Experiences of loss and relationship quality in couples living with dementia

Abstract

Couples living with dementia face multiple losses in their relationship, and may experience changes in their overall sense of relationship quality. These topics have predominantly been researched from the caring partner’s perspective therefore, this study aimed to explore how couples adapt to relational losses to maintain quality in their relationship from the perspective of both partners. Using a constructivist grounded theory approach 10 spousal dyads, where one partner has a diagnosis of dementia, engaged in a joint interview. The results revealed three master themes: consolidating us, contextual positioning, and living well together, as well as an overarching theme of ‘turning to and away’. The findings are discussed in relation to theories of loss and family adaptation, and implications for clinical practice and future research are proposed.

Keywords

coping couples dementia loss relationship

Introduction

Living with dementia can significantly impact the person diagnosed and their family system. The person living with dementia may experience, alongside physical and psychiatric symptoms, destabilisation in their sense of identity (Caddell & Clare, 2011) and multiple losses; for the future, participation in meaningful activity and in their relationships (Steeman, De Casterle, Godderis, & Grypdonck, 2006). People living with dementia identify meaningful relationships, especially with family, are key to feeling they are living well (Austin, O'Neill, & Skevington, 2016), but they may have concerns about stigma and being perceived as a burden by others (Milne, 2010). For many people their spouse chooses to take on a caregiving role (Prince et al., 2014). It has been widely reported spousal care partners can experience psychological difficulties such as caregiver burden, anxiety and depression, which has been associated with reduced relationship quality (RQ) with the cared for person (Sorenson, Duberstein, Gill, & Pinquart, 2006). However some positive aspects such as feeling useful and proud as well as a deepening in the relationship have also been reported (Cheng, Lam, Kwok, Ng, & Fung, 2013). Together this suggests changes in relationships are a key part of the experience for couples living with dementia, and this may be associated with a range of psychological outcomes (Fauth et al., 2012; Rattinger et al., 2016). The importance of relationships in dementia care fits the argument advanced by Kitwood (1993) that a relational frame is essential for good dementia care.

RQ has been conceptualised to comprise behaviours (e.g. communication and physical intimacy) and emotional factors (e.g. felt trust and love) which may change due to dementia (Fincham & Rogge, 2010). Clare et al. (2012) reported care partners rated marital RQ significantly lower than healthy controls, with a trend for partners with dementia to report lower scores. However, it is unclear which aspects of RQ may be contributing to these overall changes. Abdo (2013) focused on physical intimacy and reported couples may face specific difficulties such as hypersexuality, changing preferences and consent, although many couples do maintain a degree of physical intimacy. Ablitt, Jones, and Muers (2009) reported practical aspects of couples’ relationships (e.g. roles undertaken in running the home) become imbalanced, but their emotional ties persist. The emotional bond between partners formed a pathway to RQ and emotional wellbeing which suggests emotional factors may be a key predictor of perceived RQ. However, the included articles in the review by Ablitt et al. (2009) predominantly reflected the perspective of the care partner. To understand more fully how RQ may change and factors influencing this, the perspective of people with dementia and couple co-constructions are necessary.

One area for consideration is changes in couple identity. A review by Wadham, Simpson, Rust, and Murray (2016) drew together qualitative studies including the perspectives of both partners. Their metasynthesis reiterated the importance of the relationship in dementia care and highlighted changes in couple identity, including perceived togetherness and attunement. Couples who identify less as marital partners and become less attuned may experience lower levels of RQ. It has been reported couples work to protect their shared identity through engaging in strategies such as holding on the familiar aspects of their partner which suggests couple identity may be important for the relationship (Gallogly, 2009; LoboPrabhu, Molinari, Arlinghaus, Barr, & Lomax, 2005).

