Article

Impact of dementia on marriage: A qualitative systematic review

Dementia 2014, Vol. 13(3) 330–349 ! The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301212473882 dem.sagepub.com

David Evans and Emmanuel Lee University of South Australia, Australia

Abstract This qualitative review explored the impact of dementia on marriage. The method was informed by systematic review and qualitative research methodologies. A comprehensive search of major databases was undertaken. The search identified 115 studies on the topic; 23 met the inclusion criteria and 19 were appraised as being of good methodological quality. Two major themes and five sub-themes emerged from the analysis of included studies, transition and loss. The theme of transition encompassed the three sub-themes of relationship, roles and intimacy and reflected the changes in the marriage and marital relationship that accompanied dementia. The theme of loss encompassed the two sub-themes of loss of a partner and loss of a marriage, which reflected the many losses that accompanied dementia. However, transition and loss were inter-related, because each change was accompanied by loss and each loss produced another change in the marriage. Keywords dementia, marriage, qualitative, review

Impact of dementia on the marriage Dementia is a chronic and progressive disease of the brain that is characterised by impairment of language, memory, perception, cognitive skills and personality. Impairment of these functions will have an impact on all aspects of the person’s life and close relationships. For married couples, dementia has a profound impact on their marriage. While all types of illness place strain on a marriage, dementia brings special stresses for married couples because of the many losses that accompany the condition. Older married people become engaged in a dynamic relationship with a partner, negotiating the final stage of their marriage in light of a lifetime of experiences and expectations for the future (Lewis, 1998).

Corresponding author: David Evans, School of Nursing and Midwifery, University of South Australia, GPO Box 2471, Adelaide, 5001, South Australia. Email: [email protected]

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The progressive and uncertain nature of the cognitive decline means that the change to the marital relationship is not always a linear process. As the dementia progresses and communication skills decline, the resulting change to the quality of marital communication can have a significant impact on the caregiving spouse (Braun, Mura, Peter-Wight, Hornung, & Scholz, 2010). Intimacy within the marital relationship also changes and couples report a reduction in physical intimacy (Harris, 2009). Caregiving spouses often support their partner to continue their traditional functions within the marriage (Fjellstro¨m et al., 2010) and participate in important activities (Hellstrom, Nolan, & Lundh, 2005). However, roles and responsibilities within the marriage are more fluid and reflect the cognitive function of the partner with dementia. The role of one spouse gradually expands as they accept greater responsibility for decision making and increasingly assume a caregiving role. As a result of these many challenges, caregiving spouses report greater degrees of sadness and loneliness and have more depressive symptoms and less hope for the future than other non-caregiving spouses (Adams, 2008; Beeson, 2003). However, the experience of caring for a partner with dementia encompasses a broad range of emotions. Some spouses describe caring for their partner as a satisfying experience, an opportunity to give back the love that they had received during their marriage (Shim, Barroso, & Davis, 2012). This highlights the dynamic and complex nature of the marital relationship when one partner has dementia. More recently there has been a shift away from a biomedical view and personhood has emerged as a new perspective for research focusing on the dementia experience (Woods, 2001). Personhood concerns the standing or status bestowed on a human by others (Kitwood, 1997). Personhood is important because it challenges the dominant ways of understanding and constructing the dementia experience (O’Connor et al., 2007). As part of this discussion, couplehood has also emerged as an important concept in our understanding of the experience of dementia in marriage (Hellstrom et al., 2005; Hellstrom, Nolan, & Lundh, 2007; Kaplan, 2001). The concept of couplehood acknowledges the impact that dementia has on both marital partners, and on the marital relationship. The impact of dementia on a marriage has been investigated by a number of different qualitative studies. Each study offers a unique view of the husband, wife or couple. This qualitative systematic review was initiated to pool the findings of this body of research to uncover the hidden world of the husband and wife living with dementia.

Method This review sought to generate an understanding of the impact of dementia on marriage by collecting qualitative descriptions of the phenomena that have been reported in the literature. A qualitative interpretive approach that was informed by systematic review and qualitative research methodologies was used for the review.

Inclusion criteria To ensure a homogenous sample of studies focusing on the impact of dementia on marriage, criteria were used to select studies for inclusion in the review. These criteria were: (1) participants were married couples, husbands or wives;

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(2) the condition of interest was dementia or Alzheimer’s disease; (3) the focus was on some aspect of the experience of having a partner with dementia or the impact of dementia on the marital relationship; (4) the study utilised a qualitative research methodology; (5) the study was published in English language. These inclusion criteria were used initially during the search to assess the titles and abstracts of identified studies to determine whether to retrieve the full article. When the full article had been retrieved, the criteria were used again to determine whether the article could be included in the review. These criteria were strictly applied, so studies that involved married couples but focused on caregiving, or specifically explored concepts such as burden or couplehood, were excluded from the review. The aim of this process was to distil a collection of homogenous studies from the literature that exclusively explored the impact that dementia has on a marriage.

