Introduction
Of approximately 800,000 people with dementia in the United Kingdom, it is estimated that around 63.5 per cent live in private households (Luengo-Fernandez, Leal and Gray Reference Luengo-Fernandez, Leal and Gray2010). Of these, many live with or near other family members who frequently provide the mainstay of support (Knapp and Prince Reference Knapp and Prince2007). Such relationships are particularly important, enabling people with dementia to experience wellbeing, and maintain identity and self-esteem (Livingston et al. Reference Livingston, Cooper, Woods, Milne and Katona2008). Even though the condition is a ‘significant driver of demand for health and social care’ (Knapp and Prince Reference Knapp and Prince2007: 10), it has been suggested that there has been a widespread failure to support people with dementia and their families (Knapp and Prince Reference Knapp and Prince2007). Additionally, given the ‘dynamic nature of family care’ (Nolan et al. Reference Nolan, Ryan, Enderby and Reid2002: 195) and the impact of dementia upon wellbeing, there is a need to establish a body of knowledge that can inform the development of effective advice or interventions for families providing care, to enhance adaptation and prevent outcomes such as depression (Brodaty, Gresham and Luscombe Reference Brodaty, Gresham and Luscombe2007; Knapp and Prince Reference Knapp and Prince2007). Indeed, national and international guidance, and government policy on dementia care highlight the necessity of such action (Alzheimer Europe 2006; Department of Health 2009; National Institute of Clinical Excellence and Social Care Institute for Excellence 2006; Prince, Bryce and Ferri Reference Prince, Bryce and Ferri2011).
In recent years, the emergence of person-centred care and subsequently relationship-centred care (Brooker Reference Brooker2007; Kitwood Reference Kitwood1997; Nolan et al. Reference Nolan, Davies, Brown, Keady and Nolan2004) have made a significant contribution, including placing the person with dementia and their family care-givers at the centre of the development of policy and research. Consequently, research concerning the impact and experience of dementia has increased and has recently considered the impact of dementia upon relationships (Ablitt, Jones and Muers Reference Ablitt, Jones and Muers2009; Quinn, Clare and Woods Reference Quinn, Clare and Woods2009).
This relatively recent shift to a relationship focus has found that factors including shared coping strategies and the quality of the current and previous relationship influence the experience of dementia (Ablitt, Jones and Muers Reference Ablitt, Jones and Muers2009; Hellström, Nolan and Lundh Reference Hellström, Nolan and Lundh2007; Keady and Nolan Reference Keady, Nolan, Nolan, Lundh, Grant and Keady2003). However, the majority of this research is dyadic in focus; has predominantly considered spousal relationships; has rarely extended to other family members or the potential impact of dementia upon the wider family; and has not always included the perspective of the person with dementia. The few studies that have explored the impact upon other and wider family relationships indicate that dementia does affect other family members (Allen, Oyebode and Allen Reference Allen, Oyebode and Allen2009; Garwick, Detzner and Boss Reference Garwick, Detzner and Boss1994). Garwick, Detzner and Boss (Reference Garwick, Detzner and Boss1994) suggest that families absorb dementia into their collective identity, where it becomes the whole family's challenge. Furthermore, Spitznagel et al. (Reference Spitznagel, Tremont, Davis and Foster2006) have found that the wider family has a role in mediating against institutionalisation.
Research into living with other health conditions supports the suggestion that a focus upon family relationships is necessary and beneficial. This is evident in chronic illness (Fisher Reference Fisher2006; Lyons et al. Reference Lyons, Sullivan, Ritvo and Coyne1995; Rolland Reference Rolland1987; Walsh Reference Walsh1996) and in mental health difficulties such as psychosis, where it is recognised that families influence and, in turn, are affected by the impact of mental illness (Fadden and Smith Reference Fadden, Smith, Lobban and Barrowclough2009). Specifically, family interventions in psychiatry have been found to reduce the relapse rate, aid in recovery and increase wellbeing (Heru Reference Heru2006). However, it is necessary to recognise that research and interventions from other chronic and long-term conditions cannot necessarily be applied wholesale to the experience of dementia, as the condition includes specific challenges such as changes in cognitive abilities, relational functioning and roles; and an unpredictable, lengthy and changing course (Sheilds Reference Sheilds1992).
In the absence of a significant body of research which explores the impact of dementia upon the range of family relationships or the family as a whole, it is nevertheless of value to critically consider how current research might inform us further. Much of the research exploring the impact upon relationships involves in-depth, qualitative studies, and has rarely been included in systematic reviews. While not generalisable, such research creates potential for depth of understanding. This article seeks to synthesise current qualitative research exploring the interplay between dementia and family relationships where the research explicitly includes the person with dementia. The goals of this review are to illuminate what is currently known about reciprocal influences between family relationships and dementia from the perspectives of the family (including the person with dementia); and to consider the implications of these findings for research and practice.
Method
Qualitative synthesis is a relatively new approach to bringing together the findings from qualitative studies (Dixon-Woods et al. Reference Dixon-Woods, Bonas, Booth, Jones, Miller, Sutton, Shaw, Smith and Young2006). The selection of an appropriate form of synthesis was informed by the wide range of methodologies that have been used in qualitative research concerning the impact of dementia upon relationships. Accordingly, thematic synthesis (Thomas and Harden Reference Thomas and Harden2008) was selected, since it is suitable for synthesising studies using a range of epistemologies. Thematic synthesis is described as having ‘theoretical freedom [and] provides a flexible and useful research tool, which can potentially provide a rich and detailed, yet complex, account of data’ (Braun and Clarke Reference Braun and Clarke2006: 78).
