The lived experiences of dementia in married couple relationships

Abstract

Background and purpose

There are a growing number of couples who become affected by dementia as one partner develops the condition while the other becomes a carer. However, our knowledge about the experiences of couples affected by dementia is limited. Very little knowledge about the impact of dementia on couples has been gained in previous research. The aim of this study was to explore the dyadic perspective of dementia within a couple relationship.

Methodology: Six couples were interviewed about their experience of living with dementia. Interview transcripts were subjected to interpretive phenomenological analysis to identify themes across participants’ accounts.

Results and conclusion: The analysis revealed three themes: (i) maintaining a bond, (ii) change and adjustment, and (iii) the challenge of coping. The results highlight the importance of studying the dyadic perspective and including people with dementia in research. Couples experienced an enduring commitment to one another as they adjusted to life with dementia.

Keywords

dementia relationship dyadic perspective spouse care

Introduction

Dementia is a worldwide concern. It is estimated that the total number of people with dementia will increase to 74.7 million by 2030, and 131.5 million by 2050 (Alzheimer’s Disease International, 2017). In the UK, the total number of people with dementia is expected to increase to over 1 million by 2025, and over 2 million by 2051 (The Alzheimer’s Society, 2014). Dementia is both irreversible and progressive in nature. In the absence of cure, it is important to improve our understanding of the lived experiences in order to provide suitable supports for people with dementia and their families.

The Prime Minister’s Challenge on Dementia (Department of Health [DoH], 2012) recognises that due to increased life expectancy, there has been, and will continue to be, growth in the number of people living with dementia or caring for someone with dementia. This growth is expected to impact upon the economy and the healthcare system (House of Lords, 2013). There is a now a drive to deliver improved care to people with dementia in their own homes for as long as possible, thereby reducing unplanned care home and/or hospital admissions (Deloitte Centre for Health Solutions/Alzheimer’s Society, 2015; DoH, 2005, 2009, 2011). However, dementia costs are consistently borne by family members providing care and support on an informal basis. For instance, the Alzheimer’s society (2014) estimate that two-thirds of dementia costs are borne by the people with dementia and their families (£17.4bn per year), either in opportunity costs of unpaid care (£11.6bn per year) or paying for private social care.

Dementia can have a considerable impact on the quality of life of people with the condition, as well as on their families (DoH, 2009; NICE, 2006). As such, there is a growing demand to support people with dementia and those who care for them, usually their partner (Newbronner, Chamberlain, Borthwick, Baxter, & Glendinning, 2013). The DoH (2012, 2015) recommends that the NHS should ensure services are made available to support the couple relationship in particular. Dementia Action Alliance (2016) similarly supports this idea and is committed to improving care and support for people with dementia, carers and their families.

Caregiving takes place in the context of a relationship and therefore disease progression is likely to affect both sufferer and carer (Davies, 2011; Steeman, Dierckx de Casterle, Godderis, & Grypdonck, 2006). However, it is the caregiver who is often asked to describe how it is to live with dementia. As a consequence, people with dementia have been largely overlooked. This is changing, however, as research suggests it is possible to have people with dementia as research informants to better understand the lived experiences of people with dementia (Nygård, 2006). The experience of couples remains largely unexplored, despite the complexity and reciprocity of these relationships (Braun et al., 2009). The British Psychological Society (2008) argues not enough research is completed which obtains a balanced representation of service user and carer perspectives.

The recognition of interdependency in care relationships has replaced the concept of ‘care’ and ‘dependency’ as two distinct constructs (Fine & Glendinning, 2005); instead, it is best understood as a mutual activity. From this perspective, caregiving, in the context of marriage, is complex as caring is concerned with emotions and actions which are demanding of both love and labour. Love relations are created through love labour in relations of high interdependency. This involves work that is often pleasurable but is often also a burden (Lynch, 2007).