Search Identifying qualitative research in electronic databases can be quite challenging (Evans, 2002a). To increase the likelihood of identifying all relevant studies, a comprehensive three-step search strategy was utilised. The intention of this search strategy was not necessarily to find every study on the topic, but rather to gather a broad sample of studies that explored the phenomenon from multiple different perspectives. It was the breadth of studies rather than the number that was considered most important for generating a rich description of the phenomenon. The first step in the strategy entailed a limited search of publications in Google Scholar, MEDLINE and CINAHL to identify key search terms. The key search terms that were identified focused on the condition (Alzheimer’s or dementia) and the participants (wife, wives, husband*, marital, marriage, married, couple*, spouse*). The second step of the search entailed the use of these key search terms during a comprehensive database search. Databases were searched independently by the two reviewers and included CINAHL, EMBASE, MEDLINE, PsycINFO, AgeLine, Ovid Nursing Database, Family & Society Plus, Health & Society Database, Humanities and Social Sciences Collection, Rural & Remote Database, Australian Medical Index, Cochrane Library, Sociological Abstracts, Google Scholar and Current Content. The indexes of some key journals were also searched to identify studies missed during the database search. These journals included Australasian Journal on Ageing, Alzheimer’s and Dementia, American Journal of Alzheimer‘s Disease, and Dementia. The third step of the search involved checking the reference lists of relevant articles for additional studies.

Critical appraisal Studies that met the inclusion criteria were appraised for methodological quality. There is still considerable controversy surrounding the appraisal of qualitative research and no single standard has been identified. For this review, the Critical Assessment Skills Program (CASP) tool for qualitative research was used (Milton Keynes Primary Care Trust, 2002). This tool

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was used to inform discussion about the methodological quality of each study. Studies were excluded from the review if methodological limitations were identified. This critical appraisal process resulted in four studies being excluded from the review: two studies because of limited reporting of findings, one because qualitative data appeared to be more of a supplement to the quantitative data and one because of limited reporting of analysis.

Data synthesis The aim of the synthesis was to identify the themes emerging from the text of included studies in order to uncover the hidden world of dementia in marriage. A qualitative interpretive approach to the data synthesis was used because the review sought to do more than just identify common themes; additionally, it sought to investigate and interpret the meaning of the data. Studies using different qualitative methods were included in the synthesis because each was seen to provide a unique perspective. Each study was considered to be a single case, providing a different view of the impact of dementia on marriage. Data synthesis was achieved using a thematic analysis. This analysis was undertaken independently by two reviewers. Impressions and reflections were recorded in a journal during this process to help ensure that important observations about studies were not lost as the synthesis proceeded. Once the sample of studies had been gathered, the synthesis process consisted of three phases: identifying the meaning in studies, comparing themes across studies and describing the phenomenon (Evans, 2002b). Identifying the meaning in studies (1) Each study was read to gain an understanding of the findings as a whole. Studies were read a second time to identify and list significant statements, identifying both similar and different ideas emerging from the text. When listing the significant statements, the text surrounding the statement was also copied if required, to ensure that the context of the statement was preserved during the synthesis. (2) Each study was then read a third time and compared to the list of significant statements to identify a preliminary list of codes in the form of keywords that described the meaning of the text. (3) When all studies had been abstracted, the two researchers discussed and compared the list of significant statements and the preliminary codes for each study until a consensual list was developed.

Comparing themes across studies (1) Emerging themes were collated by grouping and categorising them into areas of similarity. Relationships in the themes from different studies were examined for key phrases and explanatory themes. (2) Sub-themes in the collated themes were identified through a process of progressive refinement of the understanding of the phenomenon. (3) Themes and sub-themes were re-examined to interpret the content of each theme and to identify consistencies.

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Describing the phenomenon (1) The list of significant statements was searched to identify excerpts from the studies that could be used to illustrate the meaning and context of the themes and sub-themes. (2) The themes and sub-themes were compared and contrasted to the primary studies to identify any inconsistencies and inaccuracies, and to ensure that they represented the findings reported by individual studies. This constant reference back to the original studies served as a form of member checking to validate findings and also ensure that the original context was preserved. (3) The product of the synthesis was then written up describing all themes and sub-themes, supporting each with exemplars from the original studies. When the product of the synthesis had been completed, all quotes were checked against the original studies to ensure their accuracy and that they had not been used out of context.

Sample of studies The search, selection and appraisal process resulted in 19 studies being included in the review. See Table 1 for a summary of the outcome of each phase of the review process. The 19 studies included came from five different countries. See Table 2 for the characteristics of these studies.

Table 1. Summary of review process. Database search # 567 studies identified (Medline database) # Initial selection # 115 studies selected # Inclusion criteria # Included ! Excluded # # 23 studies 92 studies # Critical appraisal # Included ! Excluded # # 19 studies 4 studies

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UK

Canada

USA

USA

USA

Sweden

Siriopoulos et al., 1999

O’Donnell, 2000

Kaplan, 2001

Baxter et al., 2002

Svanstro¨m et al., 2004

Canada

Morgan et al., 1991

Lewis, 1998

Country

Author

Table 2. Characteristics of included studies.

Explored the impact of the diagnosis of Alzheimer’s disease from the perspective of the caregiving spouse Explored the ways in which couples’ marital experience impacted on the challenges faced when one spouse develops dementia late in life and is cared for by their partner Explored the experiences and needs of husbands caring for wives with Alzheimer’s disease Explored the experience of living with and caring for a spouse with Alzheimer’s disease Investigated the degree to which spouses of people with Alzheimer’s disease perceived themselves as married Explored how wives coped communicatively with their husbands’ dementia Investigated the lived experience of dementia for spouses where one of them is diagnosed as having dementia

Focus

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Symbolic Interactionism

68 community-dwelling spouses of institutionalised people with Alzheimer’s disease (42 female and 26 males) 21 wives

Phenomenology

(continued)

Phenomenology

12 people (10 females and 2 males)

5 married couples

Phenomenology

8 husbands

Dialetical theory

Life course Theory

Grounded Theory

9 spouses of people newly diagnosed with Alzheimer’s disease (3 men & 6 female) 9 elderly spouse carers (3 men & 6 females)

