Relationship continuity and emotional well-being in spouses of people with dementia

Riley, Gerard A.; Evans, Laura; Oyebode, Jan R.

doi:10.1080/13607863.2016.1248896

Cited by 45 publications

(32 citation statements)

References 41 publications

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“…Merrick et al () further stated the importance of upholding couplehood. Bielsten and Hellstrom (, ), together with Han and Radel () and Riley, Evans, and Oyebode (), emphasised the importance of strategies based on dedication to the relation as well as to activities experienced together. This was also evident in our results when the couples talked about memories.…”

Section: Discussionmentioning

confidence: 99%

The value of “us”—Expressions of togetherness in couples where one spouse has dementia

Swall

Williams

Hammar

2019

Int J Older People Nursing

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Background: Living with dementia involves both illness and health, and self-care and care from others. As most persons with dementia live in their own homes, dementia affects not only the person with the disease, but also family, commonly the partner.Research shows that spousal carers feel as though they are losing their partners since they can no longer share thoughts, feelings and experiences as a couple.Aim: The aim of the study was to describe the sense of togetherness of the spouses when one spouse has dementia. Method:The sample consists of 18 recorded conversations between 15 persons with dementia and their spouses. The filmed conversations were transcribed verbatim and then analysed using qualitative content analysis. Findings:One overarching theme arose: Dementia preserved and challenged the value of "us." It can be challenging for a couple in which one partner has dementia to preserve a sense of togetherness and to have the relationship they wish for. Conclusion:Based on our results, we suggest that practitioners should help couples to strengthen their bond as a couple so as to maintain a sense of well-being. Future studies should examine couplehood under differing conditions, such as long-versus short-term relationships. Prior relationship quality may also be a factor that influences the sense of couplehood following a serious health challenge, such as dementia. Implication for practice: When spouses were able to live together, their relationship was enriched at many levels. Their love for each other strengthened them as a unit -as an "us" -where togetherness seemed to be strong. Future studies need to examine whether the sense of couplehood varies depending on the length of the relationship (i.e., a relationship of many years or a relatively new relationship).

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Section: Discussionmentioning

confidence: 99%

The value of “us”—Expressions of togetherness in couples where one spouse has dementia

Swall

Williams

Hammar

2019

Int J Older People Nursing

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“…Stokes et al (2014) highlight the fact that stereotypes have consequences for people with dementia, but this study shows that this is also the case for the spouses. It could therefore be said that couplehood (Hellstrom et al, 2007;Hernandez et al, 2017;Myhre et al, 2017;Riley et al, 2018) or the focus on coping strategies (Myhre et al, 2017) could in some cases be quite devastating, in that not only is more weight put on the spouses' shoulders, but that the clash between subject positions can be fuelled and the fragile boundaries left for the spouses as own important subjects erased. This in turn can also affect the spouses' own health.…”

Section: Discussionmentioning

confidence: 99%

“…Couples affected by dementia should be viewed as a unit, rather than two separate individuals, and devise strategies based on their couplehood to maintain the relation, by for example engaging in the relationship, doing things together (Han & Radel, 2016;Hellstrom, Nolan, & Lundh, 2007), having good communications (Williams, 2015;Williams, Newman, et al, 2017a), working things through together and moving on and letting go (Hellstrom et al, 2007). Strategies for maintaining good relations are also highlighted in previous research (e.g., Hernandez, Spencer, Ingersoll-Dayton, Faber, & Ewert, 2017;Myhre, Bjornstad Tonga, Ulstein, Hoye, & Kvaal, 2017;Riley, Evans, & Oyebode, 2018). Myhre (2017has focused on coping strategies for caregiver spouses and the need for them to focus on themselves as subjects in the relation.…”

Section: Introductionmentioning

confidence: 94%

That mr. Alzheimer… you never know what he’s up to, but what about me? A discourse analysis of how Swedish spouse caregivers can make their subject positions understandable and meaningful

Lövenmark

Meranius

Hammar

2018

International Journal of Qualitative Studies on Health and Well

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The spouses of people suffering from dementia are commonly first-in-line caregivers. This can have a considerable effect on their own lives, health and marriages. Several studies have focused on spouses’ experiences, but very few have focused in any depth on their descriptions of themselves as subjects. Therefore, the aim of this study is to describe how spouse caregivers can express themselves when living with and caring for their partners with dementia. The study has a qualitative approach with a discourse analysis design and uses analytical tools such as rhetoric, subject positions and categorization. The results reveal three subject positions: as an actor, as a parent and as a survivor. The results show that as spouses struggle with external and internal clashes as subjects, they therefore need to develop coping strategies. They also experience pronounced loneliness and a risk to their own health. There is thus a need to support these spouses as individuals in their differing and changing needs.

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“…This refers to the carer's experience of the relationship. In continuity the carer feels that the relationship and the person with dementia are essentially the same as the pre-dementia relationship and person, despite the changes that have occurred; in discontinuity, the other person and the relationship are experienced as being radically different (Riley et al, 2013;Riley, Evans, & Oyebode, 2018).…”

Section: Challenging Care Needsmentioning

confidence: 99%

Relationship continuity and person-centred care in how spouses make sense of challenging care needs

Riley

Achiampong

Hillberg³

et al. 2018

Aging & Mental Health

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Objectives: Some spouses providing care for a partner with dementia experience continuity in the relationship: Despite the changes that have occurred, the person with dementia and the relationship are felt to be essentially the same as they were before the dementia. Others experience discontinuity: The person and the relationship feel very different. Previous qualitative research has suggested that continuity may be linked with the delivery of more person-centred care. Using a mixed-methods approach, the present study aimed to provide a more robust test of this claim. Method: Twenty-six spousal carers completed the Birmingham Relationship Continuity Measure and the Caregiver Hassles Scale, and took part in an interview about their response to challenging care needs. Attributions about the causes of those needs were extracted from the interviews and coded. Codes referred either to dementia as a cause, or to a range of other causes that reflected a more person-centred focus. A measure of person-centred care was obtained by calculating the percentage of the total number of attributions that fell into these more person-centred categories. Results: Consistent with the hypothesis that continuity and person-centred care are linked, those who reported greater continuity reported a significantly higher percentage of personcentred attributions. Conclusions: Person-centred care is important for the well-being of those giving and those receiving the care. Little is currently known about how to support families to be more personcentred. The possibility of supporting person-centred care through enhancing the experience of continuity merits investigation.

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Relationship continuity and emotional well-being in spouses of people with dementia

Cited by 45 publications

References 41 publications

The value of “us”—Expressions of togetherness in couples where one spouse has dementia

The value of “us”—Expressions of togetherness in couples where one spouse has dementia

That mr. Alzheimer… you never know what he’s up to, but what about me? A discourse analysis of how Swedish spouse caregivers can make their subject positions understandable and meaningful

Relationship continuity and person-centred care in how spouses make sense of challenging care needs

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