Another factor influencing RQ may be losses in the relationship experienced by the couple. Noyes et al. (2010) detailed in their Grief-Stress Model of Caregiving losses in the couple relationship (e.g. companionship, communication and support) and argued that relational losses, along with losses experienced by the care partner, mediate primary caring stressors and caregiver wellbeing. The model predicts adverse outcomes, but the converse is implied in that differential responses to the relational and caregiving losses may be associated with care partner wellbeing. Evans and Lee (2014) reviewed the impact of dementia on marriage and again identified losses in the relationship and for the caring partner. These losses were represented as eroding the marital identity and the included quotes suggested lower RQ. However, as highlighted already, most of the studies only included the care partner perspective. Robinson, Clare, and Evans (2005) explored marital couples’ psychological reactions to a diagnosis of dementia and identified ‘making sense and adjusting to loss’ as an overarching theme, which mirrors the findings of Evans and Lee (2014) and Noyes et al. (2010). Additionally, the scope of this study allowed for losses experienced by the person with dementia to be captured, for instance loss of cognitive skills and roles within the home (Robinson et al., 2005). This highlights that throughout the dementia pathway different losses are experienced at an individual level and by the dyad, which may be associated with changes in RQ.

Where couples are aware of relational losses they may engage in efforts to protect their shared identity and RQ. Merrick, Camic, and O’Shaughnessy (2016) found, from interviewing seven couple dyads where one partner had dementia, couples adapt to losses by switching between focusing on the losses, and areas of the relationship and identity which remain intact. Parallels were drawn with Stroebe and Schut’s (1999) Dual Process Model, where individuals adapt to loss by oscillating between loss orientated and restorative approaches. Couples living with dementia who engage in both types of approaches may adapt better to their experiences of loss and report a relatively higher RQ. Additionally, the Double ABCX Model by McCubbin and Peterson (1983) provides a framework for couple adaptation to stressors. This model suggests adaptation is influenced by stressor characteristics, the resources and coping methods used to ameliorate these stressors, and the appraisals made. Based on this model, enhanced RQ may follow from couples’ ability to develop and use resources and coping methods to adjust to the losses, and to appraise losses in a way which reduces their emotional threat. The literature into couples’ experiences during dementia, as narrated from both perspectives, is still developing. As such the application of different theoretical models could hold particular value in explaining how couples respond to losses in order to maintain quality in their relationship.

Researching relationship factors in dementia

Previous research into relational aspects of dementia has primarily accessed the views of care partners and generalised this to the person with dementia. However, greater participation of people with dementia in research can be facilitated by addressing practical and ethical concerns (Hubbard, Downs, & Tester, 2003; McKeown, Clarke, Ingleton, & Repper, 2010). Hubbard et al. (2003) reflected on challenges from their own research experiences including obtaining informed consent and overcoming language impairment, and proposed how to approach such issues, for example combining observational methods with interview to facilitate inclusion of participants with language impairment.

Qualitative approaches often use interview methods and stage and type of dementia can influence the nature and content of information obtained. Molyneaux, Butchard, Simpson, and Murray (2011) noted in their sample participants with dementia varied in their ability to articulate their experiences in a traditional interview format. There were some broad correlations with stage of dementia, and the authors also emphasised the role of factors such as the relationship between the person with dementia and their care partner (who also participated). Cotrell and Schultz (1993) highlighted how people in the early stages of dementia could be supported through making practical adjustments such as meeting the person at home, and allowing them to determine the time of the interview. Hellstrom, Nolan, and Lundh (2007) provide a summary of issues raised by interview methodology emphasising the role of a ‘safe context’ which they argue is key in enabling the interview experience to be optimally inclusive for someone with dementia.

Together this suggests that with thought and sensitivity, the views of people with dementia can be meaningfully included in research. Advancing understanding and interventions in dementia care is likely to mean grounding research in the personal accounts of people with dementia as much as others involved in providing care. Use of qualitative methods may provide rich data on ways couples perceive and adapt to the impact of dementia on their relationship. A focus on RQ may enhance understanding of quality of life for couples living with dementia and indicate how those who experience difficulties in their relationship, for example adjusting to relational losses, might be supported.

Study aim and focus

The aim of this study was to examine couples’ joint narratives of how dementia impacts their relationship, with a focus on how they adapt to relational losses to maintain their RQ.

Method

A constructivist grounded theory methodology was employed. This allows for qualitative data to be analysed to identify pertinent themes and patterns which are developed into a theory (Charmaz, 2014). The constructivist position assumes the researcher operates from their own perspective which influences the research process. The emergent theory is therefore a construction between the researcher and participants, who themselves hold their own ‘theories’. The grounded theory approach is appropriate for this study because of its emphasis on actions and processes, and capacity to develop a theory with explanatory and predictive power.