Systematic search strategy
In December 2011, searches were completed through Medline, PsychINFO, PsychArticle, CINAHL, CAB, EMBASE, ASSIA and Web of Science. The search terms included combinations of Dementia OR Alzheimer's Disease AND Caregiv* or Carer AND/OR Family Relations* or Relations*, Parent Child Relations*, Marriage or Marital Relations*, Spouse, Spousal Relations*, Sexual Relations*, Child*, Couplehood, Spousal Caregiv*, Mother Daughter Relations*. No date limits were set. This search yielded 875 abstracts from which 20 were retained following review of the title and abstracts. A hand search of these articles, and the journal Dementia, identified three further relevant articles. Papers that utilised quantitative methodology were excluded, as these have been reviewed elsewhere (e.g. Ablitt, Jones and Muers Reference Ablitt, Jones and Muers2009; Quinn, Clare and Woods Reference Quinn, Clare and Woods2009).
Selection process
The 23 articles were subjected to further scrutiny against the following inclusion criteria. Articles had to be in English; from peer-reviewed publications; be qualitative or mixed method; have actively involved the person with dementia; and have a central focus upon the relationship between the person with dementia and their family member/s and the impact of dementia. Twelve papers were rejected because they did not include direct quotes from participants; they used observational methodologies; they were reviews; or did not address the relationship between the person with dementia and their family members.
Findings
The methodologies, research questions and key findings of the remaining 11 articles are outlined in Table 1. Eight had the relationship between the person with dementia and their family member as a central theme. The other three included methods and results which illustrated the participants' reactions to and experiences of dementia and its impact upon their relationships (Clare and Shakespeare Reference Clare and Shakespeare2004; Robinson, Clare and Evans Reference Robinson, Clare and Evans2005; Svanström and Dahlberg Reference Svanström and Dahlberg2004).
Table 1. Description of the 11 qualitative research studies on dementia and family relationships
Notes: PWD: person with dementia. AD: Alzheimer's disease. MMSE, Mini Mental State Examination. VD: vascular dementia. CMHT: Community Mental Health Team.
Methodologies
A range of methodologies, including constructivist grounded theory, discourse analysis and phenomenological methodologies, explicitly inform ten of the 11 studies. In-depth interviews were the main method utilised for data collection, with seven choosing to interview participants together. Eight used a cross-sectional design, interviewing participants at one point in time.
Participants
In all but three studies the participants were co-habiting couples. The three other studies involved adult daughter and mother relationships (Forbat Reference Forbat2003; Ward-Griffin et al. Reference Ward-Griffin, Oudshoorn, Clark and Bol2007) or a three-generational family (Purves Reference Purves2011). Participants were generally recruited from service providers including memory clinics. In eight studies, participants with dementia had received a diagnosis of Alzheimer's disease. In the other studies, diagnoses were dementia, mixed dementia or vascular dementia. In over half, the length of time dementia had been experienced is not clear. With the exception of two studies, the type and level of support services received by participants is not described.
Comments on quality
Each article was subjected to an assessment of quality of the research according to the 14 criteria identified by Elliott, Fischer and Rennie (Reference Elliott, Fischer and Rennie1999; see Table 2). The results of the assessment are presented in Table 3. Each article was assessed by the first author as: achieving (Y), partially achieving (P) or not (N) achieving the criteria. In order to check the reliability of this process, the second author independently rated a randomly selected sub-set of three of the papers. This process revealed agreement on 13 of 14 ratings on two of the three papers. On the third, on eight of 14 criteria one rater viewed the criterion as met where the other viewed it as partially met. Discussion between the authors was used to understand the discrepancies and arrive at agreement. Overall it was felt that the system was good enough to give a general overview of the quality of the papers, although it must be recognised that, to some extent this is a subjective process, and others might make different judgements on some of the criteria.
Table 2. Criteria for evaluation of qualitative research studies in psychology and related fields
Source: Elliott, Fischer and Rennie (Reference Elliott, Fischer and Rennie1999).
Table 3. Assessment of quality of articles
As illustrated by Table 3, the articles were generally of good quality, meeting the criteria either wholly or partially. Limitations include the lack of representation of different relationships, such as parent–child (of both genders), intergenerational families or gay relationships, and different forms of dementia. The age of the person with dementia was rarely reported, and the ethnic and cultural background of participants was not addressed in the majority of articles. A final limitation involves the predominant cross-sectional design. As dementia is a dynamic journey in which progressive changes, loss and adjustment is not a static process, a longitudinal design is perhaps more likely to illustrate the impact of dementia. The account below needs to be read with these limitations in mind.
Analysis
Thematic synthesis was applied to the text in the findings sections of each of the papers (Thomas and Harden Reference Thomas and Harden2008). This review is particularly concerned with the participants' perspectives of the impact of dementia upon their relationships, thus it was the participants' data that were given priority. Only segments of text, therefore, that included quotes of participants were subjected to coding.
The analysis involved six stages as described by Braun and Clarke (Reference Braun and Clarke2006). Stage one involved reading and re-reading the findings sections to achieve familiarity, and taking notes about possible areas of similarity and difference, and possible codes. Seven articles, for example, included quotes that alluded or directly referred to positive experiences of the relationship before diagnosis, which was noted, following which articles were examined for evidence of any contrasting references to prior negative experiences. This led to the tentative codes ‘a good life together’ and ‘disconnectedness’. Stage two involved uploading the articles into NVivo 9 (QSR International 2010), followed by line-by-line coding. As Thomas and Harden (Reference Thomas and Harden2008) advise, this involved putting the review questions to one side and staying close to the data. At this stage, 74 codes were identified. Stage three involved the development of descriptive themes. The first author printed the codes with associated quotes. The two authors then reviewed all codes and associated quotes, placing them on post-it notes, so that they could be inductively assembled into hierarchies, with super-ordinate themes identified. From this process, a super-ordinate theme of a shared history emerged, which included the two themes tentatively identified earlier as well as codes which appeared to illustrate other dimensions of this theme.
