The “not yet” horizon: Understandings of the future amongst couples living with dementia

Abstract

The way in which persons with dementia and their spouses regard the future could influence how they experience the disease itself. This study aims to explore how the future is understood by couples living with dementia. The analysis reveals different ways in which couples understand the future. The findings show that persons with dementia describe the here and now in ways that take the gloomy future they dread as a point of reference, and as a result of this, they operate in what we term “the not yet horizon”. But while they take for granted that there is a horizon that they have not yet reached, their spouses always seem to focus on the horizons that they have already crossed. The article discusses the findings in relation to ideas such as critical periods, existential coordinates and possible selves, and problematizes the implicit assumptions about the future that dementia researchers tend to operate from.

Keywords

couplehood dementia future marital relationships qualitative methods

Introduction

Chronic diseases disrupt everyday life, not only for the affected person, but also for people in the family and the social network, who all need to reconsider what the future holds (Bury, 1982). After a person with probable dementia has received the diagnosis, he or she embarks on a journey which is often referred to as the illness trajectory. With regard to this trajectory, Gubrium (1987) argues that the discourse of Alzheimer’s disease uses developmental language (p. 1) to allude to the different stages associated with this illness. This happens even though everybody affected by the disease has a unique illness trajectory and can therefore adjust to the diagnosis in different ways. Gubrium (1987) also claims that people who receive this diagnosis go through a variety of critical periods as they transition from one stage to another. When explaining how illness can affect our thoughts on where we are heading, Orona (1990) uses the expression existential coordinates to allude to the markers that alter a person’s “understanding of his/her past and future, and of his/her identity” (p. 1253). Thus, a dementia diagnosis is assumed to challenge who we are because it affects the ways in which we think about our possible selves, i.e. “individuals’ ideas of what they might become, what they would like to become, and what they are afraid of becoming” (Markus & Nurius, 1986, p. 954).

It is worth noting that dementia affects not only those who receive the diagnosis but also those who are their primary caregivers. This is why it is important to acknowledge “the experience as a shared journey, albeit non-linear, and subject to the vagaries of the unpredictable illness progression” (Gillies, 2012, p. 674). The concept of the trajectory is therefore used to allude to both the journey that the person with dementia undergoes (i.e. the illness trajectory, e.g. Keady et al., 2013) and the journey that a family caregiver embarks on when accepting the responsibility to become that person’s primary caregiver (i.e. the care trajectory, e.g. Gillies, 2012). We tend, for example, to talk about Alzheimer’s disease in terms of the different stages with which this illness is associated (cf. Hayter, 1974; Reisberg, 1984) and often take for granted that these stages are considered when caring for a person with this diagnosis (Wilson, 1989). There are also models that explain the stages over subjective experience that those living with dementia tend to undergo (e.g. Keady & Nolan, 1994), and models that describe the impact that these iterative stages can have on family caregiving (e.g. Wuest, Ericson, & Stern, 1994).

Most descriptions of the trajectories associated with a dementia diagnosis tend, in other words, to differentiate between what happens to the person with dementia and what happens to his/her family caregiver. However, there is research that shows that this differentiation may obfuscate more than it clarifies since the intimate relationships that persons with dementia have with their family caregivers are inherently important to maintaining a sense of self in dementia (cf. Davies & Nolan, 2008). There is, in other words, a growing interest in dementia studies that focuses on how subjective experience is shaped by the personal relationships that persons with dementia hold dear (Ablitt, Jones, & Muers, 2009; O’Shaughnessy, Lee, & Lintern, 2010) and on the impact that such relationships have on the way in which dementia is understood (Hellström, Nolan, & Lundh, 2007; Keady, 1999; Quinn, Clare, Pearce, & van Dijkhuizen, 2008). Therefore, this article departs from the growing interest of dementia research in couplehood and sheds light on an aspect of the illness trajectory that has very seldom been explicitly addressed, i.e. how the future is understood by couples living with dementia.

Future life with dementia: A review of the literature

The first thing that needs to be clarified is that very few studies have actually focused on the topic addressed here per se (the exception being the studies by de Boer, Dres, Jonker, Eefsting, & Hertogh, 2012 and Moniz-Cook, Manthorpe, Carr, Gibson, & Vernooij-Dassen, 2006). There is, in other words, almost no research on dementia that has explicitly explored what understandings of the future persons with dementia and their spouses have. However, there are several studies that have implicitly dealt with aspects of the future, including most studies that aim to describe the subjective experience of being diagnosed with dementia and living with the disease, both from the perspective of the person with dementia and of the family (e.g. Lin, Macmillan, & Brown, 2012; Steeman, Godderis, Grypdonck, de Bal, & Dierckx de Casterlé, 2007). Dementia research that has focused on different aspects of identity (e.g. Caddell & Clare, 2011), hope (e.g. Duggleby, Williams, Wright, & Bollinger, 2009; Wolverson, Clarke, & Moniz-Cook, 2010), grief (e.g. Frank, 2008) and ambiguous loss (e.g. Dupuis, 2002) has also implicitly touched upon the topic at hand. These studies have all taken for granted that the future is a dreaded part of the illness trajectory we mentioned earlier.

The diagnostic disclosure of dementia is assumed to activate thoughts about future plans, both for the people with dementia and for their family members (e.g. Derksen, Vernooij-Dassen, Gillissen, Olde Rikkert, & Scheltens, 2006; Hellström & Torres, 2013; Samsi et al., 2014; Vernooij-Dassen, Derksen, Scheltens, & Moniz-Cook, 2006). People who receive a dementia diagnosis are expected to worry about not being listened to in the future, about increasing disability, and about the prospect of having to move to a care home (Husband, 2000). A recent systematic review on subjective experiences (von Kutzleben, Schmid, Halek, Holle, & Bartholomeyczik, 2012) – which did not focus on the future but which revealed interesting things when alluding to how persons with dementia understand the future – showed that they try to adjust to the course of the disease by trying to continue their current activities as long as possible in order to maintain normality. However, they express worries about the future, especially about envisaged loss of abilities. It is worth noting here that even though most persons with dementia expect losses of functions and abilities over time, there are some that express ambiguity regarding whether or not the disease will bring about changes in their identity (cf. Caddell & Clare, 2011; MacRae, 2010). Continuing former and sometimes new activities has therefore been found to be a way to create feelings of continuity in earlier stages of the dementia disease (Phinney, Chaudhury, & O’Connor, 2007).