Method

Participants

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USA

Canada

USA

USA

Daniels et al., 2007

Furlong et al., 2008

Harris, 2009

Hayes et al., 2009

USA

Calasanti et al., 2006

South Africa

UK

Galvin et al., 2005

Potgieter et al., 2006

Country

Author

Table 2. Continued

Explored issues surrounding one carer’s experience of Alzheimer’s disease Explored ways in which gender may influence how spouse caregivers experience care work Investigated the stressors and strengths reported by women caring for a spouse with dementia. Exploration of one couple’s marital relationship when one is diagnosed with Alzheimer’s disease Explored how individuals manage self-care while caring for a person with Alzheimer’s disease Investigated the intimate relationships of married caregivers and their spouses with dementia Explore how caregivers of spouses with dementia perceive identity changes in themselves and their spouse, and how this affects marital intimacy and reciprocity

Focus

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Case Study / Phenomenological approach to analysis Gender-sensitive, constructivist approach

Mixed method

Case Study

Grounded theory

Grounded theory

Social constructionist, symbolic interactionist approach

Single male carer

22 carers for noninstitutionalised spouse with Alzheimer’s disease (13 females and 9 males) 8 wives

Single married couple

9 spousal caregivers (6 female and 3 male)

16 married caregivers and 16 married people with earlystage dementia 28 spousal caregivers (15 female and 13 male) of people with Alzheimer’s Disease

(continued)

Method

Participants

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USA

Canada

Sweden

UK

UK

Atta-Konadu et al., 2011

Fjellstro¨m et al., 2010

O’Shaughnessy et al., 2010

Walters et al., 2010

Country

Sanders et al., 2009

Author

Table 2. Continued

Explored the changes in roles, responsibilities and relationships of men caring for spouses with Alzheimer’s disease Explored food-related role shift experiences of husbands and their wives with dementia. Examined how people living with persons with mild-tomoderate Alzheimer’s disease perceived everyday life aspects of food choices, cooking and food-related work Investigated spouse carers’ experiences of the impact of their partners’ cognitive decline on their relationship Explored spouse caregivers’ understandings of and responses to partners with dementia.

Focus

Grounded theory

9 couples where the husband acted as carer for a wife with dementia 3 focus groups that involved a total of 17 people (11 female and 6 male)

Phenomenology

Phenomenology

7 carers (5 female and 2 male) of a spouse with mid-stage dementia 6 women who had acted as carers for husband for at least 2 years

Focus Groups

Phenomenology

Method

17 husbands

Participants

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Findings Two major themes and five sub-themes emerged from the analysis of the included studies. The first major theme was transition, which reflected the gradual changes in the marriage and marital relationship that accompanied dementia. Transition involved three sub-themes: relationship, roles and intimacy. The second major theme was loss, which reflected the many losses that accompanied dementia. Loss involved two sub-themes: loss of a partner and loss of a marriage.

Transition The theme of transition concerned the many changes that dementia brought to the marriage. These changes were small at first, but increased over the years to impact on all aspects of the marriage and marital relationship. The slow, progressive nature of this transition was emphasised by participants in a number of studies. A husband said ‘it creeps in . . . ’ (Harris, 2009) and a wife noted that ‘[l]ittle by little you would notice the changes . . .’ (O’Donnell, 2000). One wife commented that ‘when he does little things that seem so deliberate . . . I got very mad at him’ (Potgieter & Heyns, 2006, p. 554). After the diagnosis of dementia had been made, one wife commented that ‘the whole situation improved for me’ and another said ‘I knew who my enemy was’ (Potgieter & Heyns, 2006, pp. 554–555). The transition occurred on a number of different levels. One level related to the changes that happened to the person with dementia. At the beginning, these changes were small and easy to miss. As the dementia advanced, so did the changes and, as the magnitude of the change increased, the person with dementia started to become a stranger to their partner. On another level, there was evidence of a transition from independence to dependence for one spouse, and from partner to carer for the other. There was also a transition in roles: one spouse gradually stepping back from their normal duties and responsibilities, the other stepping up to new ones. It was evident in the studies that this was not a smooth linear process but happened in jumps and starts, advancing and retreating. Husbands and wives supported each other during this change, with one spouse assisting their partner to take on new roles and the other helping their partner to maintain their old roles for as long as possible. There was also evidence of a broader transition as married couples travelled a difficult journey together. The starting point for most couples was the diagnosis of dementia. Mrs E said ‘ . . . after the diagnosis, I just bawled and bawled . . . ’ (Morgan & Laing, 1991, p. 379). Much later in the journey, there was concern about having to face a future alone. Clare said: ‘I fear that if I’m the one who is left behind . . . I just feel that it is going to be just a tremendous hit then’ (O’Shaughnessy, 2010, p. 247). While the transition encompassed all aspects of the marriage, three specific areas emerged from the studies. These three sub-themes were: the relationship, roles and intimacy. Relationship. The relationship of husband and wife changed as a result of the dementia. O’Donnell (2000) reported that the changes in the partner with dementia necessitated changes in the relationship. Kaplan (2001) developed a typology of couplehood, describing the different degrees of separation caused by the dementia as unmarriedmarrieds and husbandless-wives/wifeless-husbands. Baxter and colleagues described those dealing with the contradiction between a spouse’s physical presence and cognitive absence as