Stages four and five involved reviewing and refining the themes identified in stage three, including going back to the original data to check for confirmation or contradiction of the emerging hierarchies. Initially, for example, the theme of disconnectedness subsumed codes connected with dissatisfaction, past conflicts, and conflict and rejection, all of which seemed to be connected with negative aspects of relationship. Further exploration identified that some quotations in this group referred to the present relationship and some to the past relationship. The theme was therefore split into two, and the elements related to the current relationship were placed in a new super-ordinate theme which closely reflected Keady and Nolan's (Reference Keady, Nolan, Nolan, Lundh, Grant and Keady2003) concept of ‘working apart’ in the context of the current experience of dementia and its impact upon relationship.
In this fifth stage, four super-ordinate themes were developed and considered in relation to the goals of this review. For example, under the super-ordinate theme of a shared history, the two sub-themes, ‘a good life’ and ‘disconnected’, were consolidated. Each sub-theme contained codes which illustrated specific dimensions, ‘A good life together’, for example, included affirming current commitment because of past relationship quality, as well as identifying how past difficulties had been overcome, coded as ‘pulling through’.
Analytical themes
Four, super-ordinate analytical themes were identified: ‘a shared history’, ‘negotiating the impact of dementia upon the relationship’, ‘openness and awareness’ and ‘shifting sands’. Table 4 shows the spread of the themes across the 11 papers reviewed. Where possible, the perspectives of both the person with dementia and the spouse or partner are used to illustrate these themes. Contributions arising from the experiences of other family relationships occurred less frequently because of the limited literature addressing these relationships, but to give voice to these relationships, examples from their accounts are also included in the sections below.
A shared history
In eight articles, reference was made by participants to their relationship history, characterised by positive and/or negative feelings about the relationship and each other. Two sub-themes emerged: ‘a good life together’ and ‘disconnectedness’.
A good life together
This sub-theme primarily reflects the experience of couples. Of the eight articles, seven highlighted positive feelings concerning their shared history, reflecting that they had experienced a good life together with a strong, shared emotional bond.
Although Jane's statements were brief, such as ‘he's just the best thing I've ever had,’ they were often paired with grins and glances toward Tom, as she reached for his hand or arm to hold. (Daniels, Lamson and Hodgson Reference Daniels, Lamson and Hodgson2007: 167)
Tom made statements such as ‘she's been a wonderful, wonderful wife,’ and ‘I don't think I could have found a better match for me, because uh, we've just, everything's been agreeable and we've always got along. (Daniels, Lamson and Hodgson Reference Daniels, Lamson and Hodgson2007: 168)
Couples reflected on the commitment they had made to each other, which involved willingness to compromise in order to maintain togetherness.
Mr Martin: For better and for worse, and on and on. It was the natural, natural thing that we would do and that's what we believed in…
Mrs Martin: Well yeah. I mean we've been together long enough to sort of, at that plateau, we haven't seen things the same. But together, we also come around. We don't segregate. We don't separate. We're together. (Davies Reference Davies2011: 222)
Such reflections involved recognising the contribution that each person had made to the relationship and to each other, which in the case below provided justification for the caring that a husband was now providing for his wife.
Dawn: Oh, he thinks, thinks of everything for me, don't you love?… Dave: She's taken care of me when, you know, so she, the house was always clean, the food on the table, the kids have always been well dressed so you know, I say it's a knock for knock you know. (Molyneaux et al. Reference Molyneaux, Butchard, Simpson and Murray2012: 496)
Couples also identified that an aspect of this good life involved resolving or accommodating disagreements and willingness to let go of conflict and bad feelings.
Mrs Martin…: It's a balance and we've, at least I look at it, well if I want to be okay between us, then I just have to make sure that nothing goes between us an he does the same thing, you know. We don't go to bed with a bad attitude, you know.
Mr Martin: I think what my mom said often, she says, in a marriage you make sure by the time the sun sets, if something has happened during the day that maybe you were cross or you did something, you apologize and ask for forgiveness and if the other person, your partner, is of the same opinion, even so it hurts her, she will forgive you. Then you sleep over it and the next day is a new day. So you wipe out the old day. (Davies Reference Davies2011: 229)
Only one adult daughter–mother study (Ward-Griffin et al. Reference Ward-Griffin, Oudshoorn, Clark and Bol2007) contributed to this sub-theme, with just the daughter's perspective being quoted in the original article. This illustrated, as with the couples, evidence of a continuing emotional bond and reciprocity in the relationship:
Oh, my mother [Hazel] and I have always been good friends. (Ward-Griffin et al. Reference Ward-Griffin, Oudshoorn, Clark and Bol2007: 25)
I can sit and have a discussion with my mother about anything. She is very wise … It's a privilege to give back what I got … but I don't really feel that I've given so much than I feel as if I've learned. (Ward-Griffin et al. Reference Ward-Griffin, Oudshoorn, Clark and Bol2007: 26)
Disconnectedness
In contrast to the above sub-theme, although much less frequently, negative perceptions of a shared history were highlighted. This sub-theme was present in only three of the 11 articles, two exploring mother and daughter relationships and one exploring married couple relationships. Although less prominent, this sub-theme involved apparent absence of the emotional connectedness evident in those describing a good life together, along with evidence of past conflict and disagreement.
Barbara tells me: [about Mavis, her mother] ‘Oh yeah! She could be quite violent! … She'd throw knives, forks, saucepans, you name it she threw it. (Forbat Reference Forbat2003: 74)
Mavis: I wouldn't ill-treat them
Interviewer: Right
Mavis: Er … box their ears now and again <chuckle>
Interviewer: You would or you wouldn't?