Participants

A sample of 10 cohabiting husband–wife dyads were recruited in the South Wales and Bristol area. To participate a diagnosis of dementia must have been given, partners must be living together in the community and both had to provide consent. The capacity of the person living with dementia to give informed consent was assessed observationally by the researcher before and during the interview by attending to their ability to retain and consider information provided about the study and to their receptive and expressive language skills. Six male and four female participants had a diagnosis of dementia, with Alzheimer’s and Mixed Dementia being the most common diagnoses. The sample age ranged from 45 to 82 years, and couples had received the diagnosis between four months and five years previously. No criteria were set on age, dementia type or time since the diagnosis to achieve heterogeneity between the couples in the sample. Table 1 provides further details of the sample characteristics (pseudonyms have been used).

Table 1.

Participant characteristics.

Couple surname	PLWD gender	PLWD age	Dementia type	Time since diagnosis	Spouse gender	Spouse age	Time married
Dunbar	M	76	Alzheimer’s	12 months	F	72	51 years
Nunn	M	57	Young onset, Alzheimer’s	2 years	F	45	12 years
Hood	F	78	Not known	5 years	M	79	55 years
Kelly	F	80	Alzheimer’s	2 years	M	79	40 years
Lewis	F	54	Young onset, type not known	2 years	M	57	33 years
Thompson	M	65	Lewy body	7 months	F	63	44 years
Wilman	F	75	Alzheimer’s	6 months	M	76	51 years
Grant	M	72	Mixed	3 years	M	63	13 years
Bremner	M	80	Vascular	2.5 years	F	82	60 years
Noble	M	70	Mixed	4 months	F	69	46 years

PLWD: person living with dementia.

Recruitment

Participants responded to adverts and talks given via three charities; local branches of the Alzheimer’s Society; Nexus (a regional charity for people involved in older people’s mental health services), and Join Dementia Research (an online recruitment network for dementia research). Approximately 30 initially interested couples declined or did not respond to email contact, in almost all cases no reason was given however one couple stated they felt they had too many present demands to take part. Ethical approval for the study was granted by Cardiff University, and additionally by each charity through their internal processes.

Data collection

All participants opted to be met at home, citing pragmatic reasons and improved familiarity and comfort. During the meeting the information sheet was discussed and consent forms were completed by each participant. Demographic data was collected about each dyad, and interviews were conducted with the partners together to capture their shared narrative. A debrief was completed with participants after the interview.

The interview schedule was semi-structured and comprised seven stem questions, informed by the relationship losses identified in Noyes et al.’s (2009) literature review of caregiver grief and loss. The areas included companionship, communication, support, relationship dynamic change and hope for improvement, and acted as a starting point for exploring couples’ experiences of relational losses and their RQ. In line with grounded theory methodology the stem question prompts were refined over the course of the interviews in response to transcript analysis (Charmaz, 2014) and discussion with the research team. For example Noyes et al. (2009) identify ‘hope for improvement’ as a relationship loss, this formed the initial stem question of ‘How do you think your relationship may change in the future?’ with the prompt ‘What happens when you think about that?’, which after four interviews was amended to include further prompts: ‘Have you got a plan for how you might cope?’ and ‘How do you think you will maintain your relationship as partners?’. Both partners actively participated in the interviews which ranged between 30 and 75 minutes. The perspectives of both partners were encouraged, although in some interviews the voice of one partner, either the partner with or without the dementia diagnosis, could be more dominant.

Analysis

Following each interview the audio recording was transcribed and analysed using line by line coding. This generates initial codes which are grounded in the described experience, for example ‘Before we’d have gone to the evening performance, but now we go to the matinee’ was given the initial code ‘adapting plans to continue interests’. Subsequently focused coding was applied which moves from the first, more descriptive, level to more conceptual categories. The generation of focused codes was influenced by the relevance of the line by line codes to the research topic, their analytic significance and the reflective memos written by the researchers (Charmaz, 2014). Emerging codes and themes shaped prompts used in subsequent interviews. Data sampling terminated when the interviews were not felt to yield any additional insights indicating data saturation. Potential bias in data collection and analysis was mitigated by ‘bracketing’ of researcher beliefs and assumptions, researcher triangulation through discussion in the research team, and negative case analysis, where anomalies are identified and analysed (Ahern, 1999; Willig, 2008). Respondent validation took place with two dyads and their feedback was incorporated in the final version of the results.