The focus of the two studies that have addressed the future in an explicit manner revealed some interesting things that are worth noting. In an interview study with older people and their family members (Moniz-Cook et al., 2006) which aimed to explore understandings of dementia prior to assessment and diagnosis, the meaning of dementia was discussed as being characterized by losses over time and concern for the future. The other interview study (de Boer et al., 2012) that explicitly addressed the future is a study of people with early-stage Alzheimer’s disease which focuses on the value of advance care planning. The findings of this study suggest that feelings about the future tend to swing between hope and fear, which is why they talk about “living one day at a time”. Planning for the future was not, in other words, something that the people interviewed paid too much attention to. Both of these studies lay the groundwork for the analysis that we have conducted. It is worth noting that neither of these studies examined how persons with dementia – at different stages of the illness trajectory – view the future.

Another study that has informed the analysis of this study is an interview study with women with dementia living alone (de Witt, Ploeg, & Black, 2010) in which the participants claimed to dread the time when their condition would deteriorate. This study did not address the future in an explicit manner but the women interviewed used expressions such as “as long as I can”, which suggests that they had an understanding of the future which could be regarded as a horizon (i.e. the future is what comes after I am no longer able to do x, y and z). This study suggested therefore that some persons with dementia recognize that there would be endpoints in time when they would no longer be able to stay at home.

With regard to caregivers, research has found that the dementia journey is characterized by swings between a sense of loss and a struggle for the maintenance of continuity (Gillies, 2012). This journey ends when formal support steps in (Lin et al., 2012). Thus, the primary focus of studies of caregivers’ trajectories has been the stress/burden model (Montgomery & Williams, 2001), which is why there are numerous studies on the area of loss and grief (e.g. Dupuis, 2002; Frank, 2008). The specific illness trajectory associated with dementia is, in other words, often described as a journey that most people fear. O’Shaughnessy, Lee, and Lintern (2010) have found, in addition, that one way to handle the caregiving process is to appear uncertain and use expressions of ‘not knowing' when talking about the future. In light of the fact that research has shown that couples living with dementia adjust their lives (Robinson, Clare, & Evans, 2005) as they make sense of the disease and negotiate the meanings that they attach to their experience (Davies, 2011), it seems interesting to ask how couples living with dementia understand the future. Therefore, at the core of our interest lay the following questions: How are understandings of the future shaped by persons with dementia and their spouses? Are the persons with dementia’s understandings of the future similar to those of their spouses? And are understandings of the future dependent upon the stages that are associated with this illness trajectory?

Method

The project upon which this article is based aims to shed light on the understandings and experiences of those living with dementia, their next of kin, as well as their formal caregivers. In total, 67 people were interviewed (28 persons with dementia, 30 next of kin and 9 formal caregivers) including 24 couples. In this article we focus on how couples living with dementia understand their future. Hence, the analysis will not include formal caregivers since their task on the future is not relevant enough for the task at hand. Four couples did not refer to the future at the length necessary to conduct an analysis so this article is based on the 20 couples who did. Therefore, this article is based on the analysis of interviews with 40 informants. The 20 informants with dementia were all able to express themselves verbally. The Regional Ethical Review Board at Linköping University in Sweden gave ethical approval for the project (Dnr: 104-09).

Sample criteria and characteristics

The criteria for inclusion in the project were that the person with dementia had to have a diagnosis and also needed to have been informed about it through formal services. The recruitment of informants took place through two memory clinics. Table 1 summarizes the sample characteristics. The mean age of the person with dementia interviewed was 71 years (range 59–85). The most common diagnosis was Alzheimer’s disease. The stage of dementia disease was established according to the Functional Assessment Staging Test (FAST) (Reisberg, 1988), wherein the stage of dementia was assessed on a scale of 1–7 (including the sub-stages 6 a-e and 7 a-f), where a higher figure denotes lower functional capacity. The stage was assessed by the first author, who is a nurse and has long experience working with people with dementia. The participants’ scores on the FAST scale varied from 2 to 6 a (FAST 2 = n9, FAST 3 = n3, FAST 4 = n4, FAST 5 = n1, FAST 6 = n1, FAST 6 a = n2).

Table 1.

Sample characteristics for the person with dementia grouped according to findings.

Informants pseudonyms N = 20	Age	FAST score	Diagnose 1) <6 months 2) 6–12 months 3) 1–4 years	Individual/ joint interview	Active/ passive during joint interview	Formal support
Henry	59	3	3	Joint	Active	None
Per	77	4	3	Individual	–	None
Karl	74	2	3	Joint	Active	None
Gunnar	62	2	2	Joint	Active	None
Susanne	68	2	2	Individual	–	None
Martin	63	2	1	Individual	–	None
Christel	70	2	2	Individual	–	None
Torsten	83	6 a	3	Individual	–	Day care

Oscar	80	4	2	Individual	–	Day care/ respite care
Gunilla	80	5	3	Individual	–	Day care
Olof	85	4	3	Joint	Passive	None
Gullan	74	2	2	Joint	Active	None
Karin	61	3	3	Joint	Active	None
Birgitta	69	2	2	Joint	Active	None

Fredrik	69	2	2	Individual	–	None
Sara	70	6	3	Individual	–	Day care/ nursing home
Johan	61	6 a	2	Individual	–	Day care
Kerstin	75	2	2	Individual	–	None
Kristin	70	3	1	Joint	Active	None
Eva	79	4	3	Individual	–	None

Data collection and analysis

The interviews were structured around the following themes: the dementia disease; the family and social network; the home and surroundings; a typical day; their health and current as well as perceived future support. The interview guide was, however, semi-structured and allowed for the flexibility needed when trying to adjust to individual informants’ trains of thought. This means, for example, that when the theme health was brought up during the interviews we embarked in lines of questioning that were sensitive to exploring the informants’ understandings of the future as these relate to health-related issues. In other words, all of the themes explored during the interviews were talked about both in terms of the here and now as well as in terms of what the future holds. Hence, that in this study we have analyzed the entire interview and not just the parts concerned with future support. The analysis is, in other words, based on the holistic understandings of the future that were voiced throughout the interview. Each informant was interviewed once in a location of his/her own choice; at their home, at their day care center, or in their work place. Additionally, the informants were able to choose between an individual or a joint interview (see Table 1). All couples were visited in their home even if not all of the interviews took place in this setting. The interviews lasted between 18 min and 2 h, and were recorded and transcribed verbatim.

Worth noting is that we have not imposed a coding scheme on the data. Instead, we have departed from a series of steps designed to shed light on the understandings of the future that the informants conveyed during the interviews. The first step of analysis involved the identification of the topics that were discussed when understandings of the future were verbalized. Thus, Table 2 addresses the question: which activities were mentioned when understandings of the future were verbalized? This table is based on all of the activities that were mentioned when each and every one of the informants verbalized their understandings of the future during the course of the interviews.