Mavis: I would, but I- I didn't make a habit of it because I didn't believe in that, you know I think you might do them more damage than, you know. (Forbat Reference Forbat2003: 74)
This first theme, ‘a shared history’, reflects the extent to which the participants felt emotionally connected, which seemed to result in open communication, negotiation, sharing of roles and addressing challenges within the relationship. The participants linked their shared positive history with current continuing connection and commitment to the relationship. Where this sense of shared positive history was not present, for example in those mother–daughter relationships where a negative shared history emerges, mothers and daughters reflected on the difficulties evident in their current relationship. Links between past and current relationship quality are thus made in all the articles addressed in this super-ordinate theme. In those articles that did not contribute to ‘a good life’, this appeared to reflect a focus on the current experience of dementia, rather than a concern with relational history (Hellström, Nolan and Lundh Reference Hellström, Nolan and Lundh2005; Purves Reference Purves2011; Svanström and Dahlberg Reference Svanström and Dahlberg2004) or, in Forbat's (Reference Forbat2003) paper a focus on a single case only, in which there were difficulties within the care-giving relationship.
Negotiating the impact of dementia upon the relationship
All 11 articles contributed to this super-ordinate theme, and two sub-themes emerged, ‘a problem shared’ and ‘working apart’.
A problem shared
Eight of the ten articles contributing to this sub-theme addressed couple relationships. The diagnosis of dementia and the resulting challenges appeared to be viewed as something to be managed together, with participants continuing to emphasise their continued commitment to each other. Thus couples described continued expression of emotional togetherness in their relationships with each other:
Peter (PWD [person with dementia]): You've got to, I was just going to say yeah, you've got to be, you've got to stick together. Denise: Yeah, there's lots of love in this house. Peter: That's the main thing to me anyway. (Molyneaux et al. Reference Molyneaux, Butchard, Simpson and Murray2012: 490)
And although less frequently, this was also evident in mother–daughter relationships:
I notice that our relationship is very, very comfortable. Very relaxed, very, you know, mom and I are just totally in sync with one another. (Julie, daughter). (Ward-Griffin et al. Reference Ward-Griffin, Oudshoorn, Clark and Bol2007: 24)
I think my relationship with Diane is good. I depend on her quite a bit you know, and she is always there … so what more do I need? And she is very thoughtful. (Emily, mother) (Ward-Griffin et al. Reference Ward-Griffin, Oudshoorn, Clark and Bol2007: 25)
Furthermore, open communication and managing things together was a feature of couple relationships reflected in their discussions about their lives together, in this instance by the person with dementia:
Often we consult each other, but there have not been any deeper problems, there might be discussions in what way to go, and then we try to solve it together. (Hellström, Nolan and Lundh Reference Hellström, Nolan and Lundh2007: 393)
Participants also reflected upon the importance of mutual respect, appreciation and reciprocity, thus emphasising the commitment that they continue to express:
I think if every mother had a daughter like I have they'd be very, very happy … I, I just worship her. I really do. And you know, I think if, if I call her she'll say, ‘I'll be right over there mom.’ If I'm, you know, not well, she'll say, ‘I'll slip over.’ (Hazel, mother). (Ward-Griffin et al. Reference Ward-Griffin, Oudshoorn, Clark and Bol2007: 27)
In the context of their shared lives, in order to manage the impact of dementia, and maintain the relationship, participating dyads described various strategies, such as supporting continuation of valued activities:
Jim: We perhaps do them together now, I mean you have a go and then leave the easy ones for me. Pauline: That's what I tell him anyway. Jim: No, it's surprising actually that erm, I mean I was never terribly good at crosswords but now I mean sometimes we'll, or I've had a look at the one you've done or part completed and you've come up with words that I couldn't think of, you know. I mean it's remarkable really that. Pauline: Well I think it's through reading things, isn't it? (Molyneaux et al. Reference Molyneaux, Butchard, Simpson and Murray2012: 490)
In all ten articles, family members described activities aimed at enabling and maintaining the identity and functioning of the person with dementia:
When I was in the hospital, she was able to talk to the doctors and the nurses in a way that I couldn't…. Sometimes when I wasn't getting the drift, she would get that across…. She also goes to the doctor's [office] with me. She listens. She keeps it all straightened in my mind. (Margaret, mother). (Ward-Griffin et al. Reference Ward-Griffin, Oudshoorn, Clark and Bol2007: 26)
Such strategies were sometimes carried out without the knowledge of the person with dementia yet were also directed at maintaining their togetherness:
Mr Svensson: She is okay with cooking and so on, but the difficulties come when she is baking, you know. ‘Have I put in the yeast?’, then I ask her ‘tell me out loud what you put in’, because we usually help each other. I whip the eggs, and if we make cakes I make sure I am there … Interviewer: Do you still bake? Mrs Svensson: Oh yes, I enjoy that, I have done it so many years. … Interviewer: It this something that has become more difficult, to bake? Mrs Svensson: No I don't think so, I always keep to the recipe and then there are no difficulties. No I don't think so. (Hellström, Nolan and Lundh Reference Hellström, Nolan and Lundh2005: 15)
Additionally, participant accounts illustrated the need for current compromise to sustain the relationship and also to live for today, thereby keeping dementia on a different plane:
PLWD [person living with dementia]: It is nothing to be happy for, but you have to accept these conditions and do as good as possible. My wife and I don't talk about it either. As we feel that the milieu is shaped by this, but I am pleased and satisfied that it is like it is. The disease is on another plane, it doesn't have to affect others. (Hellström, Nolan and Lundh Reference Hellström, Nolan and Lundh2007: 396)
This sub-theme was absent in only one article (Forbat Reference Forbat2003) in which the central focus of the article reflected a focus on the relational difficulties experienced by a mother and daughter.