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‘married-widows’ (Baxter, Braithwaite, Golish, & Olson, 2002). These descriptions reflect the changes in the marriage, particularly in terms of the companionship that the couple shared, the reciprocity in the partnership and the nature of the relationship. Companionship in the marriage was lessened because dementia had an impact on everyday conversations between husband and wife, interests that they shared and mutual support. As a consequence, husbands and wives felt lonely in their marriage. For example, Mrs N said that she missed using her husband as a sounding board and missed ‘talking to him about things on the news, or in the paper’ (Walters, Oyebode, & Riley, 2010, p. 181). A husband commented that ‘[y]ou can’t have a discussion anymore, not a real discussion’ (Siriopoulos, Brown, & Wright, 1999, p. 81). Another husband made a similar comment: ‘I miss the conversations without her asking the same question over and over and over again and then moving on to another question 10 minutes later’ (Sanders & Power, 2009, p. 49). The loss of companionship extended outside the marital home because of the challenges of taking a partner with dementia to public places. Even shopping with the partner could be difficult. One husband noted that ‘[i]t takes so much time if we both go to the shop’ (Fjellstro¨m et al., 2010, p. 523). Another husband said that his wife ‘picks things up and puts them in other people’s baskets you know or trolleys. Some people get angry and others laugh . . . So I, I don’t want her to come with me, because there will just be trouble you know’ (Svanstro¨m & Dahlberg, 2004, p. 679). As a result of these difficulties, some caregiving spouses were reluctant to venture outside their home. This loss of companionship was exacerbated by a similar loss in social networks. One husband said that ‘ . . . your friends just kind of hold you at arm’s length’ (Hayes, Boylstein, & Zimmerman, 2009, p. 53), and a wife said she felt ‘like I’ve been left like a hot potato’ (Kaplan, 2001, p. 93). The reciprocity within the relationship gradually changed as the dementia advanced. The mutual contribution of each spouse was lost as one person assumed the responsibilities of both partners. Anne commented on this change: ‘I suppose I find myself a bit at sea because the way we did it was such a perfect balance’ (O’Shaughnessy, 2010, p. 242). Mrs A described a similar experience: ‘There’s not that oneness any more. I have to make all the decisions’ (Morgan & Laing, 1991, p. 380). One wife said her husband ‘really does not have an appreciation for how I am feeling’ (Furlong & Wuest, 2008, p. 1666), and for Mrs K the lack of reciprocity led her to feel a lack of attention and affection: ‘I don’t get a cuddle or anything because, you know, there shouldn’t be anything wrong with me, I’ve always been healthy old Jan, you know’ (Walters et al., 2010, p. 177). The very nature of the relationship also changed, as the husband and wife relationship become more like that of parent/child or carer/care recipient. One wife said she had become a mother and her husband the child: ‘Being a mother is not a husband-and-wife relationship’ (Kaplan, 2001, p. 94). Another wife said ‘it’s sort of like talking to a five year old’ (Baxter et al., 2002, p. 18), and a husband admitted that ‘[a]t my age, I don’t really want to take care of a child’ (Sanders & Power, 2009, p. 49). Another spouse likened the situation to a parent dropping off a child at day care: ‘They are crying when you go and you are not out the door 10 seconds and they are playing with something’ (Furlong & Wuest, 2008, p. 1669). The change in the relationship is perhaps best captured by a comment from Mrs E: We used to talk for hours. Now I have to be careful what I say – he turns everything around. Now I tell him to come and sit beside me on the couch and tell me what happened at the day centre (Morgan & Laing, 1991, p. 380).

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In summary, dementia caused a gradual transition in the relationship between husband and wife. As the dementia advanced, companionship and reciprocity diminished. Over time the nature of the relationship changed, becoming more like that of a parent and child than a husband and wife. The end point of the relationship transition is perhaps best summed up as ‘unmarried-marrieds’ (Kaplan, 2001) and ‘married-widows’ (Baxter et al., 2002) – still together, but no longer a married couple.

Role. As the dementia advanced there was a gradual change in the role of the husbands and wives. The person with dementia gradually became less able to perform their normal duties, while their spouse was required to take on an expanded role. Some studies described this as a role reversal, others as a role change. It involved slipping in and out of roles within the marriage. There was some evidence that people with dementia helped their partners adjust to their new roles, for example wives with dementia teaching husbands to cook. Similarly, spouses helped the partners with dementia to hold onto their role for as long as possible, for example husbands helping wives with dementia to continue their role in the kitchen. There was a period during this role transition when both husband and wife shared the marital roles, with each partner contributing as they were able. The nature of the change depended on the role that each partner had within the marriage; however, many husbands found themselves doing what they considered to be ‘women’s work’ and wives found themselves doing ‘men’s work’. One study identified a gradual transition in food-related roles, described as ‘sliding into’ food roles (Atta-Konadu, Keller, & Daly, 2011, p. 4). This ‘sliding’ involved sharing roles, relinquishing them and taking on new roles. It involved the reluctance of one spouse to surrender their life-long food preparation role and the reluctance of the other spouse to take on a new and unfamiliar role. A study by Fjellstom et al. (2010, p. 523) reported that while experienced food providers struggled to please their partners, inexperienced food providers seemed to struggle to feed them. This struggle is best captured by the comments of one husband: ‘For me it’s been revolutionary. I’ve had to do it all. Before, I was the one peeling the potatoes. Now I have to teach myself. Sauces, how do you make sauces? I don’t know’ (Fjellstro¨m et al., 2010, p. 523). The role change was a challenge for many husbands because it involved taking on responsibility for household chores, cooking and intimate care. Husband Tom summarised this by saying ‘I’ve got to be the cook, the wash lady. I do it all’ (Daniels, Lamson, & Hodgson, 2007, p. 171). Another husband offered a similar comment: ‘The worst thing was getting used to doing the housework. Doing the laundry, sweeping up, doing dishes, cooking, trying to keep her happy . . . ’ (Siriopoulos et al., 1999, pp. 82–83). The role change for wives was equally challenging. Clare found maintenance of the house difficult: ‘I am not used to doing um a million things with drills and hammers and things . . . ’ (O’Shaughnessy, 2010, p. 244). Rosemary would stay up late each night because ‘there are things I can’t do during the day . . . so at night I pay bills . . . ’ (Calasanti & Bowen, 2006, p. 257). Wilma described her difficulty with the role change: ‘Of course I never had to put gas in a car, I never had to check the tires, I never had to do anything about an automobile because he did everything . . . ’ (Calasanti & Bowen, 2006, p. 257).