Table 2.

Table on types of activities brought up when discussing the future.

Informants pseudonyms N = 20	Examples of activities
Henry & spouse	Exercise, visit the town
Per & spouse	Take a walk, go bowling, and take care of their dog, garden and house.
Karl & spouse	Repair things in the house, organize documents, driving.
Gunnar & spouse	Travel abroad, take care of the house, driving
Susanne & spouse	Meet with friends, travels, take care of their house, garden and sailing boat.
Martin & spouse	Travel abroad, retirement within two years, take care of their house, driving.
Christel & spouse	Make genealogical research, exercise, taking care of the summer house, doing needle work, travel, moving to a smaller house or flat
Torsten & spouse	Move to care home
Oscar & spouse	Write his life story, take walks, play golf
Gunilla & spouse	Go to concerts and exhibitions, visit relatives
Olof & spouse	Visit their summer house, go to theatre, and take walks.
Gullan & spouse	Household chores, support relatives, take walks.
Karin & spouse	Learn a new handicraft, take care of their son’s garden, baby-sitting, and listen to audio books, travel abroad, driving.
Birgitta & spouse	Folk dance, take walks, healthy eating, exercise.
Fredrik & spouse	Driving, handle the accounting, selling the house.
Sara & spouse	Celebrating her birthday, hair dresser, visiting parents.
Johan & spouse	Buy a dog, travels, selling the summer house, plans for additional support, and plan for a life alone.
Kerstin & spouse	Gardening, knitting
Kristin & spouse	Exercise, walks with the dog, participate in support groups, baby-sitting
Eva & spouse	Baking, dancing.

The second step of the analysis involved the systematization of the topics identified per interview in order to reach a preliminary understanding of what each and every one of the informants expressed with regard to the future. In this part of the analysis we focused on whether or not there were discrepancies between the understandings that were voiced by the persons with dementia and those expressed by their spouses. During the third step of analysis we coded each of the interviews on the basis of the variety of topics that were deemed to be relevant for this study. Once the interviews were coded, we proceeded – in accordance with Silverman’s (2006) guidelines – to identify how these topics were interrelated to one another for each of the informants. The fourth step therefore involved looking for the overarching themes that these various topics shared in common per couple. Table 3 is based on the results of this step of the analysis (cf. Miles & Huberman’s 1994 discussion of how tables can be used to display data). Five overarching patterns were identified in this step, and these patterns are the focus of the first part of the findings section.

Table 3.

Patterns of understandings of the future found in data.

Informants pseudonyms N = 20 dyads	The couple agreed on its understandings of the future (regarded it as negative)	The couple disagreed on its understandings of the future (the person with dementia regarded it as positive while the spouse regarded it as negative)	The couple disagreed on its understandings of the future (the person with dementia regarded it as negative while the spouse did not deem it worthy of discussion)	The couple disagreed on its understandings of the future (the person with dementia did not deem it worthy of discussion while the spouse wanted to discuss it)	The couple’s understandings of the future was unknown (they did not discuss it during the interview(s))
Henry	X
Per	X
Karl	X
Gunnar	X
Susanne	X
Martin	X
Christel	X
Torsten	X
Oscar		X
Gunilla		X
Olof		X
Gullan			X
Karin			X
Birgitta			X
Fredrik				X
Sara				X
Johan				X
Kerstin					X
Kristin					X
Eva					X

The fifth and final step in the analysis focused on the specific time-related expressions which we noted to be important when understandings of the future were being formulated (such as “not yet”, “still” and “as long as”). This step of the analysis was informed by de Witt, Ploeg, and Black’s (2010) findings regarding the use of the expression “as long as I can”. In order to avoid jumping to easy conclusions, we counted how many times such expressions were used by each of the informants. We did this to see if there was a relationship between the number of expressions used and the FAST scores of the person with dementia. Our original impression was that these were related and so we finalized our analysis by tentatively exploring the relationship between these expressions and other sample-related information. Thus, in the last step of the analysis we followed Silverman’s (2006) recommendations and shifted our attention from the “what question” (i.e. the different understandings of the future that the analysis revealed) to the “why question” (i.e. potential explanations for these differences). It is for this reason that in the second part of the findings section we will explore – albeit tentatively – the specific patterns that emerged between the different understandings of the future that were revealed (Table 3), the number of expressions (such as “not yet”) that were used by both the persons with dementia (Figure 1) and their spouses (Figure 2), and the sample characteristics (Table 1). In order to guarantee the trustworthiness of the findings we used peer-debriefing sessions in which the second author acted as peer to the first author who was the primary coder (cf. Creswell, 1998). In addition, we also looked for disconfirming evidence (cf. Silverman, 2006) in order to ensure that the findings hereby presented do justice to both individual understandings as well as the couples’ perspectives on the issues at hand.

Figure 1.

Number of expressions for ‘not yet’, etc. references to disease trajectorv (person with dementia only).

Figure 2.

Number of expressions for ‘not yet’, etc. references to disease trajectory (spouse only).

Findings

As stated in the methods section, one of the steps of analysis concerned the identification of time-related expressions utilized when referring to the future. The first thing worth noting is that the informants expressed their understandings of the future by alluding to the activities they were still able to perform or the worries they had yet to face (see Table 2). This means that expressions such as not yet, as long as and not right now were constantly used in most interviews (the exception being the interviews with persons with high FAST scores; an interesting finding in itself which will be addressed later). In the following the findings regarding patterns of understandings of the future will be presented (see Table 3). Toward the end of this section we will venture into exploring whether or not those that exhibited the different patterns revealed shared anything in common. We will do this to explore – albeit tentatively – whether the understandings in question follow a trajectory of their own.

Different understandings of the future

Five different patterns emerged in the way that couples understood the future, whether they agreed or disagreed in this respect, and whether they used positive or negative expressions when verbalizing their understandings. All of the sub-titles used in this section except the last one allude to these patterns.

