town

30. PWD: mm I worked there

31. CM: with candy and such then

32. PWD: yes

33. CM: making candy

34. PWD: yes mm

35. CM: goodies

36. PWD/Daughter/Son: (laugh)

37. CM: do you slurp away every day eh or did you get tired of it after a while

38. PWD: yes well of course one took a little once in a while

39. CM/Daughter/PWD: (laugh)

40. Son: mm

41. PWD: ye-es

42. CM: mm

43. PWD: but

44. Daughter: then you were home with us took care of us when we were little

45. CM: mm

46. Daughter: from home

47. PWD: yes that's right

48. Son/Daughter: mm

49. PWD: there were three of course so that (little laugh)

50. Daughter: there was plenty

51. CM: plenty to do

52. PWD: yes

In this example, an invitation to tell a story is given to the person with dementia by the care manager who thereby loosens up the formal format of the assessment conversation. It also works as a way to ease the tension where they no longer have to focus on the incompetence of the person with dementia. By addressing the person with dementia directly the care manager also brings her back into the conversation and makes her voice relevant in the meeting. First, the person with dementia does not know what to tell, which is why the care manager specifies what she can center her story around. As can be seen in the example, the person with dementia still finds it problematic to start telling a story on demand. Her daughter helps her to start the story and together they tell about her working life history. The care manager also drives the story forward by making further comments. This also works as an encouragement for the person with dementia to continue her narration.

The daughter supports her mother in telling the story in two different ways. In line 19, the person with dementia is helped to remember what she has worked with before by the means of a gesture when her daughter points at a bowl filled with candy. In line 44, the daughter supports her mother once again by a statement/question (addressing her mother by using a second person pronoun, in Swedish “du”—“you”), as a way to develop the fact that she stayed home to care for her three children earlier in her life and thus had not been gainfully employed for very long. In this way, the story is told together by the person with dementia and her daughter.

Discussion and conclusions

As has often been pointed out, identity is constructed as an ongoing lifelong process (Charmaz, 1991; Kaufman, 1986), maintained and altered through interaction (Beard, 2004). Diseases or injuries might have negative impacts on selves and identities—what Sabat (2006) calls malignant positioning. When this is the case active reconstructions of the self must be conducted (Beard, 2004; Cohen-Mansfield et al., 2000; Williams, 1984). One way to re-construct identities is by the use of life narratives. Life stories are often used in health care as a way to improve and personalize care (Russell and Timmons, 2009) or to reconstruct self and identity after a biographical disruption caused by a disease or injury (Bury, 1982). In relation to people with Down's syndrome and dementia, research has shown that the person's well-being improved when life stories were used (Crook et al., 2016). Russell and Timmons (2009) for instance, showed that the stories persons with dementia themselves told increased and provided the staff with insight into the person's own understanding of themselves and their situation. Requesting stories from the person with dementia's past about memorable occasions has been identified as a strategy used by social work practitioners to engage the persons in storytelling (Scherrer et al., 2014).

Few studies have discussed the fact that autobiographical storytelling can be constrained by the framework of various kinds of care institutions—that is what stories are expected of the person with dementia in order to accomplish the institution's objectives. In order to accomplish the institution's objectives, the care staff's interest in life stories can be quite instrumental and not aim at withholding identity. In this article, it has been argued that stories were told and constrained by the institutions' requirements. In other words, stories were created and told in order to facilitate the accomplishment of the needs assessment process, and to conduct the categorization of the client. Stories were not used in order to express or restore the person with dementia's self. The consequences of the storytelling rather undermined the identity and self among the persons with dementia by centering on their shortcomings. The exception is the function of providing a good working climate, which seems to include some regard for the well-being of the persons with dementia by telling positive stories about them or involving them in the discussion by using stories without a sensitive character. Stories from the past are often thought of as important to organize care in accordance with the person's values and to ensure that identity is upheld. In the assessment meeting this seems not to be the case. In this study, stories about events in the past, told in assessment meetings, were brought to the fore in order to provide a good working climate. These stories had little or no relevance for the needs that were assessed and the negotiation about specific services.

In order to be a suitable candidate for support supplied by an institution, the clients usually need to present their problems and weaknesses. As has been shown in this article, stories in assessment meetings were told in different constellations by either one or multiple narrators. The person with dementia's story could also be told by someone else. This could result in various face-threatening situations where someone is sharing a story that the person with dementia did not want to tell, and due to the disease might not be able to challenge. A health care professional caring for the person with dementia or a relative of the client might be more willing to present unfavorable stories about the person or present the person as less capable than she or he actually is in order to “help” the person get access to support. Thus, the format of the assessment meeting and the use of stories could be a threat to the person's personhood. In dementia research personhood is a well-used concept usually defined as a “status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect, and trust” (Kitwood, 1997: 8). This poses a challenge for social workers, who must balance their need for information with respect for the individual's integrity and self. Should they interrupt stories that seem to be offensive for the person with dementia or should they encourage such stories in order to have enough information to make a decision that in the long run would make the person's life situation better? Are there other ways to get the same information and at the same time save face for the person with dementia? These are complex but important questions outside the scope of this study that need further investigations in future research.

The result of this study could also be discussed in relation to decision-making, which is the main goal of needs assessment meetings. Baldwin (2009) discusses narratives and decision-making and makes a distinction between narratively informed decision-making and narrative decision-making. The former uses “narrative as a source of data to inform decision-making; the more information we have, the more likely we are to make good decisions” (2009: 25). The latter “regards narrative as central to the decision-making process: employing narrative concept” (p. 25), such as narrative agency, which among other things involves the opportunity to construct one's own narrative, and characters who have different interests and preferred narrative trajectories. Narrative decision-making “reaches deeper into the lives of those concerned and produces, maintains and manifest a continuity of trajectory” (p. 35). In relation to care services Taghizadeh Larsson and Österholm (2014) showed in their review of recent literature about decision-making in care services, that relatives played a vital part in these decisions. In this study, we found something similar, that relatives were very much involved in stories about the person with dementia's needs and wishes but also raised their own needs and wishes in relation to care services and how the organization of services should be conducted by using stories. This is also interesting in relation to the Swedish Social Services Act (SFS 2001:453) that governs the needs assessment process, where self-determination is a guiding principle. It is clear in the act that the client is the one who should make the final decision to accept or reject care services. Relatives or existing forms of proxies do not have the formal right to intrude on any adult citizen's right to self-determination when decisions about social welfare are to be made. This is also the case for people with dementia (Klemme Nielsen, 2012).

As a concluding remark, detailed studies of communication can be used for educational purposes. Olaison and Cedersund (2009) argue that these types of studies can raise aspects of care manager's work that they previously might not have been aware of and that serve as a basis for discussion about sensitive matters. They can also be used for educational purposes for students in social work programs, in order to improve their work with people with dementia. Furthermore, as we have shown in this article, all stories are not the story of the person with dementia even though she or he is the one who is narrated into a position. In care managers' everyday work, it is important to be aware of this and not only be satisfied with a story that suits the organization's needs in order to categorize clients. Furthermore, stories told in assessment meetings usually position the person in question for support as being in need, which could undermine identity and sense of self.

Footnotes

Acknowledgments

We are grateful to all participants who took part in this study.

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 research was partly supported by a generous grant from the Swedish Riksbankens Jubileumsfond (M10-0187:1).

Note

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