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However, some found the role change a positive challenge. One spouse who admitted to having always been reluctant to take a leading role said: I have developed a sort of independence that I have come to enjoy tremendously. I sometimes even find it a little comical . . . I often stop and think to myself, ‘I cannot believe it, just look at what I am capable of!’ (Potgieter & Heyns, 2006, p. 557).

Intimate care was identified as a particularly challenging part of the role change. For some husbands, the intimate care role was very challenging. One husband found himself having to learn how to do things such as makeup and bathing, and asked: ‘How do you get your wife to take a shower?’ (Harris, 2009, p. 257). Another noted that ‘incontinence is quite devastating . . . ’ (Galvin, Todres, & Richardson, 2005, p. 7). A husband confessed that he ‘had never dressed a woman before . . . ’, nor had he ever had to put a woman on the toilet (Sanders & Power, 2009, p. 46). Mr B unsuccessfully tried to coax his wife to bathe while he stood outside the shower-room door because ‘she’s always been a very shy person’ (Lewis, 1998, p. 220). However, some wives were also challenged by having to provide intimate care for their husband. Mrs C described her concerns about bathing her husband, which ‘just doesn’t seem right to me. You see I’ve got Victorian values’ (Lewis, 1998, p. 220). In summary, the transition in roles within the marriage as a result of the dementia required husbands and wives to learn new skills. The change was difficult for both partners, because one spouse was surrendering roles that defined their place within the marriage and the other accepting unfamiliar roles that expanded their responsibilities. Husbands and wives were supportive during this role transition, assisting each other to slip out of familiar roles and slip in to new ones. Intimacy. Dementia had a major impact on the intimacy shared by husband and wife. As the severity of the dementia increased, so did its impact on intimacy. For some couples the change in intimacy was linked to their changing roles within the marriage, when one person became more of a carer than a spouse. For others it was linked to changes in behaviour, such as their partner becoming difficult to manage or behaving like a child. Some spouses were concerned about the challenge of knowing whether their partner wanted and consented to physical intimacy. Others were confused about whether the person they had married was still present. However, as physical intimacy decreased, husbands and wives reported an increase in emotional intimacy, as partners found other ways to show their affection. The marital role changes that accompanied dementia reduced the intimacy between couples. One husband said: ‘When you’re a caretaker, the sexual intimacy that we had as husbands just isn’t there any more’ (Harris, 2009, p. 69). Another husband admitted he was so busy taking care of his new responsibilities that ‘ . . . sex is the last thing I am thinking about’ (Harris, 2009, p. 70). A wife reported similar conflicts between her roles as wife and caregiver: . . . when I have to beg him to come and just eat dinner or just to do those things that I’m trying to do for his sake, and when I have to spend so much energy to get him to do those things, I don’t feel very intimate . . . (Hayes et al., 2009, p. 56).

Some spouses were troubled by the changes caused by dementia, feeling that their partner was becoming a stranger to them. Wives were particularly concerned by what they saw as the loss of the person that they had married. One wife explained what she wanted to say to her

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partner: ‘I don’t want sex. ‘‘I don’t want sex with you because you’re not who you were before . . . ’’’ (Hayes et al., 2009, p. 55). Another wife described similar feelings about her husband: ‘ . . . he’s just not the same person . . . obviously I love him. But there’s no closeness, no intimacy’ (Baxter et al., 2002, p. 10). One wife said ‘Here he is, child-like in a sense, and he is sometimes, and this child then wants to have sex with me . . . that person that I knew is not really there anymore’ (Hayes et al., 2009, p. 55). Another commented: He’s just not the same person that he was. There’s a body there that’s capable to speak and move and do things but there’s nothing in there. There’s nobody in there literally. And the person he became I don’t particularly care for . . . (Hayes et al., 2009, p. 56).

Husbands appeared more troubled by the difficulty of knowing whether physical intimacy was still appropriate and whether their partner consented to it. One husband said: ‘I didn’t want something that wasn’t given with feeling. I didn’t want just sex’ (Hayes et al., 2009, p. 56). Husbands’ concerns regarding the appropriateness of physical intimacy related to their new role of guardian, carer or parent. However, husbands reported the development of greater emotional intimacy, highlighting the changing nature of the marital relationship. One husband said that ‘[o]ur relationship is now maintained through respect and thoughtfulness . . . things like that’ (Sanders & Power, 2009, p. 47); another said ‘I try to show affection in some [other] ways more often’ (Sanders & Power, 2009, p. 47). The shift from physical to emotional intimacy is best captured in this quote from a husband: ‘Our relationship has been, oddly, more platonic but at a deeper level, too. I feel things about our relationship that have drawn me even closer to her, even though the physical has been decreasing a bit’ (Harris, 2009, p. 69). Wives also reported a similar growth in emotional intimacy. One wife said: ‘Sometimes we just sit silent, we just sit there and hold hands’ (Baxter et al., 2002, p. 11). Another wife described the intimacy that she shared with her partner: ‘I would take him outside and walk . . . There was never really any conversation. I would walk with him. Just be with him, you know’ (Baxter et al., 2002, p. 11). A wife with dementia had similar feelings about the importance of this emotional intimacy: ‘I guess after everything’s done and the dishes are put away and we sit together on the couch. And he will have his arm around me and we still talk. That is the very best, the most intimate time’ (Harris, 2009, p. 69). In summary, dementia impacts on the intimacy that husbands and wives share. A reduction in physical intimacy was commonly reported by married couples. Wives sometimes stepped back from physical intimacy because of concerns about whether their partner was still the same person that they had married. Husbands were troubled by their role as caregiver and the appropriateness of having sex when consent was more difficult to obtain. However, both husbands and wives described greater affection and respect for their partner, and growth in the emotional intimacy that they shared.