The couple agreed on its understandings of the future (regarded it as negative)

As shown in Table 3, agreement between couples over the view of the future as being predetermined and rather gloomy was the dominant understanding found in the data. However, this conformity was expressed in different ways: some voiced their negative understandings in a matter-of-fact way, and they did not seem to influence their everyday lives to any great extent, while others seemed to be very bothered by the understandings of the future that they had. Henry, Per and Karl (and their spouses) seemed, for example, to have a relatively calm take on the future while Gunnar, Susanne, Martin, Christel and Torsten (and their respective spouses) seemed to be anxious about what the future held. It is worth noting that Per and Karl (and their spouses) – who did not seem to be too anxious about what awaited them – had a close relative who had the diagnosis as well. The impression we got was therefore that they seemed to rely on these experiences as compasses that guided their understandings. Thus, even though they seemed to understand what lay ahead and regarded the future in negative terms, they did not dwell on this during the interview.

Per and his wife agreed, for example, that he would eventually be less competent in handling his everyday life. Per’s wife had recently suffered from cancer, and this life-threatening disease seemed to have made them both think about their common future. Per hoped that his wife would outlive him since it would be hard to manage without her. It is also worth noting that in addition to Alzheimer’s disease, Per had diabetes and needed insulin several times a day (a routine he needed to be reminded of by his wife).

Henry and his wife – who also seemed to be quite matter-of-fact about the future even if they regarded it as gloomy expressed themselves rather eloquently when they verbalized their understanding of the future as follows:

Henry: I can probably phrase it like this, we haven’t been waiting around for me to lose it completely; we have been busy with other things and have not therefore planned anything special. We will deal with it once it happens. It will happen as it happens … there really isn’t anything we can do about it.

Spouse: We have also been traveling a lot so are very glad that we have been able to do that.

Henry: We haven’t saved that for retirement.

Spouse: No we haven’t. We have now acquaintances that are in the midst of traveling here and there but we, we do not have that need any longer. (Joint interview with Henry & his wife; rows 108–114)

This couple – and the others who shared this specific take on the future – seemed to be trying to make the most of their days and were content with their life, even though they took for granted that their days as they knew them were in some ways limited. These couples agreed, in other words, that the disease had already changed their lives and took for granted that it would continue to do so in the years ahead. It is also worth mentioning that Henry thought that if he was attentive enough to new and unpleasant symptoms related to his dementia disease, he would be able to adjust to them and could perhaps reduce their future impact on his everyday life. However, he and his wife talked about the fact that they expected that not all symptoms would be manageable in the future and they anticipated disagreeing about the best way to handle them as time progressed. The following excerpt shows how the couple acknowledged possible future symptoms:

Interviewer: Have you two talked about the fact that there may come a time when the two of you do not agree on symptoms. I mean that one of you will experience one thing while the other may experience something else.

Henry: No we haven’t really talked about it that much but we are fully aware of that, we are.

Spouse: Yes.

Interviewer: I ask because you both seem so open about it. I sort of feel as if …

Henry: Yes, we are fully aware of what the future holds.

Spouse: Yes, the future … but even now I cannot say if we have reached that stage./ … /

Henry: That is what can be a bit scary. I mean those situations one can end up in which one cannot control. In the information we received it said that one may start yelling and screaming and acting up, so that is a bit strange. I think that seems …

Spouse: It is very frightening. (Joint interview with Henry & his wife; rows 433–451)

Thus, although they anticipated a “scary” and “frightening” future, they tried to prepare for the deterioration that they expected would happen as a way to ameliorate its effect on them. Thus, even though they had a similar understanding of the future when the interview was conducted, they acknowledged that they could end up having different views on the situation (and on occurring symptoms) as time passed.

As stated earlier, Gunnar, Susanne, Martin, Christel and Torsten (and their spouses), voiced a fear of the future just as Henry, Per and Karl (and their spouses) did. However, they seemed to be anxious about it. Their stress seemed, in other words, to be about the time they would lose as the future got closer. They seemed to want to ensure they did not waste time and seemed in a hurry to realize dreams they had not yet fulfilled. Henry, Per and Karl (and their spouses) shared, in other words, their negative take on the future but did not seem to be in the same kind of a rush as Gunnar, Susanne, Martin, Christel and Torsten (and their spouses). It is also worth noting that those who expressed being stressed about potential lost time also expressed a desire to avoid thinking too much about the future. Gunnar, for example, said that when he received the diagnosis he started to worry about the possibility of having to move into a care home. Thus, although he tried to focus on what he was still able to do, he voiced concern for what the future held. This was the case even though his everyday life had not actually changed that much since he had been diagnosed:

Gunnar: But of course it isn’t funny, that day when one has to go into an institution, I mean. That is one of the things that one dreads.

Interviewer: Do you think about the future then?

Gunnar: No, I have stopped doing that.

Interviewer: But still you say that …

Gunnar: I did so for a while but I have gotten over it; whatever happens will happen. I am feeling well I must say. (Joint interview with Gunnar & his wife; rows 190–196)

Here we see how Gunnar concentrated on the fact that he currently felt well and therefore did not need to worry about being institutionalized just yet. He and his wife made plans for trips abroad and at the time of the interview they had booked a flight to China. However, he feared what lay ahead, as did the rest of those who – in agreement with their spouses – expressed understandings of the future that were negative.

Martin described his disease as “creeping up” on him, a disease he and his wife assumed would eventually catch up with him. It is worth noting that Martin had been told by his general practitioner that he could expect to live about 15 more years. The following quote alludes to this and the understanding of the future that this timeline seemed to shape:

Martin: And the fact that we look forward maybe so long as we, yes so long as one has strength and understands what one is doing. But soon we will try to take another trip, to go out into the world.

Interviewer: Of course.

Martin: And after that, there is no point.

Interviewer: No but …

Martin: It may be a matter of 3-15 years as they said. They may, of course, be wrong but one doesn’t know that. (Individual interview with Martin; rows 210–216)

Martin and his wife returned to this timeline on numerous occasions throughout the interviews. They seemed to regard their life in terms of the situation before and after the timeline. The situation before being associated with the active life one could still have before the disease “crept up” on them to the extent that there would be “no point” in engaging in certain activities (see Table 2 which lists the activities mentioned). It was of interest that Martin’s father had been suffering from Alzheimer’s disease when he died, and Martin could very vividly recall how sad he felt towards the end when his father did not react when they visited him at his care home. Martin seemed, in other words, to expect the same fearful future within the next 15 years. Martin thought, in other words, that the problems would start closer to the start of the 15 year timeline he had been given whereas his wife took for granted that they would “creep in” gradually. She said, for example, the following about time:

Interviewer: Yes, then, how long do you think you will be able to manage, I mean with this illness?