Working apart
However, although evident in only six of the articles and with less frequency, the impact of dementia upon relationships also resulted in family members experiencing significant difficulties in their relationship. The way in which this manifested corresponded closely to the theme of ‘working apart’ described by Keady and Nolan (Reference Keady, Nolan, Nolan, Lundh, Grant and Keady2003: 30), in which it is highlighted that where previous relationship quality is poor or where it has not been possible to work together in the context of dementia, the experience leads to strained relationships and consequently a feeling of entrapment in the family care-giver. Contributions to this theme arose from articles addressing couple, mother–daughter and family relationships.
This working apart was illustrated by the experience of a loss of connection in one couple relationship, where the partner without dementia described the couple's life as living in two small worlds:
Yes, despite the fact that we are living together, and we have got a lot in common, nevertheless we are lonely in a way … You live in two small worlds. You have a common world and then you have your own world besides too. (Hellström, Nolan and Lundh Reference Hellström, Nolan and Lundh2007: 402)
In a few cases this experience led to feelings of powerlessness and an inability to influence their lives.
Well, actually I have no aims anymore. Life is over. [PWD]. (Svanström and Dahlberg Reference Svanström and Dahlberg2004: 680)
Additionally, to further breakdown in the relationship:
She is very, very needy. Sometimes I just have to tolerate her but I can't be around her for long. She is so needy! You feel like there is nothing, there is nothing left for you because you give, give, give so much to her…. There are no rewards in this relationship at all and over the couple of years that she's been here, I find myself so stressed and so upset and in tears and I would just say to my husband, ‘I just wish she was dead’. (Tara, daughter). (Ward-Griffin et al. Reference Ward-Griffin, Oudshoorn, Clark and Bol2007: 24)
In the context of working apart, it appeared that rather than experiencing dementia as a problem to be shared, some family members positioned the problem with the person with the diagnosis:
No, he, he doesn't react. He doesn't care. Surely, that's why it's getting worse so quickly. If you have just a little … will to live and just a few interests and little, then, then you cope with things. But therefore it, it's probably because of that it's going down so quickly. The telly is on and he, I think X doesn't, well he sits here and in the evenings until I put him to bed and, and the telly is on but, and he doesn't touch the paper. He quits, he has quit everything. He doesn't care and that's why it goes so quickly. (Svanström and Dahlberg Reference Svanström and Dahlberg2004: 679)
Thus blaming the person with dementia for the difficulties and using various strategies to control the person, including deception and confrontation:
My sister gave her [mother] a cigarette and I didn't see it at first. I said, ‘You are not having a cigarette!’ I grabbed it out of her hand. Like I was literally jumping over the table and grabbing the cigarette. It was almost like taking something away from a baby. I said, ‘You are not having that!’ (Linda, daughter). (Ward-Griffin et al. Reference Ward-Griffin, Oudshoorn, Clark and Bol2007: 43)
I've learned a few things from Maria. She says lie to her [heh-heh] white lies. (Purves Reference Purves2011: 43)
When positioned in this way, particularly where confrontation was used, some participants with dementia exercised resistance or denial, perhaps in an attempt to maintain self-esteem and identity:
FM [family member]: I don't think you managed to pick up the use of new instruments quite as well as you did, like the … answer phone…
PLWD: Yeah, well, I was never really the technical type. (Clare and Shakespeare Reference Clare and Shakespeare2004: 217)
The absence of this theme in five of the 11 studies reviewed appears to reflect either a focus on couples whose experience was illustrative of commitment and togetherness or where perspectives were taken at a single point in time and at an early stage in their experience of dementia (Daniels, Lamson and Hodgson Reference Daniels, Lamson and Hodgson2007; Davies Reference Davies2011; Hellström, Nolan and Lundh Reference Hellström, Nolan and Lundh2005; Molyneux et al. Reference Molyneaux, Butchard, Simpson and Murray2011; Robinson, Clare and Evans Reference Robinson, Clare and Evans2005).
Openness and awareness
Nine articles contributed to the third super-ordinate theme, with seven of these concerning couple relationships. ‘Openness and awareness’ involved the extent to which it was possible for the participants to negotiate and share their understanding of what was happening (sub-theme of ‘making meaning’) or, at the other extreme, minimise it and thus deny the impact of it (sub-theme of ‘minimising’). The capacity for openness and awareness seemed to be central to the coping strategies used by participants, thus being clearly intertwined with the previous super-ordinate theme.
Making meaning
Although all nine articles contributed to the sub-theme of ‘making meaning’, those addressing couple relationships accounted for almost all of the contributions. Open communication appeared to be a central strategy for acknowledging the difficulties being experienced and finding ways of coping. Thus some couples actively engaged in sharing awareness of the challenges, even though these might be difficult conversations:
FM: I mean I'm quite hopeful that whatever deterioration there is, you know, is going to take a long time. I don't, you know…
PLWD: You might not enjoy that as much as you think, or not enjoy, you may not be tolerant.
FM: Well, I'm not going to enjoy it, am I? I don't think we're going to enjoy this.
PLWD: No, but you may not be as tolerant as that as time goes on.
FM: That's true.
PLWD: If I go sort of off and off and off, that's fine because I don't even know where I'm going or who I am, er, that's a possibility, er, but I would expect you to be pretty fed up, um, you know, if that happened. (Clare and Shakespeare Reference Clare and Shakespeare2004: 222)
Making meaning also involved developing an understanding of what was happening, including positioning dementia rather than the person as the problem:
But it's Alzheimer's. It's not like she's doing it because she's forgetful and careless. (Purves Reference Purves2011: 42)
Openness and awareness resulted for some participants in expressions of fear for the future. However, participants also responded by a process of gradual adjustment and taking each day as it comes:
In spite of their difficulties, couples described a process of continuing their lives together as they always had, and gradually adjusting and carrying on together as a couple and as individuals: ‘You adjust to it, I mean the abnormal has become normal (laughing) as you might say’. [Wife with dementia]. (Robinson, Clare and Evans Reference Robinson, Clare and Evans2005: 342)
PLWD: I don't look much ahead to be honest. I take more like one day at a time so to speak. (Hellström, Nolan and Lundh Reference Hellström, Nolan and Lundh2007: 397)
The absence of this sub-theme in two of the studies reviewed appears to reflect that both were focused upon a single case study. It is unlikely that all of the themes identified in this synthesis would have emerged in this relationship (Forbat Reference Forbat2003; Hellström, Nolan and Lundh Reference Hellström, Nolan and Lundh2005).