Steeman et al. (2006) suggest that couples enter a period of adjustment following a diagnosis of dementia, where they are required to integrate dementia into their everyday life. The quality and history of the shared relationship are also thought to influence how dementia is encountered (Baikie, 2002; Davies & Gregory, 2007; Menne, Johnson, & Whitlatch, 2008; Whitlatch, 2001). The notion of commitment has been considered to influence the dementia experience (Daniels, Lamson, & Hodgson, 2007). Another common theme within the literature is the sense of profound loss that many people experience, as well as their fear in anticipation of future losses (Almberg, Grafstrőm, & Winblad, 1997; Baikie, 2002; Robinson, Clare, & Evans, 2005).

The experience of dementia and the relationship from the perspective of couples is under researched as the majority of studies neglect the dyadic perspective. These limitations restrict the ability to gain a fruitful understanding of the impact of dementia upon the couple relationship. The present study aims to address these issues by capturing a detailed understanding of the lived experiences of dementia upon couples.

Method

This study was granted ethical approval by the University of Teesside and an NHS Research Ethic Committee. All participants provided informed consent. All names and other identifiable information have been changed or removed to ensure patient confidentiality.

Participants

Six married couples were recruited through mental health services for older people within a NHS Foundation Trust in England, using a purposive sampling method. Participant demographic information is presented in Table 1.

Table 1.

Demographic characteristics of study participants.

Couple	Gender	Age	Diagnosis	Memory problem duration	Time since diagnosis
P01 and P02^a	Female and Male^a	78 and 79^a	Alzheimer’s disease	2 Years	6 Months
P03 and P04^a	Female and Male^a	75 and 80^a	Mixed dementia	1 Year	6 Months
P05 and P06^a	Female and Male^a	73 and 78^a	Alzheimer’s disease	8 Years	4 Years
P07 and P08^a	Female and Male^a	72 and 78^a	Mixed dementia	3 Years	2 Years
P09 and P10^a	Female and Male^a	74 and 78^a	Alzheimer’s disease	1.5 Years	8 Months
P11 and P12^a	Female and Male^a	69 and 74^a	Alzheimer’s disease	7 Years	5.5 Years

Person with dementia.

Design

The sample comprised six men with a diagnosis of dementia and their six wives. All participants with dementia were male and between the ages of 74 and 80. The wives were all younger. Four people were diagnosed with Alzheimer’s disease, and two with mixed dementia. The length of time since diagnosis ranged from six months to five and a half years. Although there are many types of couples, e.g. married, cohabiting, civil partnerships, the participants in this study were all married.

Participants were interviewed at their local memory clinic service in a private room on a one-to-one basis. As recommended during client feedback regarding the design of the study, the two members of each couple were interviewed separately, so that each member of the couple was able to speak freely without fear of upsetting their partner. A semi-structured interview schedule was used to structure the interview and guide the researcher. It was developed on the basis of existing literature about couple relationships and dementia. The questions focused on the history of the couple’s relationship; the experience of memory difficulties, and the impact this has had on their lived experiences and relationship with one other. The length of interviews ranged from 28 minutes to 70 minutes (average length 53 minutes), representing a total of 10 hours and 48 minutes of data. All interviews were audio recorded and transcribed with the permission of interviewees.

Transcripts were analysed using interpretative phenomenological analysis (IPA) (Smith, Flowers & Larkin, 2009). Several measures were taken to ensure the trustworthiness of the analysis, as recommended by Yardley (2000). For example, all themes which were developed were rooted in the participant transcripts using verbatim quotes. Also, member checking of themes was carried out with a subsample of participants to ensure that their view had not been misinterpreted. Triangulation through respondent validation was used to increase the credibility and validity of the results.

Results

Three superordinate themes emerged from the analysis: Maintaining a bond, Change and adjustment and The challenge of coping. The superordinate and subordinate themes describing the lived experiences of dementia in a couple relationship are represented in Table 2.

Table 2.

Superordinate and subordinate themes.

Superordinate theme	Subordinate theme
Maintaining a bond	CommitmentKeeping connectedTogetherness
Change and adjustment	A re-adjusted life/heavy burdenA change in identityThe prospect of future separation
The challenge of coping	The emotional impact (difficult to cope with)DenialSense making and stoicism (coping strategies)

Theme 1: Maintaining a bond

Commitment

Many couples spoke about their commitment to one another which is based on the shared history of the relationship. This commitment seems to provide the couples with the value of sticking by one another in times of hardship. They seemed to be committed to the wedding vows that they had made to one another, and to the institution of marriage.