Loss The second major theme to emerge from the studies was loss, reflecting the many losses that accompany dementia. While loss happened on many different levels and affected all aspects of the life of husband and wife, two sub-themes emerged from the data: loss of a partner and loss of a marriage.

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Loss of a partner. Dementia had a major impact on the person with the condition, and this in turn impacted on their ability to maintain their marital relationship. As the dementia increased, some partners started to have doubts about whether the person they married was still present. As cognitive function declined, there were changes in the person’s personality, communication skills and role function. Some husbands and wives viewed this cognitive decline as a loss of the person that they had married. One wife described this loss as ‘more like losing a husband, more like death, the only thing, you have him alive, see?’ (Kaplan, 2001, p. 93). Mrs P said of her husband: ‘He is just like a shell of his former self like you know, and they switched someone’s, someone else’s mind . . . ’ (Walters et al., 2010, p. 174). One husband said: ‘My wife is a totally different person than she was 10 years ago . . . ’ (Sanders & Power, 2009, p. 47). Mrs N said of her husband that she had ‘lost the person he was’, but did acknowledge that ‘he’s there if I look for him, you know, he’s there’ (Walters et al., 2010, p. 175). One wife was more blunt and described the loss as ‘from being this fabulous man to this whimpering man’ (Walters et al., 2010, p. 175). Another wife described the gradual loss of her husband: Little by little by little. That ability. I used to be able to go in and stand him up and put his arm around me and then hug him real tight . . . for a while he was capable of doing that. And then towards the end the arms would just hang (Baxter et al., 2002, pp. 10–11).

Even the partners with dementia noticed the loss caused by their condition. One wife with dementia described this loss: ‘I’m not who he married anymore. There’s pieces of me missing. There are little pieces of me sort of breaking away . . . ’ (Harris, 2009, p. 70). Husband Brian described the gradual loss as a barrier forming between himself and his wife: . . . it’s like a wall being built ... and that as the person sort of deteriorates, there is another brick that goes in the wall . . . it seems to me that one day you will be putting the last brick in and my wife will be that side and I will be this side. (O’Shaughnessy, 2010, p. 246).

In summary, there was a view reported by some spouses that dementia resulted in a loss of their marital partner. It was described as a loss of the person within, despite their continued physical presence. Loss of a marriage. Intertwined with the loss of a partner was the loss of the marriage. This reflected the growing doubts about the status of the marriage that accompanied the concerns about losing a partner. Both husbands and wives started questioning whether they were still married. However, it was evident from the studies that there was considerable confusion among husbands and wives. Some spouses held onto their marriage regardless of the dementia. However, other spouses felt that they no longer had a marriage, reflecting the ‘unmarried-marrieds’ described by Kaplan (2001). There was also some evidence of spouses starting to look towards the future and considering new social connections. As the dementia advanced, confusion about the status of the marriage increased. Some spouses held firm to their marriage vows: one husband said ‘we took our marriage vows and all. I said ‘‘I do’’, and we do it until death. That’s the way it’s going to be’ (Sanders & Power, 2009, p. 47). A husband acknowledged that he did not have a marriage, but said ‘I’m devoted to her 100%’ (Kaplan, 2001, p. 92). One spouse said ‘ . . . I still feel married . . . ’ (Baxter et al., 2002, p. 10), and another said ‘[i]t’s kind of stagnant right now, but it’s still a marriage’ (Kaplan, 2001, p. 93). However, Mr B admitted inner conflict about his marriage: ‘I carry on

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visiting for the love of her. I want to go, but I don’t want to because she doesn’t know me’ (Lewis, 1998, p. 225). However, it was evident that some spouses had stepped back from their marriage as a result of the changes in their partner caused by dementia. Mrs P’s husband admitted that ‘I’ve shut off; I’ve put a barrier up around myself . . . ’ (Walters et al., 2010, p. 176). Another wife said: ‘You know, how can you have a marriage? . . . He hasn’t acknowledged me for 3 or 4 years’ (Kaplan, 2001, pp. 94–95). A husband shared a similar view: ‘There really isn’t a marriage, because she doesn’t know and doesn’t understand, can’t speak’ (Kaplan, 2001, p. 92). Some husbands and wives had started to look towards the future and were considering new social connections, friendships and relationships. One husband talked about needing close companionship: it was ‘ . . . a big question mark on my mind . . . whether I should get out and do more . . . in relationships for myself and socialize and such’, but he also admitted that ‘. . . I’ve kind of hoped for it . . . but I haven’t done anything about it’ (Kaplan, 2001, p. 94). A wife said: ‘ . . . I hope that there will be somebody for me, somebody that will care about me as much as [my husband] did’ (Kaplan, 2001, p. 94). Virginia confessed: ‘I have a good friend, known him many years, and he asked me out to dinner . . . ’ (Kaplan, 2001, p. 94). In summary, dementia caused considerable confusion and conflict for husbands and wives in relation to the status of their marriage. Some continued to feel that they were married; others felt they no longer had a marriage. However, it was evident that some spouses had started to look to the future, having accepted the inevitable loss of their partner.