Spouse: In all honesty it is hard to say since I have such a hard time grasping how it will be … some illnesses progress in chunks so that there are big changes that take place sometimes but I get the feeling that that won’t be the case here, it will be more gradual and I imagine that the changes will occur in those areas where we are already weak if I may say so. If one is the forgetful with keys, I guess that will certainly become worse but I have such a hard time imagining how it will be. And of course I sometimes think that OK “two years” but then I think of how it has been as far as memory changes are concerned and … (Individual interview with Martin’s wife; rows 161–167)

Thus, this couple shared a negative view of the future, but they approached it in slightly different ways. According to his wife, Martin thought that he was going to live up to 15 years rather unchanged in his dementia, while she understood the process as a gradual deterioration. She was convinced that over time, she would have to become completely responsible for managing their household and lives, and had started to prepare for this situation.

Susanne and her husband expressed almost the same struggle as Martin and his wife did. They too seemed, in other words, to be “living in a hurry”. Thus, even though not all of the informants explicitly expressed that they anticipated years of lost life or lost years of living as independent individuals, their understandings of the future seemed to be related to the assumption that there was a deadline to their lives as they knew them now and that their future held scenarios that were the complete opposite to the able everyday lives they lived at the moment.

Torsten, who was the oldest informant in this pattern, had been living with the dementia disease for some years when we interviewed him, and was actually at the point where moving into a care home was not in the distant future any longer. His wife’s health was deteriorating as well, and she had started to think about applying for an apartment at a group home for persons with dementia since she could not envision being able to care for Torsten in the future. Torsten knew this and therefore feared what the not so distant future meant. In the excerpt below, Torsten’s wife explained that he had difficulties with everyday routines and could not handle changes these days:

Spouse: All changes scare X (she mentions her husband’s name). We were watching “Kalla fakta” (a Swedish program that addresses – in a documentary-like fashion – a variety of issues) last night and they talked about an older man who had placed his wife in respite care. Maybe you watched it too?

Interviewer: Yes, I have seen it.

Spouse: Well, then … X asked: “why shouldn’t couples be able to live together in old age?” and I actually didn’t have an answer to that since I cannot say anything and that was also … and it actually doesn’t say anything that he had placed his wife in that kind of housing, that he no longer had the strength even if he had the will because it is a totally different thing (Individual interview with Torsten’s wife; rows 198–205)

Torsten’s wife returned to his move into a care home during the interview and on several occasions she mentioned the documentary on the television about a couple in the same situation; a documentary that seemed to have started a discussion about the future in their close family. She explained that one of her daughters had tried to convince her that she and Torsten should move together to a care facility for older couples, but she said that she no longer had the necessary strength to support her husband. This was something she seemed to feel very sorry about and something they were both struggling with.

Having given insights into the two different ways in which this pattern was voiced it is interesting to consider other similarities and differences. A look at Table 1 shows, for example, that the couples who voiced their understandings in a matter-of-fact manner and did not seem too stressed about what the future held (i.e. those who took one day at a time instead of hurrying ahead) were couples in which the person with dementia had FAST scores between 2 and 4 and had been living with the diagnosis for 1–4 years. Those who expressed their understandings of the future in terms of the struggle they had with the disease were people in an early stage of the disease (had a FAST score of 2 and had recently been diagnosed). The exception in this regard was Torsten who had a FAST score of 6 a and had been living with dementia for some years. Table 1 shows also that although the mean age for this group was 70 years, this was a group including both the youngest person in the sample (i.e. Henry) and one of the oldest ones (i.e. Torsten). Worth noting with regards to similarities and differences if we take a closer look at Table 2, is that the couples (except Torsten) who seemed stressed over the future brought up activities that included travels abroad (i.e. activities outside the closest neighborhood or as in the case of Torsten, a new living condition) while the couples who seemed more matter-of-fact as far as the future is concerned were couples who talked mainly about activities that could be performed close to their home.

The couple disagreed on its understandings of the future (the person with dementia regarded it as positive while the spouse regarded it as negative)

The next pattern of understandings of the future that this study has revealed is a pattern characterized by disagreement. In this pattern we find couples who do not agree on their understandings because the person with dementia regards the future in positive terms while the spouse regards it in negative ones. Oscar, Gunilla and Olof (and their spouses) shared understandings that attested to this pattern. Olof, for example, downplayed the consequences of dementia and the probability that he would experience diminished everyday competence in the future. His wife, on the other hand, gave numerous examples of alterations they had already introduced in their home in order to help him manage. She said that she made notes on daily routines for him in a calendar; for example, stating when to take a shower and change clothes. While talking about this, and instead of acknowledging this fact, Olof made a joke about the fact that his wife was making it sound as if he was going around without trousers. He seemed, in other words, very keen on dismissing the troubles that his wife was voicing and verbalized an understanding of the future that was much more positive than the one his wife seemed to have.

In a similar fashion, Oscar – who was the informant who expressed the most positive thoughts about the future – had made plans for the future, had a busy schedule with his hobbies, and told the interviewer about how he was writing his life story and was making progress with this. So while Oscar stressed all the things he was still able to do while trying to convey that the future was bright, his wife stressed all the support that he needed and the fact that she had already started to make plans to move him into a care home. The future she was dreading was, in other words, already here. Something else worth noting is that her description of Oscar’s abilities mainly used expressions in the past tense (such as “he used to be a talented man”), while Oscar expressed himself using the future tense (and said things such as “then I will write about my children and after that about myself”).

Gunilla had almost lost her orientation in time and for her it was hard to talk about an expected future, but that did not mean that she lacked a desire for it. During the interview she talked about her late mother and sister and the fact that she wanted to visit them even though they were both deceased. This lack of time orientation had an impact on her and her spouse’s everyday life:

Spouse: Yes, it is OK except for that. It has progressed for a long time now and the problem is actually her perception of reality, she remembers old memories … all memories are stored, you know and then they come out but not in the right time perspective if I may put it that way and that is what she … she talks to her mother, calls her mother’s home even though she is dead (Individual interview with Gunilla’s husband; rows 16–19)

Gunilla’s inability to handle their joint memories seemed to be a source of disagreement with and a great strain on her husband. He tried to use photos to explain who he was and alluded often to their children in order to get her on the right track as far as time was concerned. He also kept things from her mother’s funeral to make the point that Gunilla could not in fact visit her. Thus, the future, as such, seemed to have lost meaning for Gunilla already, while her husband organized her visits to the day care she attended and made careful plans for finding her a suitable care home in case the need for it arose in the future.