P06, PWD: .. relationship wise we just kept going because the commitment kept us going. I’m aware of that.

P09: .. I mean years ago I was brought up when you were married, you were married for life, unless, you know. Unless, just never got into the equation.

The shared history of commitment contributed to a sense of a duty, but there was a strong suggestion that you simply cannot abandon your partner.

P01: It will just carry on as we are, we will always be a couple and that's it.

P08, PWD: Keep together and stay together, you know. I mean one day one of us will go when we. You can’t get out of it can you. Nobody can.

Keeping connected

Their ability to reminisce on the good times also seemed to be important for them in order to maintain the sense of the person with dementia.

P11: I mean we have had a happy marriage which we’ve had no problems along the way, when I listen to some people I think how lucky I have been.

The premorbid relationship was regarded very highly by all couples, and it was viewed as an extremely important foundation for their current relationship with one another, and how they would negotiate the dementia diagnosis. To help them manage the experience of living with dementia, many of the couples were able to reminisce about the positive aspects of a life shared and having been there for one another. This history of the relationship appears to influence the discourse between couples, allowing those who have successfully faced adversity in the past to remain emotionally connected in spite of the dementia. Coming through previous difficulties appeared to strengthen the connection between these couples in comparison with those who have never been confronted with challenges in the past.

P04, PWD: Oh well this is something you either put up with it or you sink. The problems we’ve had and shared we sorted out. They haven’t always been successful, things you have no control over shall we say. Things you don’t create yourself, but just pops up you know.

P06, PWD: We feel like we have engaged with life, met with life, we’ve coped with life and we can cope with life, and we do cope with life and so the future.

Togetherness

Couples spoke of sorrow at their loss of closeness and togetherness, and felt they were no longer equal partners in a sense. Some couples expressed grief at this loss. For one couple in particular, the husband expressed a desire to recapture the closeness that was lost, whereas his wife spoke of missing the closeness of their relationship, but had no interest in rekindling it.

P01: I think the fact that you are the sole carer and you lose that not togetherness, you lose that coupleness.

P04, PWD: .. I felt that I was in need of it really, well just closeness you know… she didn’t seem to be very interested at all.

P11: About how I miss him, how I miss that closeness of the relationship that you had for all that time. Forty years, over 40 years at the time, you know.

It seemed that many of the couples were going through a living bereavement for a life lost. They found themselves confronted with lots of changes, and in a sense, they seemed to be grieving for a former relationship. For some, the love they still felt for each other was very much evident and remained unchanged by the diagnosis, but others appeared to stay together out of a combination of duty and their shared history.

P08, PWD: I don’t think I’m going to change, well not yet. When you love somebody you are just in love, that’s the end of it. If you do fall out of love, you are mad.

P09: We are just plodding along, I mean by the time you have been together this long you carry on and do your own thing more or less really.

Theme 2: Change and adjustment

A re-adjusted life/heavy burden

Couples spoke about the impact of dementia as a life-changing experience. All of the couples were faced with the tasks of integrating dementia into their lives and readjusting particular roles within the relationship, but there was also a heavy burden for carers.

P01: I'm not getting any younger myself you know, at 79 I'm suddenly 24 hours on the job, a carer and not being looked after myself, apart from my family who do. But it's almost, just as if the roles have completely switched.

P07: Well I just cook, clean, wash and look after him. That’s all.

All of the couples had neither choice nor control of unwanted changes in their roles. However, it was not just the wives of the person with dementia who were affected by these changed roles.

P02, PWD: I don’t like charity, and I don’t like it, and I think at times I don’t like her to feel like she’s got to stick by me because I’m ill. I don’t want that, I hate that.

A change in identity

Couples spoke about struggles with adjusting to their identities; as new caring roles were defined for wives of people with dementia. The wives of people with dementia felt that they were losing an adult to adult connection with their partners, as they spoke of the loss of their sexual relationship specifically.