Minimising
In three articles (one considering the wider family relationship and two considering couple relationships), minimising was also used as a strategy to manage the experience of dementia. Denial appeared to be central to this process. This was used by either the person with dementia or the family member, to deny the emotional experience of the other person and perhaps therefore to shield themselves:
PLWD: There's no way I want to be gaga with somebody looking after me all the time, not by anybody.
FM: Well, don't worry about it. (Clare and Shakespeare Reference Clare and Shakespeare2004: 222)
In such circumstances, individual and interpersonal responses occurred, involving resistance to acknowledgement of the possible reasons for changes, the eventual diagnosis and the difficulties it brought. Resistance took the form of normalising the difficulties or actively choosing not to think about them. However, not all parties in the relationship were synchronous in their ways of understanding and coping with the changes. Thus on occasions, the strategies of resistance and confrontation were used and appeared to be challenging for both parties, particularly where this involved a denial of the difficulties experienced as a consequence of dementia:
Edith: No but, or then he says to me, ‘what did you give me? How much did you give me?’ Terry (PWD): Yeah, I'm just thinking what she's said, I'll just say, ‘what did you give me?’ Just a normal thing isn't it? Edith: No, you don't you, because you get mixed up with the change. Terry: Nah, nah. (Molyneaux et al. Reference Molyneaux, Butchard, Simpson and Murray2012: 493)
This sub-theme arose in three studies, all of which utilised a research methodology which focused on live interactions between the persons in the relationship, in comparison to the other eight studies that encouraged reflection on the relationship.
Shifting sands…
This final super-ordinate theme addresses the challenges that dementia brings to relationships. All 11 articles included in the review contributed to this theme.
Shifting responsibilities
Seven articles (one wider family and seven couple relationships) made reference to the change in roles and responsibilities that dementia brought for the relationship.
Son; …and so she can't cook anymore. I think she feels very very helpless and she looks – if you see her in that situation, she looks very helpless, she's sort of on the outside looking in as the kids are preparing stuff, and she's asking whether she can help – we try to get her to help as much as we can. (Purves Reference Purves2011: 45)
Such changes involved a complex process of negotiation involving noticing and managing the risks associated with changes in the person's abilities; negotiating the forms of help that were needed, while maintaining the identity of the person with dementia. For example, in the situation described below, the family sought to manage the process of maintaining Rose's identity as a grandmother, while believing that she was no longer able to be responsible for her grandchildren:
Colin: so you're going to come to swimming lessons with us
Rose: oh/is that right?
Colin: yeah
Rose: blast c (one), where, where was it that we had (all that) right by that little_
Colin: …um:: #name# pool
Rose: yeah
Colin: ‘cause dad's not gonna be home…
Colin: Alison/are you excited?
Alison: yay again
Colin: Grandma's coming to swimming lessons with you … ‘member? … she came swimming wi- another day too ‘member? (Purves Reference Purves2011: 49–50)
The process of negotiation appeared less challenging where the person with dementia was able to accept that they were no longer able to carry out particular activities or tasks independently:
PLWD: …But now we sit together, my wife is helping me when we work with our expenses, so she is becoming familiar with it if something happens. I am happy that my wife gets familiar with all our joint business. (Hellström, Nolan and Lundh Reference Hellström, Nolan and Lundh2007: 401)
Nevertheless, some family members found this to be a difficult adjustment to make as it entailed extra responsibility
You've got to think ahead all the time … I try and think of everything [wife]. (Robinson, Clare and Evans Reference Robinson, Clare and Evans2005: 342)
Time together and time apart
Early in the experience of dementia, the continuation of valued activities and independent time was possible and desired:
PWD: Yes, it's good. We get along well actually. We can talk to each other. He is busy with his flying club and I think he should be. He has to have his interests. So we have it well. If there is something that is a problem we can talk to each other straight off. That's nice. (Hellström, Nolan and Lundh Reference Hellström, Nolan and Lundh2007: 392)
However, particularly for couples, the consequence of shifting roles and responsibilities tended to result in couples necessarily having to spend more time together as dementia progressed, rather than being able to spend time on their own independent activities. This was evident in five of the articles addressing couple relationships.
While spending time together was viewed positively, it appeared also to have negative consequences for wellbeing. Participants expressed the need for time apart and for independence and had difficulty engaging in actions that were previously not part of the relationship. This had the potential to be a source of conflict:
Edith: But I find it very hard to say to him ‘well I'm going out’ and I leave him in this house by himself. Terry: Well I don't, I don't sit in though do I? Edith: No, you know. Terry: I just go out myself and have a walk about myself, yeah. Edith: You don't go out yourself. Terry: I do, yeah. Edith: You don't, anymore. Terry: Nah. (Molyneaux et al. Reference Molyneaux, Butchard, Simpson and Murray2012: 492)
Such conflict seemed likely, as in this example, where levels of awareness and openness were not synchronous as referred to previously.