Results

The analysis yielded one overarching theme and three master themes concerning how couples respond to losses in their relationship to maintain their RQ. The overarching theme ‘turning to and away’ encapsulates the dyad alternation between facing and distancing themselves from their experience of dementia. The master theme ‘consolidating us’ reflects couples’ experiences of their changing roles and identities, the refinement of their couple identity in a new context and the nature of the emotional bond between couples. The second master theme ‘contextual positioning’ captures how couples position dementia within their lives and experience different support systems. The final master theme ‘living well together’ captures how couples find meaning and positivity in their relationship, and more broadly their lives through prioritising life areas and engaging differently with the past, present and future. The themes are listed in Table 2.

Table 2.

Summary of themes.

Overarching theme	Master theme	Subthemes
Turning to and away	Consolidating us	Shifting individual identities and rolesCouple identity refinementContinuing emotional bond
	Contextual positioning	Dementia within the life stageNegotiating support systems
	Living well together	Prioritising life areasCouple positioning within time

Figure 1 displays the relationship between the overarching theme and master themes. This depicts the presence of the overarching theme in each master theme.

Figure 1.

Representation of theme relationships.

Overarching theme: Turning to and away

The overarching theme of ‘turning to and away’ reflects a broad process engaged in by couples which relates to the master and subthemes. ‘Turning to’ refers to times when couples report to engage with the reality of dementia; the impact this has on their relationship and lives more generally. For instance, one partner explained how they were being taught to manage the household finances in anticipation of when the partner with dementia could not continue this task (subtheme: shifting individual identities and roles). ‘Turning away’ reflects a distancing from the experience and impact of dementia, for instance emphasising the impact of other events such as physical health conditions (subtheme: dementia within the life stage). The process of both turning to and away was apparent in all the accounts given by participating couples.

Theme 1: Consolidating us

At an individual level partners described changes to their roles and sense of self, some of which could evoke distress. Participants with dementia described changes such as losing skills, and feeling they were treated differently by others including by their partner. Care partners reported negative changes such as feeling overwhelmed by taking on more caring responsibilities, as well as reflecting developments like becoming more patient and learning new skills. Mr and Mrs Nunn describe some of the difficult changes they each experienced:

Mr Nunn (with dementia): Losing quite a lot of things I could do

Mrs Nunn: So sort of struggling to do practical things yeah? And needing more support, that kind of thing?

Mr Nunn (becoming tearful): Uh huh

Mrs Nunn: I think for me it’s almost like the balance of power has shifted, before it was quite evenly balance but now obviously I feel I’m taking the lead more and sometimes that can be frustrating as well

Couples continued to identify strongly as husband and wife but refined their shared identity in light of their individual changes. Couples differed in how much they integrated dementia into their couple identity. Some couples who seemed to integrate it more demonstrated this by openly acknowledging the diagnosis, seeking out support groups and researching the condition. By contrast other couples seemed to direct their attention away from dementia by emphasising other identity roles such as parent or church volunteer. Some couples seemed to externalise dementia and in doing so could attribute behaviours to the dementia, and feel the core character of the partner remained: Mrs Dunbar (care partner): ‘because we’ve been together so long I know how he feels, and I don’t argue back if he says something because he doesn’t mean it, it’s the dementia’. Some couples matched in their approach, either integrating or externalising, whereas those who differed could experience conflict in the relationship as illustrated by the Lewis’ when discussing the impact dementia has had on their relationship:

Mrs Lewis (with dementia): I don’t think about it

Interviewer: You try not to think about it?

Mr Lewis: That’s her coping mechanism which I respect, initially we, I was devastated, well we both, I think we may start arguing a little bit here because we have a different view.

Couples also spoke about their strong emotional bond. This bond reflected a deep attachment cultivated over many years resulting in an ardent, ongoing commitment as highlighted by the Dunbars:

Mr Dunbar (with dementia): I know it must be difficult for (my wife) to look after me, it must be, I’m not the most patient in the world, far from it, I know my faults and then I say things and after I think ‘oh you’re a sod, you shouldn’t have said that and so forth’

Mrs Dunbar (taking her husband’s hand): And we are always there for each other whatever happens

Mr Dunbar: Yes you’re always there for me

Mrs Dunbar: And you’re always there for me

Mr Dunbar: Yeah but not so good as I used to be is it?