P03: I think it’s like we have become more like Darby and Joan instead of a loving couple, for instance we kiss and cuddle, we hold hands but I mean it’s just become more that we are just closer in that sense rather than sexually.

(Note: Darby and Joan is used to describe an elderly devoted married couple. It is not an expression commonly used outside of the UK.)

P08, PWD: Well I couldn’t take my wife to bed anymore and I think that’s where the make-believe comes in, you know.

P11. Yes, the relationship, sex is just a thing of the past.

Couples also discussed their experiences of accepting and dealing with the diagnosis and what this meant for their relationship. In particular, wives spoke of the change of identity from wife to carer and that of husband to invalid or child. In contrast, the husbands did not express a perceived change in roles, but acknowledged a widening distance in the relationship.

P01: Well our time together and his role as my husband, it’s more now looking after an invalid, like a child, if you like.

P04, PWD: .. We have matured in a way because we are having to deal with it, accepting that thinking it’s myself, and blaming, that doesn’t do me any good, I know that. So had a lot to try and differentiate between what happened, why, and that it’s my fault and whatever. We are not as close in some ways really, more distant. I sometimes think that we let it affect us more than we should.

The prospect of future separation

Many of the couples expressed difficulty in tolerating the uncertainty of the future knowing that dementia is both progressive and unpredictable. People with dementia would often consider their own mortality and the fear surrounding it. The possibility of needing residential care was also a concern for some couples, but for both partners trying to talk about the future was equally emotionally distressing.

P02, PWD: I’ll be frightened. I suppose when I’m waiting for it and the day comes I’ll be sitting in tears… I’m not brave you know, I’m not stupid. Being put in a box and screwing the lid down. I mean what if I wake up and I can’t get out. It’s a long way to dig out isn’t it, if you’re down there (laughs). It’s something that you push to the back of your mind and that’s it, you accept you know.

P07: I can’t remember what he did, but he said, “well if I carry on like this much longer you won’t be able to look after us, will you”. I said, no I won’t.

It was not just the prospect of being separated in a physical sense that participants described, but also the loss of the recognition of a long-lasting and loving relationship.

P11: Hurt, devastated. He doesn’t remember our son. (Tearful). I mean, he’s not going to remember me eventually.

Theme 3: The challenge of coping

The emotional impact (difficult to cope with)

All of the couples reflected on the rollercoaster of emotions (frustrated, worried, upset, fearful, etc.) which preceded a dementia diagnosis. Many spoke of the stress caused from this life-changing event. There was a strong sense that life had somehow been prematurely cut short as a result of the dementia, and many were grieving the loss of a partner who was still alive. When the couples talk about the dementia, they expressed feeling sorrow, worry, frustration and being trapped; however, when they refer to dementia directly, it’s in angry terms, as if they are talking about a distinct malevolent entity.

P01: Well I would say it has changed my life completely and maybe stressed. I often feel stressed, tired. Because it's tiring and we don't go anywhere now whereas we had a full life.

P02: Scared. Obviously I know I am not a brave man, but how do you think it makes you feel when you know you’ve got… if you’ve had it a year and you know that thing is there.

P03: He dots his I’s and crosses his T’s, and I thought you know that will be taken away from him. And it’s just that you think is, that person has been sucked out of that body.

People with dementia spoke of their anxiety because of what was happening to them:

P02, PWD: I worry about (wife’s name). I hope she forgives me, she would be better off without me at times, I think. You know the worrying, I know I’m worrying about, what can I do about that? Can’t change the worry. If I could, I would.

P12, PWD: Well it is a nuisance. It is, if you don’t know it. If you don’t know what you’re doing.

Denial

Many couples spoke about denial in relation to not wanting to accept or acknowledge the presence of symptoms and/or the dementia diagnosis which subsequently followed. This involved some couples observing denial in their partners first hand. It seemed that some participants did not believe it or they simply did not want to believe it.

P04, PWD: I was in denial in a way, but it was quite obvious because he gave me the information and made us realise.

P06, PWD: In fact, that was part of the denial and the anger that, this arbitrary loss of control.

In an attempt to cope with the diagnosis, some participants would use denial as a way of coping; however, a lack insight due to their cognitive issues must also be considered as a potential reason for this.