Discussion This review of qualitative research has highlighted the profound effect that dementia has on marriage. Studies describe a gradual change in the marriage that required couples to make adjustments to their daily life. It was a creeping change that was easy to miss at first, but grew over time to impact on all aspects of their lives. The boundaries of husband and wife were challenged on many different levels. There was a slipping in and out of roles as one spouse took over the roles that their partner surrendered. It was a time of confusion because of changing identities, as one spouse became more of a parent, the other more of a child. Physical intimacy declined for many couples, but some discovered an emotional intimacy that helped sustain their relationship. During later stages of dementia, husbands and wives were confused because of the fuzzy boundaries between marriage and widowhood. The two major themes of transition and loss capture the impact of dementia on a marriage. The stories that were uncovered in the literature show that life with dementia is a journey that both husband and wife must share. It is also evident that the changes and losses that have been described above impact on two different levels: on the person and on the couple.

A shared journey The stories demonstrated that dementia brought dramatic changes to the lives of both husband and wife. It was a frightening and uncertain time for both partners. Their life together and their daily routines gradually began to change. As the change gained momentum with the increasing severity of dementia, the impact that it had on their lives

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also increased. While the changes and losses that accompanied dementia impacted on each partner differently, they both shared the experience of change and loss. Therefore one of the consequences of having dementia in the marriage is that both husband and wife must take an unexpected journey together. Partners slipped in and out of roles within the marriage, one person taking on new roles and the other surrendering old ones. The stories highlighted how spouses assisted each other to continue their traditional roles or prepared to take on new, unfamiliar roles. Contact with social networks and the outside world reduced for both partners as friends stepped back, keeping them at ‘ . . . arm’s length’ (Hayes et al., 2009, p. 53). They, in turn, limited the extent to which they went out in public. Both partners were very conscious of the changes caused by the dementia: a wife without dementia said her husband was ‘just not the same person that he was’ (Hayes et al., 2009, p. 56), while a wife with dementia confessed that ‘I’m not who he married anymore’ (Harris, 2009, p. 70). Over time the nature of the relationship, roles and intimacy within the marriage also changed in different ways for each person. The destination of the journey was also dramatically different for each spouse, as one lost a partner to dementia and the other lost themselves.

Impact on the person The descriptions of the impact of dementia evidenced a questioning by spouses about the changes that accompanied it and whether the person that they had married was still present. For example, one husband said his wife was ‘a totally different person’ (Sanders & Power, 2009, p. 47) and a wife said it was ‘ . . . more like death . . . ’ (Kaplan, 2001, p. 93). The stories highlight the changes to the very nature of the person that seemed to be brought about by dementia. These stories show that the spouse with dementia was less able to contribute to the relationship, could not continue with their traditional roles and experienced communication difficulties and behavioural changes. One wife said that it felt as though ‘someone else’s mind’ had been switched with her husband’s (Walters et al., 2010, p. 174); another said ‘that person that I knew is not really there anymore’ (Hayes et al., 2009, p. 55). Partners with dementia also recognised the change within themselves: as one wife said, ‘[t]here’s pieces of me missing . . . ’ (Harris, 2009, p. 70). Therefore, a second consequence of having dementia in the marriage is the threat that it brings to the husband and wife as people. The changes for the spouse with dementia link closely to their identity as a person and to the concept of personhood. Personhood concerns the self-esteem of an individual, their place in a social group, the performance of their roles and the integrity of their sense of self (Kitwood, 1997). It is a social concept, so is shaped by the environment of the person. The loss of a sense of self, or personhood, is a result of the way that others treat and view the person with dementia (Perry & O’Connor, 2002). This highlights the importance of the marital relationship for sustaining the integrity of the person despite the changes caused by dementia. Perry and O’Connor (2002) identified that spouses help to preserve the personhood of their partner by maintaining their continuity as a person, supporting them to do as much as possible for themselves, protecting them from being confronted by their failing abilities and developing strategic ways to deal with the outside world. These strategies were evident in the stories told by spouses, showing that they assisted their partner to continue to fulfil their traditional roles, reduced social contact to minimise the risk of their being embarrassed or hurt and found new ways to express the intimacy in their marital relationship. As the severity of the dementia increased and their partner was no

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longer able to recognise them, this preservation of person became much more difficult for spouses. However, even at an advanced stage of the dementia, one wife noted that ‘he’s there if I look for him, you know, he’s there’ (Walters et al., 2010, p. 175). Given that personhood concerns self-esteem, sense of self, place within a social group and performance of roles (Kitwood, 1997), it is evident that the changes and losses caused by dementia also challenged those spouses who did not have dementia. Stories captured spouses questioning their self-identity within the marital relationship. For example a wife thought she was more of ‘a mother’ (Kaplan, 2001, p. 94) and a husband saw himself as ‘a caretaker’ (Harris, 2009, p. 69). Similarly, the shifting in and out of roles threatened the identity of spouses: one husband said he had become ‘the wash lady’ (Daniels et al., 2007, p171) and a wife confessed that she was not used to doing things with ‘drills and hammers and things’ (O’Shaughnessy, 2010, p. 244). This threat concerned the loss of traditional roles within the relationship and views about ‘men’s work’ and ‘women’s work’ within the marriage. It involved wives taking a leadership role within the marriage and becoming handymen, and husbands taking over food preparation and providing personal care for their partner. Therefore the threat to personhood for the spouse without dementia concerned the many ambiguous losses in the marriage and the uncertainty that they felt about their status as a spouse, partner, companion and friend. The concept of a shared journey is therefore also evident in the way that dementia threatens the husband and wife as people. Both experience a loss of self – one as a result of the cognitive losses due to dementia, the other through the erosion and changes to their roles and responsibilities within the relationship, household and marriage.