Mrs Dunbar: But you’re always there for me

Mr Dunbar: I know love, yes

Mrs Dunbar: There for each other

The above example also illustrates how some couples may hold an awareness of how the symptoms of dementia may pose a threat to the relationship through the potential for increased negative interactions, or upsetting the reciprocity and express their continued commitment in the face of such changes.

Theme 2: Contextual positioning

This second theme concerns how couples position themselves in relation to their stage of life and support systems. Couples tried to make sense of how having dementia fitted with their life course, and at times could be open to exploring this and at other times may try to minimise the significance of the dementia. Several couples normalised symptoms as part of the ageing process or made comparisons with current physical health conditions with a sense that a changing health status was part of getting older. Some couples also made comparisons with others, and themselves at different time points, which could result in a more positive outlook about their own situation:

Mr Lewis (care partner): It’s amazing how it’s (giving up work) worked out. But you know in a way it’s given us a focus, I’m looking at it as a, forget the diagnosis situation, we both had jobs which were pretty heavy and full on, we’ve got two children, one at university and one who will be going next year so then you’re thinking what does retirement look like … well because of the situation there is a new focus to our retirement which we never ever thought would be there. So it’s not all negative, in a way I feel quite positive about it really at this moment.

Couples varied in their experiences of different support networks. Participants’ accounts encompassed a broad spectrum from feeling well supported and validated by friends, families and professionals, to feeling dismissed, alone and overlooked. Within this there could be mixed experiences from different groups, or specific individuals within groups. Couples who felt supported described this positively, as seen by this couple who benefit from family involvement:

Interviewer: What difference do you think it makes being able to spend time with your family? What impact does that have on your relationship?

Mrs Kelly (with dementia): Well we enjoy it, we both agree on things like that

Mr Kelly: It keeps the relationship strong because we feel involved and we feel loved by them don’t we, and that’s really nice. It’s sort of like a cement which holds everybody together’.

Some couples who did not have the same level of support suggested this could bring them closer through feeling they are ‘in it together’:

Mrs Bremner (care partner): When I rang (my daughter) up and told her (my husband’s) diagnosis her first line was, ‘Come to me. Pack up, come to me. Leave it.’ And I said, ‘No, I can’t do that. It isn’t like that. You can’t just walk away from it. You’ve got to …’ But I was given the choice of walking and I refused to take it, so what we’ve done, we’ve sort of – we please ourselves basically. And if other people don’t like it, they can do the other thing can’t they’.

However, a depleted support network could be challenging for couples, for instance if they felt unclear about how to access professional support. Others alluded to a negative impact if their children were less involved, which might be for a variety of reasons:

Mrs Thompson (care partner): I see huge, huge changes ahead which is very stressful because you never, and in some respects I don’t want to talk about those to him (my husband), I don’t want him to be aware of what I know … about now and the future and the nature of the illness…my husband is completely oblivious and that’s where he wants to be so I have no-one to share it with at all apart from my son who doesn’t want to know.’

Theme 3: Living well together

This final master theme captures behavioural and cognitive strategies couples use to live well together within new parameters. Each couple described having happy lives together, they enjoyed being in the company of their partner and during the interviews displayed affection and warmth which might indicate a continued quality in the relationship. Living well together included prioritising their time to undertake valued and meaningful action, thereby acknowledging some of the limits they face:

Mrs Wilman (with dementia) we are more determined that we mustn’t put off going to see somebody or a phone, I do loads of phone calls and find that more tiring, it takes more out of me erm but we are determined … it has made us more aware that you know life is maybe a bit shorter and at (our age), it is going to be, so we have to do things.

Couples seemed to differ in what they privileged, for some this meant continuing their individual pursuits, while others undertook more together, depending on what felt most important to them:

Mr Hood (care partner): we’ve learnt to structure our lives to do the things we want to do so as I said I don’t go to watch rugby any longer, I used to do that but I don’t because it means that I’m spending more and more time out of the house and I’ve made a conscious decision not to spend more and more time out of the house, and to spend more time with her (his wife). That is all you can do.

Living well together also seemed to involve changes in how the couple relate to time. Couples described making the most of the present for example by sharing moments of pleasure such as a glass of wine in the garden. Care partners additionally described this as important for creating memories with their partner:

Mrs Thompson (care partner) I think we are building memories. I think we’ve gone through our lives, we’ve been together for 44 years and yes we’ve had lots of fantastic things happening but it feels as if now everything is concentrated into this timeslot, however long it may be, to build some special memories and to be as close to each other as we can.