P10, PWD: I don’t forget to do things I just have to think, slowdown, think about it and then do it, you know. I can’t pass comment on something that I haven’t got put it that way.

P12, PWD: Alzheimer’s? What’s that? Now I have never really noticed it.

Some couples seemed more comfortable than others at accepting the diagnosis.

P07: Well I don’t like it, he is never going to accept that he needs help, and he won’t have it.

P09: As long as he can keep going on like he is, he will be fine. He is just as determined to fight it as I am I think.

Sense making and stoicism (coping strategies)

Throughout all of the interviews, couples displayed a strong sense of stoicism and the need to make sense of their experience as ways of coping. All of the participants seemed to want to keep calm and carry on. Traditional British stoicism was particularly evident, and this notion of sticking together seemed to be preserved as they joined forces in their fight against dementia. For example,

P08, PWD: Get on with it. Don’t let the bastards drag you down. You have to put up with it haven’t you and you have got to fight it. That’s a good one. How to fight it? How do you fight anything? I don’t know.

P01: Well when you've been together all those years and throughout all his failings, and I'm sure I've got failings as well, you know you are a couple, you just can't give up.

One of the ways some couples seemed to cope was through searching for answers and explanations to make sense of what was happening to them. Many talked about the need to obtain information, together with the notion that being forewarned is forearmed. Some of the participants would try to attribute a possible cause for the dementia in light of the lack of a definitive answer. For some, a reason or cause, no matter how implausible, was preferable to not having something to blame. In some cases, this could lead to the potential for finger pointing and misplaced anger, and potentially resulting in underlying tensions within the relationship.

P01: .. his character has always been a Jekyll & Hyde, irrational in a lot of ways, and you could almost guarantee that he would end up having Alzheimer's because of his personality I think.

P07: So I don’t know if it has gone through the family, I don’t know. It will be related because I don’t know, is it hereditary?

Discussion

This study aimed to explore how couples experience the impact of dementia within their relationship. The themes from the analysis capture the complex and interdependent features of the lived experiences of dementia: Maintaining a bond, Change and adjustment, and The challenge of coping.

The first theme, Maintaining a bond, describes the couples’ shared sense of commitment, and a mutual determination to stick by one another in the face of adversity. The ability for them to remain connected was extremely important to them. However, they also spoke about threats to their sense of togetherness and having to work hard to maintain their sense of a mutual bond. The history of the shared relationship appeared to be fundamental to the level of commitment couples had for one another, resonating with previous research findings (Baikie, 2002; Davies & Gregory, 2007; Menne et al., 2008; Whitlatch, 2001). Many of the couples would reminisce about the positive aspects of a life shared and having been there for one another in order to help manage the experience of living with dementia. They would achieve this by reminiscing with their partners on positive aspects of their lives together, and particularly memories of the premorbid relationship (Daniels et al., 2007). A commitment to the wedding vows that they had made to one another and to the institution of marriage was evident. However, this sense of commitment seemed to also conflict with a sense of duty. Davies (2011) suggests that couples have a sense of obligation to honour their wedding vows.

The second theme, Change and adjustment, identifies dementia as a life-changing experience. Knowing that dementia is both progressive and unpredictable in nature left many couples frightened about what the future may hold. Almberg et al. (1997) observed anticipatory grief in couples as they explored the prospect of future separation, and the loss of a long-lasting, loving relationship. The same finding emerged in the current study. The couples discussed significant changes and adjustments they had to make in order to accommodate dementia into their relationship. For instance, relationships had taken on a parent–child quality as opposed to husband and wife. It was clear that many of the couples struggled with how to adjust their identities; as new caring roles were defined for partners of people with dementia, but there was also an unwanted emotional cost. This supports the notion of love labour being at times both a pleasure and a burden (Lynch, 2007). The wives spoke of the dementia at times in negative and derogatory terms, on occasions showing resentment and animosity towards their husbands. The negative discourse invoked by the wives about dementia carries the potential to adversely impact on the care relationship. As dementia progresses and their burden of care increases, their resentment may also increase. It is possible that they may even come to view their partner negatively and develop a case of carer burnout and fatigue.