Loss
In five articles, reflecting couples, mothers–daughters and wider families, participants' accounts appeared to reflect the loss they experienced as a consequence of the impact of dementia:
And then, and it also happened … it also happens today, that he doesn't know who, who I am. Somehow, I can't explain it … it was, did someone ask or was it what's your wife's name. Yes her name is X … no … her name is X. Yes, yes that's my wife's name too, he said then, in some odd way. (Svanström and Dahlberg Reference Svanström and Dahlberg2004: 681)
These accounts were primarily from the family member involved in caring and included losses such as memories of shared history, remembering who the spouse was, and changes in roles.
Discussion
This synthesis sought to illuminate what is currently known about the interplay between dementia and a range of family relationships, where this research has included the person with dementia as an active participant; and to identify the implications of these findings for research and practice.
Four super-ordinate themes emerged from synthesis of 11 qualitative studies: ‘a shared history’, ‘negotiating the impact of dementia upon the relationship’, ‘openness and awareness’ and ‘shifting sands’. Taken separately, some of the articles present a largely positive or negative account of the impact of dementia upon relationships. In synthesising the accounts, a more nuanced view emerges, reflected in the way that the first three themes have both positive and negative poles.
The theme of ‘shifting sands’ illustrates the particular psycho-social challenges that dementia brought for all family members in the studies. These included the alterations in roles and relationships and the resulting need for strategies to manage the impact of dementia highlighted in the second and third super-ordinate themes. Such findings have significant parallels with Rolland's (1997) work on the development of a psycho-social typology of chronic and life-threatening illnesses, in particular, indicating that it is necessary to focus upon the duration, course, degree of incapacity and outcome of the changes, the life stage at which they occur and their impact upon the relationships rather than solely on the diagnosis.
The nature and quality of the previous and current relationship appear to be important factors influencing the experience of dementia for all family members, thus supporting the value of focusing upon relationships. Dementia appeared to impact differentially upon the wellbeing of couple and wider family relationships (cf. Ablitt, Jones and Muers Reference Ablitt, Jones and Muers2009). Furthermore, it seems that the coping strategies used by family members were important in either providing support to ‘scaffold’ the identity and self-esteem of the person with dementia or indeed ‘positioning’ them in such a way as to undermine their personhood (Kitwood Reference Kitwood1997). These strategies were used by both partners and adult children in the articles reviewed.
Furthermore, this synthesis brings together research which has included the person with dementia as an active participant, a voice which has largely been absent from such research (Ablitt, Jones and Muers Reference Ablitt, Jones and Muers2009). People with early experience of dementia in this synthesis have demonstrated that they continue to work actively with others in their family to maintain their relationships; to make sense of the impact of dementia and to manage the changes that it brings. Consistent with previous research, the accounts of people with dementia demonstrate continued emotional awareness and awareness of the impact of dementia upon the family member involved in caring for them (Ablitt, Jones and Muers Reference Ablitt, Jones and Muers2010; Burgener and Twigg Reference Burgener and Twigg2002). Such insight and awareness facilitated opportunities for the relationship to continue to grow and for compromise and adjustment to take place, thus appearing to contribute to wellbeing and meaningful lives.
People with dementia contributed less to those themes where the experience of the impact of dementia upon the relationship was challenging. Where they contributed, their perspectives appeared to reflect positions of denial and resistance. This seemed to be as a consequence of a previously poor relationship; poor communication; being positioned by the other as a problem; or a lack of synchronicity in awareness and understanding, combined with the use of control by the family member involved in care-giving. Although this is less well developed in the synthesis and as such must be treated with caution, it has parallels with findings from Burgener and Twigg (Reference Burgener and Twigg2002) in highlighting that lower quality of relationship and care-giver stress predicted lower quality of life in the person living with dementia.
This synthesis has largely reflected research considering couple relationships. The contributions from couples have significant parallels with the dynamics of dementia discussed by Keady and Nolan (Reference Keady, Nolan, Nolan, Lundh, Grant and Keady2003) and the outcomes of recent systematic reviews of quantitative research (Ablitt, Jones and Muers Reference Ablitt, Jones and Muers2009; Quinn, Clare and Woods Reference Quinn, Clare and Woods2009). In particular, this review supports that, in the context of a previously positive relationship, effective adaptation to the impact of dementia involves emotional connectedness and open communication between the person with dementia and their spouse (Keady and Nolan Reference Keady, Nolan, Nolan, Lundh, Grant and Keady2003). Furthermore, ‘working together’ (Keady and Nolan Reference Keady, Nolan, Nolan, Lundh, Grant and Keady2003) involves positioning dementia as the problem rather than the person. Thus couples appeared to engage in a complex process of ‘holding’ the dementia apart from the relationship while managing its impact on their day-to-day lives. One specific contribution of this synthesis is that it demonstrates the active participation of the person with dementia in this process.
The majority of the research studies focused upon the strengths and adaptive characteristics of couple relationships, with minimal material about negative impact, or about how past conflict influences current experiences. This may reflect challenges in recruitment, as couples with a less positive relationship may be reluctant to participate and, in the context of being interviewed together, may be less willing to discuss difficulties. However, it also seems possible that the desire to move away from emphasis on burden and negativity may have resulted in less attention being given to those couples where such outcomes occur. A lesser number of articles within this review address the experience of other family relationships. However, the findings suggest that concepts such as commitment, quality of previous relationship and emotional connectedness are relevant across various relationships, as also found in previous qualitative research from the perspective of family care-givers (Piercy Reference Piercy2007).