If we draw attention to common characteristics of these three couples we can say that it is in this group that we find the oldest informants in the sample (a mean age of 81). Table 1 shows also that these were people who had a relatively high FAST score (4–5) so the disagreement regarding understandings of the future must be understood against this backdrop. A look at Table 2 shows that the activities brought up by Gunilla, Olof and their spouses are things they planned to do together and also activities that can be performed in close proximity to their home. In the case of Oscar and his wife, they mainly talked about things they would do as individuals, not as a couple.

The couple disagreed on its understandings of the future (the person with dementia regarded it as negative while the spouse did not deem it worthy of discussion)

In this pattern we find couples who disagreed on their understandings of the future just like the previous three couples did, but who did so for different reasons. These couples consisted of dyads in which the person with dementia regarded the future in negative terms while the spouse did not seem to think that the future should be discussed. Gullan talked, for example, about the fact that her disease would have a negative impact on her and her husband’s future. She also talked at length about dreading the thought that her home – which she took great pride in keeping well-kept – would become messier as her disease progressed. In other words, she took for granted that her abilities would deteriorate as her dementia got worse. She wanted her children – who lived close to her and her husband – to support them as a couple when that time came. Her husband, however, tended to downplay the gloomy picture she painted of their future and seemed to want to steer the conversation away from the topic:

Gullan: They (she means their children) think it is sad that this has evolved this way for us. I must say that they think this way.

Spouse: But we hope that it will all progress slowly.

Interviewer: Yes, of course, but do you think about the future, how it will be if things get worse?

Gullan: Yes, I do actually. I have thought about it a lot, about how one can manage and that sort of thing, but then I think that this isn’t something one can dwell on. One must take one day at a time (Joint interview with Gullan & her husband; rows 199–203).

Just as we see here, her husband constantly used expressions such as “we must hope it [the dementia disease] progresses slowly” and therefore seemed to want to convey that the trajectory that awaited them was not one they should focus on too much. Gullan seemed to agree with him at times but also voiced much more concern about what the future had in store for her. When the topic of seeking support from their children was brought up – which happened on a few occasions throughout the interview – Gullan’s husband said that they wanted to manage on their own, while Gullan took for granted that they would need their children’s help in the future.

Another way to downplay the subject of the future was to relate the symptoms of dementia to normal aging. In the following excerpt Birgitta explains her view on how her dementia will develop, while her husband expresses his idea that the things she worries about are not perhaps related to the disease per se but to the fact that they are getting older:

Birgitta: It is a given that I will get worse and worse if I may say so. So far, I am sort of at a certain level where one can see … but there will come a time when things will start to go downhill and when that happens, one’s surroundings will be noticed in a different way.

Spouse: Well, we are getting older, we all are, and old age takes its toll. (Joint interview with Birgitta & her husband; rows 344–347)

Here we see, in other words, how a spouse downplays their problems by arguing that they are perhaps not unique since some deterioration is to be expected in old age. In a similar fashion to Birgitta, Karin talked a lot about how she distinctly noticed that her Alzheimer’s disease became worse over time and how she was constantly reminded that she was losing some of her abilities. Just like Birgitta’s husband, Karin’s husband tried to downplay her symptoms and the magnitude of the problems she was describing. He stressed the positive things instead, and that seemed to be causing a degree of friction between them.

A look at Table 1 shows that these three women had a low mean age (68) and a relatively low FAST score (2–3). Once again we see that the people who expressed similar understandings of the future shared demographic characteristics as well. They also talked about the same kind of activities when talking about the future, namely more practical activities such as household work, exercise or gardening.

The couple disagreed on its understandings of the future (the person with dementia did not deem it worthy of discussion while the spouse wanted to discuss it)

This pattern was the opposite of the one presented in the previous section. In this case it was the person with dementia who did not want to share their thoughts about the future, while the spouse seemed to be frustrated about the fact that they thought they needed to address this. Johan’s wife talked about the fact that Johan had made plans for a car trip to Italy and that she couldn’t get him to discuss the fact that she might not be able to drive all the way herself. Johan was not allowed to drive anymore so she had decided, without Johan’s consent, that they should visit friends in the south of Sweden instead. Johan’s unwillingness to discuss their future plans made it difficult for them to handle not only their everyday lives but also their future.

Fredrik’s wife brought up the subject of their living arrangements. She wanted to sell their house and move to a flat, but Fredrik was not keen on the idea of moving. He thought that they could still manage their house and their garden even though that was not really the case. His inability to accept the fact that his abilities were changing prevented them from addressing the future in an open manner. However, contrary to what may be expected, Fredrik’s wife did not seem to think that she needed support either, even though she could also see that the situation was not that easy to handle anymore:

Spouse: I read in the paper today that they had (she names the name of a specific care facility in her area) meetings for spouses and family members and that sort of thing but I don’t think I am there yet.

Interviewer: No, and one doesn’t feel one needs that.

Spouse: No, no.

Interviewer: You just said – “I am not there yet”– so I wonder, do you expect that things will get worse?

Spouse: Yes, I guess I do because of all of the things we have read about how it will be. (Interview with Fredrik’s wife; rows 178–187)

From this quote we gathered how she – and others like her in this group – could foresee challenges in the future yet could not bring themselves to take the necessary steps to prepare for that future in the here and now. Of course, this raises the question of whether or not her husband’s lack of interest in addressing the future also meant that she was struggling to decide where they were in the illness trajectory, whose consequences she seemed very much aware of. Thus, although she was trying to prepare her husband for the fact that diminished everyday competence was what the future had in store for him, she did not seem to think that she herself needed to come to terms with this (she was not, in other words, “there yet” as she herself stated many times).

Sara and her husband were, in contrast, beyond “there”. She lived at a care home, used the services at a day care facility during the week, and spent only her weekends at her old home. Sara did not seem to want to discuss the future either. Thus, irrespective of whether or not some thought of their situation in terms of being “not there yet” or in terms of being well beyond the “there” they all seemed to dread, these were couples who disagreed on their understandings of the future. In terms of other things they had in common it seems worth noting that these couples were comprised of persons with dementia that had a relatively low mean age (67) and two persons (Johan and Sara) a high FAST score (6 a and 6). Since these couples disagree on their understandings of the future, the characteristics of the different activities (see Table 2) for these couples are that they mainly talk about things they would like to do (or have to do) on their own.

The couple’s understandings of the future was unknown (they did not discuss it during the interview(s))

The couples in this pattern were people who did not seem keen on discussing either the subject of the future or the kind of diminished everyday competence associated with the dementia trajectory. These were all people who stressed that focusing on the here and now was preferable. Kerstin, for example, had no problems talking about her memory problems and the impact they had on her everyday life, but when asked about the future she did not seem willing to share her thoughts on it. It is worth noting that Kerstin’s mother had also received this diagnosis so we take for granted that she must have known what the illness trajectory could be like. She seemed to feel that as long as she stayed with her husband she would manage, and pointed out that his memory was actually worse than hers.