Alongside this couples relinquished their longer-term future and adjusted this to a more immediate time span of days, weeks or, for some, few months. Couples seemed to enjoy having something positive to look forward to, but limited this to activities which they felt could be safely achieved. Couples also frequently reminisced about past achievements and memories which seemed to bolster their connection and provide a source of enjoyment in the present:

Mrs Grant (care partner): When we bought this place after we married, we worked on it together; we wallpapered the walls together, we did the garden together.

Mr Grant: I put a bathroom in.

Mrs Grant (smiling): He put a bathroom in. We did it all together.

However, couples who made use of these strategies and reported positives in their relationship also conveyed the challenging reality of living with dementia. This extract gives a sense of how couples may struggle with strong negative affect triggered by their experiences:

Mrs Dunbar (care partner): (my husband is) absolutely devastated and more and more depressed and every morning he says he doesn’t want to go on because of this (having dementia) …. every morning he says that which is very upsetting for me and I still go to my (activities) but lots of mornings I don’t want to go and I’m crying all the way.

Discussion

This study explored couples’ experiences of relational losses and RQ from the perspective of both partners. The results provide insights into the process by which couples adapt to relational losses to maintain quality in their relationship. This process may evolve as the person living with dementia moves into the more severe stages. By engaging in a dialogue framed around adjusting to relational losses, it became apparent couples in this sample were highly motivated to retain a core identity as husband and wife, and seemed to engage in a range of strategies which might help maintain their RQ. However, this might have reflected a sampling bias in that couples who volunteered for the study may have been experiencing higher levels of RQ. Future studies might need to consider how to include the views of couples who experience differing levels of RQ.

RQ seemed linked to a preserved shared identity, which fits with similar research in this area. For instance Wadham et al. (2016) conducted a metaethnographic review of papers including both spousal partners and identified a central theme of ‘togetherness: continuing as “we” are’ which encapsulates the strong commitment between dyads. The present study results make more apparent how maintenance of the marital identity involves accommodating individual identity transitions and refining aspects of their shared identity. While couples seemed to experience numerous shifts and increased distress they seemed able to draw back together and find a new equilibrium. This can be likened to an elastic band which is stretched under tension but remains intact and springs back. The deep emotional bond, formed over the relationship duration, seems to contribute to the shared couple identity and persists in the face of losses to other aspects of the relationship.

Couples reported an extensive range of strategies deployed to sustain their relationship. Cognitive approaches such as reminiscing and making favourable comparisons were reported by most couples, and might have had the benefit of making couples feel appreciative about their situation. This has parallels with research into gratitude which suggests helping others and habitually focusing on positives is associated with enhanced wellbeing, strengthened relationships and improved relationship satisfaction (Wood, Froh, & Geraghty, 2010). The combination of cognitive and behavioural approaches supports the findings of Hellstrom et al. (2007) and Merrick et al. (2016) who found both partners use similar strategies, although this study highlights their role in adapting to the effects of relational losses. Use of such strategies seems to help couples manage the emotional challenges they face and reinforce their emotional connection and shared identity.

The overarching theme of ‘turning to and away’ reflects a process couples engage in, and may offer support to the Dual Process Model (Stroebe & Schut, 1999) which suggests successful adaptation to loss includes engaging with the loss and taking respite through avoidance and developing other areas. This research extends this process from the bereavement literature to the field of dementia, specifically to couple adaptation to relational losses. The Dual Process Model concerns individual coping, whereas this research suggests couples responding to loss engage in a similar process, with RQ as an outcome, rather than individual wellbeing. Couples in the sample described how they orientate to their losses; through discussing changes and talking about plans they now cannot fulfil. When turning away from their losses, couples minimised the impact of dementia and adjusted their lifestyle to maintain quality of life and a sense of normality in the relationship. All couples seemed to describe both approaches however, it is less clear how much this may still be an individual process, compared to a couple effort.