The third theme, The challenge of coping, articulates the rollercoaster of difficult emotions experienced by the couples after the diagnosis of dementia was given including; sadness, disbelief, fear, and uncertainty at the prospect of future life changes. This is consistent with previous research (Baikie, 2002; Robinson et al., 2005). The couples would adopt different coping styles and strategies, and there seemed to be two main methods of coping, the first being the use of stoicism and the determination to fight dementia head on. Traditional British Stoicism was particularly evident and the notion of sticking together seemed to be preserved as they joined forces in their fight against dementia. The second involved an increasing need to make sense of their lived experiences. The couples in the present study appeared to be extremely resilient, and they would accentuate the positives wherever they could. The stoicism displayed by the couples was an unexpected finding and not one previously considered, although this stoicism was an external presentation which masked their underlying emotional distress. However, the potential implication is that these individuals are more likely to keep their wishful thinking and their feelings to themselves, and are perhaps therefore, more reluctant to seek support. Given the heavy emotional burden reported, the findings of this study suggest that, when appropriate, interventions for couples together, e.g. couples counselling for couples where one person has a dementia, may help with the ongoing process of adjustment.

The present study represents an understanding of the lived experiences for couples. In the current research, people with dementia were provided with a voice and they were empowered to share their insights. However, there are limitations which need to be considered. For instance, all of the participants who volunteered for the study had been intentionally selected from memory clinics. Thus, they were all in receipt of support from staff specially trained in dementia care. In addition, the sample comprised a small number of white British couples who were all married. It is unclear whether same sex and unmarried couples will go through the same process of adjustment to a dementia diagnosis. It would have been useful to consider the perspective of couples who entered into a relationship later in life. Furthermore, the study only focused on female caregivers of people with dementia. Therefore, the experience for male partners providing care for their female counterparts with dementia remains unclear. A further limitation is that only two out of the six people with dementia had more moderate stages of the disease, the remaining had mild dementia. All participants were between the ages of 69 and 80, so older adults outside of this age range were not considered. It would also be interesting to look specifically at how young onset dementia patients and carers adjust and incorporate dementia into their relationship, and whether we can see any cohort effects that distinguish the two groups. The idiographic nature of phenomenological research also means that the interpretation of the data cannot be generalised.

It is clear that many of the couples struggled to integrate dementia into their life. This was clearly influenced by the emotional burden of caregiving and the need to readjust to particular roles. Couples also seem to adopt different coping styles and strategies for dealing with dementia in their relationship on a day-to-day basis. A recommendation is therefore to ensure that at the point of clinical assessment it examines some of the areas which are connected with the findings of the study. Furthermore, additional psychological support could be offered to couples to help them process the anticipatory grief, to recognise the feelings of emotional burden, and the guilt of caregiving and/or care receiving. It may also be beneficial to offer dyadic interventions immediately post diagnosis, once medical treatments have been provided. This would facilitate access to timely support and help couples to adjust and adapt to the dementia (DoH, 2009, 2012, 2015).

Conclusion

This study has provided a detailed understanding of the lived experiences of dementia for six couples, where one partner has a diagnosis of dementia. Overall, the findings highlight the importance of studying the dyadic perspective, and including people within dementia research. The couples experience an enduring commitment to one another as they adjust to life with dementia, and will use various coping strategies to help them overcome any difficulties. The findings provide support for comprehensive clinical assessment and psychological support for couples, where one partner has a diagnosis of dementia.

Footnotes

Declaration of Conflicting Interests

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

Funding

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

Suzannah Clark conducted this work in part fulfilment of her Doctorate in Clinical Psychology, University of Teesside. She has subsequently qualified and is working as a clinical psychologist in the North East of England.

Tim Prescott is the former programme director of the Clinical Psychology Doctorate, Teesside University, Middlesbrough, UK.

Gemma Murphy is a highly specialist clinical psychologist working in the North East of England. Her special interests focus on the impact of living with a diagnosis of memory impairment with the aim of improving local dementia trust-wide pathways and national awareness of the process of giving a diagnosis.

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