Kristin and her husband seemed to agree on how they should handle the situation (they too chose to drop the subject). In the excerpt below, the interviewer tries to introduce the theme of a possible future.

Spouse: And then we received the diagnosis in the beginning of January, I think it was about then, or no maybe it was later, but the thing is X (he mentions the name of his wife) is still very alert if I may say so, so it is.

Kristin: Yes, as long as that is the case …

Spouse: Yes, but no, we don’t actually know how the illness trajectory will look.

Interviewer: Is there something specific you are thinking of when you think of how the trajectory will be in the future?

Kristin: No, not yet because I don’t feel that I, we do things, don’t we? We go out and take walks and we are … and I go to the gym and as long as I can do that … (Joint interview with Kristin & her husband; rows 22–28)

As is clearly seen here, these were couples who tried their best to steer the conversation away from the topic. In the excerpt above we see, for example, that the interviewer tries to follow up on the introduction of the word trajectory, made by the husband, but they both choose to focus on Kristin’s strengths. Thus, even though Kristin and her husband used expressions that indicated that there was an understanding of the future that lurked in the background (they both used, for example, expressions such as “as long as”) they maintained that they did not think about the disease trajectory.

Eva and her husband seemed even less interested in what the future held. Eva said, for example, the following:

Interviewer: Can you envision the future?

Eva: No, I think“you will be alert”, I don’t know but that is how I think … I think like this, I think that it is a given when one is 80 years old that one can expect that certain things will happen to one’s body. One doesn’t know that for a fact but things will of course happen and so they will happen. There isn’t anything one can do about it if they happen since one can only accept them. (Individual interview with Eva; rows 245–249)

In this particular case we see how the person with dementia also used old age as an explanation for the problems they were facing, just like some spouses sometimes did, as we showed earlier. Thus, although these three couples dropped the subject in different ways, these were people who did not seem to want to discuss the future. In terms of demographics it seems worth noting that the three women with dementia in this pattern were all in a relatively early stage of the disease. Kristin and Kerstin had a relatively low FAST score (2–3) and Eva had FAST score 4. These couples mainly brought up activities that were connected to their home, for example providing support to their close family or gardening (Table 2).

Understandings of the future: Do they follow a trajectory of their own?

In the previous sections we have presented the patterns we discovered regarding understandings of the future. In this section we would like to take the analysis a step further and tentatively explore why these patterns emerged. As described in the introduction, expressions such as “not yet”, “as long as” and “still” could be regarded as developmental language (cf. Gubrium, 1987) which was used to allude to the illness trajectory. These expressions could also be understood as statements that explicitly convey awareness of the critical periods and existential coordinates (cf. Orona, 1990) that some persons with dementia used to orient themselves. Analyzing the usage of developmental language seems important since such expressions were used even when disagreement regarding where people were at as far as these critical periods were concerned was a fact. It is for this reason that we (inspired by de Witt et al., 2010) ventured into an analysis of the actual number of developmental expressions that the informants used during the interview (see Figures 1 and 2).

The findings from this analysis suggest that early on in the disease (FAST score 2-3) and when the diagnosis is still relatively new (i.e. up to 12 months after it is made) the person with dementia used a high number of developmental expressions. Later in the trajectory, the person with dementia seemed to stop using such expressions, while the spouse continued to express thoughts about the future in this manner.

If we relate these figures to the five different patterns that our analysis has revealed we also note the following: in the first pattern – the couple agreed on its understandings of the future (they regarded it as negative) – we find couples who used a high number of developmental expressions. In the second pattern – the couple disagreed on its understandings of the future (the person with dementia regarded it as positive while the spouse regarded it as negative – the person with dementia very occasionally used these kinds of expression while the spouse used them more often. The person with dementia in the next pattern – the couple disagreed on its understandings of the future (the person with dementia regarded it as negative while the spouse did not deem it worthy of discussion) – used a high number of developmental expressions, as did their spouses. None of the persons with dementia in the fourth pattern – the couple disagreed on its understandings of the future (the person with dementia did not deem it worthy of discussion while the spouse wanted to discuss it) –used these expressions, but their spouses did. And finally, in the pattern – the couple’s understandings of the future were unknown (they did not discuss it during the interview(s)) – we noted that the couples represented by Kerstin and Eva used a low number of expressions, while Kristin and her husband used a relatively high number of expressions.

Although the volume of data we have hereby presented is too small to suggest anything with certainty with regard to how illness trajectory may influence understandings of the future, it seems as if the usage of “developmental language” follows a trajectory of its own. More in-depth exploration of this area requires a longitudinal design. Our findings suggest – albeit tentatively – that future studies could focus on this angle of inquiry.

Discussion

The literature on dementia is filled with allusions to understandings of the future which are assumed to be shared by most people who have been diagnosed with this disease, their family caregivers and society in general (cf. Behuniak, 2011; Johnstone, 2013; Scholl & Sabat, 2008; Sweeting & Gilhooly, 1997). This is the case despite the fact that the understandings of the future that people with dementia and their spouses uphold have very seldom been explicitly addressed and even more seldom as a “shared journey” (Gillies, 2012) that couples undergo. This section explicitly addresses the answers to the research questions we posed in the literature review section while drawing attention to some of the unexpected understandings that were uncovered.

The first two questions that we set out to answer had to do with how the understandings of the future held by couples living with dementia are shaped and whether or not couples living with dementia shared similar understandings of the future. In this respect, the findings clearly show that these understandings can be shaped in different ways even if they share the common association that dementia is a disease that scares people. However, not everybody who regarded the future in a negative way seemed to be too bothered by their understandings. It is worth noting here that the study revealed five different patterns as far as the couples’ understandings of the future were concerned (and that these could be roughly divided into two main patterns: couples who agreed on their outlook of the future and regarded it in negative ways, and couples who disagreed as far as their understandings of the future were concerned).