Implications for research
This synthesis has highlighted possible directions for further research. Firstly, the more negative sub-themes (‘disconnectedness’, ‘working apart’ and ‘minimising’) occurred significantly less frequently in participants' accounts. Although small in number, the accounts that populated these themes were largely from research in which the person with dementia and their family member were interviewed separately. Additionally, the accounts were predominantly from the perspective of the family member, with significantly fewer quotations coming from a person living with dementia. Previous research has been criticised for its uni-dimensional focus on negative outcomes. However if ‘potentially negative and positive outcomes of care for both caregiver and care-receiver’ (Nolan et al. Reference Nolan, Ryan, Enderby and Reid2002: 203) are not recognised by researchers, there is a risk of shift to a similar uni-dimensional focus on positive experiences. Future research needs to give consideration to how to recruit and interview families, including the person with dementia, where relationships are less positive and to present a balanced view. To give freedom for expression of both positive and negative experiences it may be necessary to interview participants both together and apart, as well as to use methodologies which focus on live interactions between the family members involved in the research. It is also important for researchers to consider reflexively whether a desire to represent the impact of dementia in a positive light results in a lesser focus on material which contradicts this desire. Methods to achieve this include theoretical sensitivity in grounded theory (Charmaz Reference Charmaz2006; Corbin and Strauss Reference Corbin and Strauss2008).
Secondly, a limitation of current research is that the focus has been on couple relationships. Evidence from this synthesis suggests that intergenerational relationships including adult child–parent relationships are also affected by dementia. Furthermore, this synthesis has highlighted that family members across generations are actively engaged in a process of negotiation and renegotiation of roles and relationships. However, research has rarely considered how intergenerational family relationships manage and mediate the impact of dementia, in spite of evidence demonstrating that multiple generations are affected (Allen, Oyebode and Allen Reference Allen, Oyebode and Allen2009; Garwick, Detzner and Boss Reference Garwick, Detzner and Boss1994; Tolkacheva et al. Reference Tolkacheva, van Groenou, de Boer and van Tilburg2010). Further research is therefore required to provide an in-depth insight into the impact and management of dementia in a context of intergenerational family relationships.
Thirdly, existing research has largely focused upon people who have received a diagnosis of Alzheimer's disease, where the potential for maintaining the emotional relationship appeared to contribute to the positive relational experiences highlighted in some of these studies. However, this has implications for less common forms of dementia, such as frontotemporal dementia, which involves a loss of empathy (Hodges Reference Hodges and Hodges2008) and, as a consequence, potential loss of an emotional relationship early in the experience of dementia. Further research studies are required to address potential differences in adjustment that arise from the psycho-social implications of these forms of dementia for family relationships.
Fourthly, many of the studies utilised a cross-sectional design and many of the participants were early in their experience of dementia and able to participate actively in constructing and maintaining the relationship. Relationship quality and strategies to maintain the relationship have been shown to change over time, as the person finds it more difficult to engage in the conventions and strategies used previously to sustain relationships (Hellström, Nolan and Lundh Reference Hellström, Nolan and Lundh2007; Nolan et al. Reference Nolan, Ryan, Enderby and Reid2002). As dementia has a progressive and changing course, more longitudinal studies of its impact on relationships are required.
Finally, it is important to recognise that a significant limitation of current research is its focus on traditional family relationships. Family relationships are influenced by ethnicity, sexual orientation and divorce. Different family constellations and dimensions of difference remain an area for further research.
Implications for practice
Health and social care practice has tended to use the label of carer or care-giver to describe supportive family members. One implication of this research on relational aspects of living with dementia (Kitwood Reference Kitwood1997; Nolan et al. Reference Nolan, Ryan, Enderby and Reid2002) is that a move away from a wholesale use of the label carer to define the relationship may be beneficial. This would respect relational roles, with care-giving acknowledged as part of relationships but not wholly defining them.
It is widely acknowledged that multi-component interventions are necessary to address the impact of dementia and support adaptation (Elvish et al. Reference Elvish, Lever, Johnstone, Cawley and Keady2012). This synthesis suggests that there are a number of significant factors that these interventions will need to consider. These include firstly how the person with dementia can be supported to engage in relational work, given that they are active in constructing and managing the impact of dementia upon the relationship. While this may be difficult as the illness progresses, with an increasing focus on early diagnosis and intervention, this current research suggests that it is possible for people with dementia to be involved.
Secondly, how family is defined will need to be carefully considered. Families are heterogeneous, and this synthesis has identified that limited evidence exists for understanding the impact of dementia on relationships other than couples. Nevertheless research does point to the involvement of other family members and suggests that they do influence how dementia is experienced and managed (Allen, Oyebode and Allen Reference Allen, Oyebode and Allen2009; Garwick, Detzner and Boss Reference Garwick, Detzner and Boss1994; Piercy Reference Piercy2007). Thus it would be beneficial for practitioners to consider who is defined as family by the person with dementia and their significant others, and to develop an understanding of the nature of the relationship when considering interventions.
Thirdly, the assessment process may benefit from including assessment of previous and current relationship quality (Ablitt, Jones and Muers Reference Ablitt, Jones and Muers2009; Quinn, Clare and Woods Reference Quinn, Clare and Woods2009). This assessment should incorporate consideration of the way in which the illness is positioned by family members. Consistent with the concept of malignant social psychology described by Kitwood (Reference Kitwood1997), it seems possible that positioning the problem with the person with dementia may be a factor which engenders less positive outcomes.
Finally, this synthesis lends strength to the need to focus on the psycho-social consequences of dementia for the family. The way in which relationships are negotiated, roles are defined and challenges are managed are likely to be important factors in influencing how family members, including the person with dementia, live with dementia.
Acknowledgements
The authors would like to thank Dr Andrew Papadopoulos and Dr Michael Larkin for their assistance and feedback during the review process. The first author would also like to thank the Florence Nightingale Foundation and the General Nursing Council Trust for England and Wales for their generous support during the second year of her PhD. The Florence Nightingale Foundation had no influence over production of this paper. The first author planned and designed the process, conducted the literature searches, analysis and writing of the paper. The second author provided supervision and critical review of the planning, design and implementation of the process, contributed to the analysis and provided critical revision of the paper. The authors have no conflict of interest to declare.