Impact on the couple Some of the difficulties faced by husbands and wives related to the confusion surrounding the status of their marriage. For example, one spouse said ‘ . . . I still feel married . . . ’ (Baxter et al., 2002, p. 10), while another stated that ‘[t]here really isn’t a marriage . . . ’ (Kaplan, 2001, p. 92). The changes and losses that accompanied dementia impacted on the nature of the marriage and marital relationship in many different ways and challenged the partnership, closeness and togetherness that the couple shared. As the dementia advanced, spouses increasingly questioned whether they were still a married couple. In recent times there has been recognition of the importance of couplehood to fully understanding the experience of married couples facing dementia (Hellstrom et al., 2005). Couplehood is concerned with the relationship as a whole; it is about friendship, intimacy, support and trust. It also involves doing things together in the marriage (Hellstrom et al., 2005). A positive relationship should strike an appropriate balance between dependence, independence and interdependence (Rønning, 2002). In the stories uncovered during this review it was clear that dementia caused major disruption to the balance within the marriage. As a consequence, the couplehood that the husband and wife shared was also disrupted. This disruption was gradual at first and easy to miss, but it grew over time as the severity of the dementia increased. It was evident in the stories that couples resisted the threats to their marriage and tried to hold onto their relationship for as long as they could. Hellstrom et al. (2007) explored strategies used by spouses to live positively with a partner who has dementia and identified three phases: sustaining couplehood, maintaining involvement and moving on. Sustaining couplehood concerns the efforts that partners make to maintain the quality of

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their life together. It was evident in the stories that couples attempted to sustain their couplehood through mutual support, caring and respect. Couples attempted to maintain their involvement with each other through doing things together, slipping in and out of roles and adjusting how they interacted. This was particularly evident in the support offered to a partner taking on new roles or trying to sustain old ones. The unrelenting nature of the cognitive decline meant, however, that the end of the journey for one spouse was the necessity to face a future and a new beginning alone. The journey’s end was a time of confusion and uncertainty because of the ambiguous nature of the losses and the fuzzy boundaries between marriage and widowhood.

Conclusion This review explored the impact of dementia through qualitative stories that have been reported in research. These stories highlight the magnitude of the impact that dementia has on the marriage and marital relationship. When one spouse develops dementia, it heralds the start of a process of transformation that will take the husband and wife on an unexpected journey together. It is a time of change and loss for spouses, as individuals and as a couple. As individuals, their traditional roles as spouse, partner, friend and companion are challenged. One spouse must step up and assume new roles; the other must relinquish the roles that helped define their place within the marriage and household. As a couple, dementia challenges the communication, reciprocity and intimacy within the relationship. The changing roles of husband and wife exacerbate these challenges, as spouses question their place within the marriage. During the later stages of dementia, spouses were unsure if their partner was still present and if their marriage still existed. It was a time of great confusion because of the ambiguous nature of the losses and the fuzzy boundaries between marriage and widowhood. References Adams, K. (2008). Specific effects of caring for a spouse with dementia: Differences in depressive symptoms between caregiver and non-caregiver spouses. International Psychogeriatrics, 20(3), 508–520. Atta-Konadu, E., Keller, H., & Daly, K. (2011). The food-related role shift experiences of spousal male care partners and their wives with dementia. Journal of Aging Studies, 25, 305–315. Baxter, L., Braithwaite, D., Golish, T., & Olson, L. (2002). Contradictions of interaction for wives of elderly husbands with adult dementia. Journal of Applied Communication Research, 30(1), 1–26. Beeson, R. A. (2003). Loneliness and depression in spousal caregivers of those with Alzheimer’s disease versus non-caregiving spouses. Archives of Psychiatric Nursing, 17(3), 135–143. Braun, M., Mura, K., Peter-Wight, M., Hornung, R., & Scholz, U. (2010). Toward a better understanding of psychological well-being in dementia caregivers: The link between marital communication and depression. Family Process, 49(2), 185–203. Calasanti, T., & Bowen, M. (2006). Spousal caregiving and crossing gender boundaries: Maintaining gendered identities. Journal of Aging Studies, 20, 253–263. Daniels, K., Lamson, A., & Hodgson, J. (2007). An exploration of the marital relationship and Alzheimer’s disease. Families Systems and Health, 25(2), 162–177. Evans, D. (2002a). Database searches for qualitative research. Journal of the Medical Library Association, 90(3), 290–293. Evans, D. (2002b). Systematic reviews of interpretive research: Interpretive data synthesis of processed data. Australian Journal of Advanced Nursing, 20(2), 22–26.

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David Evans is a Senior Lecture at the School of Nursing and Midwifery at the University of South Australia. His research focuses on the support for older people and family carers, and dementia and its impact on families. Emmanuel Lee, At the time of this project Emmanuel Lee was an undergraduate nursing student at the School of Nursing and Midwifery, University of South Australia. He was the recipient of a ‘UniSA – High Achiever Summer Vacation Research Scholarship’ which supported his participation in this research.

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