Besides this finding and the variations in understandings that were revealed, it seems worth noting that some columns are missing from Table 3 (there are, in other words, theoretically plausible patterns that were not empirically found in this study). None of the couples interviewed – as a unit at least –regarded the future, for example, in a positive manner, even though a few of the persons with dementia interviewed regarded the future in this way. Something else worth noting is that neither none of the spouses interviewed considered the future in positive terms, nor did we find couples who disagreed because the person with dementia regarded the future in negative terms while the spouse did not. These findings are interesting since they suggest not only that the future tends to be regarded in negative ways when dementia is part of the equation, but also that it is perhaps only those who are themselves diagnosed with the disease that can regard the future in a positive way. A look at Table 3 also shows that there is no clear cut answer to the second research question that this study focused on since roughly half of the couples interviewed agreed on their understandings of the future while the other half disagreed in this respect. The exceptions of course were the couples who did not want to discuss the future (i.e. the ones listed in the last column). It is worth noting that the vast majority of the people interviewed in this study were people who regarded the future in a negative manner (the exceptions being Oscar, Gunilla and Olof, who had a positive take on the future). Strauss et al. (1984) introduced the concepts of trajectory projection and trajectory scheme in the context of chronic illness. Trajectory projection is the idea a person has about a specific illness, for example the course of a dementia disease. Strauss et al.’s (1984) work suggests that people’s views on the illnesses that abate them have an impact on how they and their families adjust to this illness. The term trajectory scheme is used, in turn, to describe how people and their families manage and make plans for how to handle the disease. Regarded in this way, one could say that our analysis has primarily – though not exclusively – focused on how our informants’ trajectory projections are shaped.

As mentioned above, the majority of the couples regarded the future as negative. This suggests that their trajectory projection is similar to societal views on dementia. Here it seems interesting to draw attention to Johnstone (2013) who has found – through the study of media, public opinion polling, law reports, homepages and academic literature – that dementia is associated with numerous negative connotations and is one of the diseases that most people seem to fear. Our findings suggest, however, that our informants’ trajectory schemes vary, both within and in-between couples. For example, some of the informants seemed to understand the future in a matter-of-fact manner and took each day as it came while others planned activities (e.g. trips abroad) that they hoped they could engage on before the dementia disease deteriorated. These were people who seemed to want to do things before this perceived ‘existential coordinate' (Orona, 1990) took place. Some informants seemed, in other words, to be operating under the assumption that their future had shrunken.

Here it seems important to note that it is not always the case that people with dementia and their spouses have the same trajectory projection and trajectory scheme as those who provide them with formal care. For example the physician who is responsible for the dementia diagnosis bases the assessment on available information (trajectory projection) and sets out a treatment/support plan (trajectory scheme) to allow the person with dementia to adapt to the situation (cf. Corbin & Strauss, 1988). The spouses of those diagnosed with dementia are usually informed about the disease trajectory based on this medical view; however the individual trajectory is unique (Gubrium, 1987).

The last question that this article aimed to tentatively address had to do with whether or not understandings of the future are contingent upon the stages that are associated with the disease. The findings suggest that this may be the case since we found clear patterns regarding who and how often allusions to the dreaded future in terms of “not yet” or “still able to” were made by the persons with dementia interviewed (i.e. those with relatively low FAST scores tended to be the ones that used such expressions the most while those who had higher scores tended to use them the least or not at all). This finding suggests therefore that the use of “developmental language” that Gubrium (1987) alluded to when describing how the discourse of Alzheimer’s disease is shaped may follow a trajectory of its own. However, this is not the case for the spouses whose understandings of the future we have shed light on since they seem (as shown by Figure 2) to continue to use this developmental language irrespective of the FAST scores of their partner. This suggests that there may be different ways in which practitioners can address discussions of the future with couples living with dementia since their usage of developmental language differs. To this end it seems necessary to point out that temporal expressions have been the focus of earlier research (cf. de Witt et al., 2010). For example, in a longitudinal study by Lindqvist, Rasmussen, Widmark, and Hydén (2008), the temporal awareness of past, present and future – as narrated by two persons with advanced cancer approaching death – was analyzed. The analysis showed that these people’s temporal awareness changed over time – the present time was dominated with severe symptoms from the body and both the past and future time had shrunken. Our findings suggest that embarking in studies about temporal expressions could be a fruitful source of information about how people with dementia and their spouses regard their trajectory projection and plan their trajectory schemes.

The contribution of this article therefore lies not necessarily in showing that couples living with dementia tend to regard the future in negative terms, this is not new, but rather in revealing that the way in which persons with dementia refer to the here and now (as well as the future) seems to be conditioned by where they are illness-wise, while the spouses of these people seem to allude to the future in less flexible ways. Their understandings of the future seem, in other words, to be more stable over time while those diagnosed with the disease seem to shift their “not yet” parameters. Our findings suggest namely that some persons with dementia seem to change their approach to the future in a similar way as a person with a severe disease approaching death seems to do. Close in time after having being diagnosed and probably informed about the expected course of the disease, some people with dementia and their spouses can imagine future losses, or project the trajectory, but over time, couples accommodate (Corbin & Strauss, 1988) themselves to the illness in different ways. The findings suggest, in other words, that persons with dementia describe their here and now in ways that take the gloomy future they seem to dread as a point of reference and that as a result of this, they operate in what we have come to call “the not yet horizon”. But while they take for granted that there is a horizon they have yet to reach, their spouses seem to focus mostly on the horizons they have already crossed. This suggests, therefore, that our understandings of dementia in terms of what Gubrium (1987) refers to as “critical periods” and Orona (1990) refers to as “existential coordinates” are in fact only useful for those who are spectators of the disease. Those who live with the disease seem, as part of the illness trajectory, to shift their understandings of what constitutes a “critical period” or an “existential coordinate” and thus may be rather uninterested in the “possible selves” (Markus & Nurius, 1986) that dementia researchers tend to use as frame of reference for their own understandings of this disease. Thus, since there seems to be a point in time when talking about the “not yet horizon” no longer fulfills a purpose, the question this raises is: what exactly are persons with dementia dreading since what is dreaded seems to be constantly changing?

Footnotes

Declaration of Conflicting Interests

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

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Ingrid Hellström is Associate Professor in Palliative Care at Ersta Sköndal University College, Stockholm, Sweden. She has a position as Senior Lecturer at the Department of Social and Welfare Studies and Researcher at the Center for Dementia Research at Linköping University, Sweden. She has a background in clinical gerontological nursing, especially in the care of persons living with dementia. Her main research interest is people living with dementia and their families in different stages of the disease.

Sandra Torres is Professor of Sociology & Chair in Social Gerontology at Uppsala University, Sweden. Her research problematizes old age-related constructs (e.g. successful aging, diminished everyday competence, autonomy, dependence and independence); sheds critical light on commonly used methods in health and social care (e.g. standardized testing, need assessment practice and case file documentation) and deconstructs some of the taken for granted assumptions that guide policy and practice for the older segments of our populations (through policy and media analyses).

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