The Double ABCX Model by McCubbin and Patterson (1983), which provides a framework for couple adaptation to stressors, may also be applicable. The model suggests adaptation is partly influenced by access to existing resources, and development of new ones. It was clear couples used their relationship as a resource, drawing on their mutual trust, love and companionship. Couples also developed new resources including personal qualities such as patience and resilience. Social support is identified in the Double ABCX model as a key factor (McCubbin & Patterson, 1983). In this research, several couples accessed existing support networks such as friends, family and faith groups, and developed further social support through professional services and community based dementia networks. However, several couples were reluctant to use their social support and common barriers included fear of burdening others, having experienced invalidating responses or having limited professional services. The Double ABCX model suggests these couples may struggle in their adaptation and display lower RQ. This may hold for some couples but interestingly the couples in this study who reported limited social support felt this resulted in an increased closeness in their relationship. It would be interesting to see if the impact of social support changes over time with disease progression.

Study limitations and future research

For this study no inclusion limit was set on cognitive ability and the stage of the disease was not verified clinically. The consent process and the couples’ deliberation regarding the pros and cons of participation acted as a safeguard for ensuring those without capacity and sufficient language capabilities were excluded, however during the interviews some participants living with dementia could sometimes struggle to articulate their experience. At these points care partners could interject and explain what they felt their partner was trying to communicate, therefore some views of the participants living with dementia may not have been fully articulated. However, efforts were made to support the communication of the person with dementia through using accessible language and pacing the interview (Hubbard et al., 2003). Future research could explore ways of skilling researchers and supporting people living with dementia to participate in research through devising different methodological approaches and safeguards. For example, during this study the physical interactions of couples, including use of touch and shared gaze, provided information which could help support interpretation but was not systematically recorded. Use of video recording may be a tool to utilise in future to enhance data collection and analysis.

Within the sample there was a considerable range in participant age (45–82 years) and time since diagnosis (four months to five years). Transcript analysis revealed ways these factors may affect couples’ perceptions of how dementia had affected their relationship. For instance, the two couples affected by young onset dementia highlighted some specific concerns such as taking early retirement and child care responsibilities which brought extra stressors on the relationship. However, referencing the themes against the transcripts indicated theme presence across the sample which suggests the findings can be generalised to couples of different ages and who have lived with the diagnosis for different durations. Future research could seek to explore the model themes with different populations, such as later life remarriages, LGBT couples or those who report impoverished RQ.

Conclusion and clinical implications

The relational losses experienced by couples pose an ongoing threat to their bond, causing emotional distress. In the face of these changes and uncertainty, couples strive to retain their couple identity and to continue sharing in the love, humour, respect and warmth which defines their relationship. Memory services have a responsibility to consider the emotional needs of couples, and can do so by assessing and monitoring RQ and emotional wellbeing in couples, and intervening as appropriate. The symbiotic nature of some couple relationships suggests a systemic approach in services may be required.

The national drive to identify and diagnose dementia earlier has resulted in increasing numbers of couples living with a diagnosis (Department of Health, 2015). This sample highlights the resiliencies and coping skills demonstrated by couples, however understandably couples may encounter discord during this time. The experiences of couples might be usefully shared with other couples through a peer support programme, whereby interested couples, or those identified as being at need, could be offered the opportunity to speak with couples who are willing to share their own experiences.

Footnotes

Acknowledgements

The authors would like to thank the couples who gave up their time to participate in the research.

Declaration of Conflicting Interests

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

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: School of Psychology, Cardiff University.

Anna Colquhoun is a clinical psychologist working with older adults in Cwm Taf Health Board. Anna has an interest in ACT and how this model can be usefully integrated in this clinical area. Anna conducted this research while at Cardiff University, UK.

Jennifer Moses, BSc, M Clin Psych, PhD is a consultant clinical psychologist who is interested in the healthcare applications of clinical health psychology and neuropsychology. She works clinically in rehabilitation with people who have been spinal cord injured. Her research interests are aligned with these clinical specialties. She is Academic Director on the south Wales Doctorate in Clinical Psychology where she supervises the doctoral research of trainees. She has a particular interest in post-traumatic growth and recovery across the age span.

Rosslyn Offord is a consultant clinical psychologist; lead for dementia services in Cardiff and Vale University Health Board. Areas of interest include psychological therapies and dementia and working collaboratively with people living with dementia and their supporters to improve dementia care. Rosslyn has a particular interest in using ideas from Narrative Therapy in working therapeutically, in supervision and in working with systems.

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