Experiences and needs of spouses of persons with young‐onset frontotemporal lobe dementia during the progression of the disease

Johannessen, Aud; Helvik, Anne-Sofie; Engedal, Knut; Thorsen, Kirsten

doi:10.1111/scs.12397

Cited by 48 publications

(94 citation statements)

References 27 publications

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“…As some informants reported, can continuity with partners and families be experienced as destructive when they are not able to tolerate the changes in personality that dementia implies. Studies have documented the great burden that family members experience caring for people with advanced dementia—“It is a torment.” Other people retract, the family carers become isolated, and they lose their own autonomy and personal life world ( Johannessen, Helvik, Engedal, & Thorsen, 2017). …”

Section: Discussionmentioning

confidence: 99%

“To be, or not to be”: experiencing deterioration among people with young-onset dementia living alone

Johannessen

Engedal

Haugen

et al. 2018

International Journal of Qualitative Studies on Health and Well

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Having dementia before the age of 65 (YOD) represents a radical break from an age-normative and expected life course. The disease afflicts the person’s identity, threatens the self-image and self-confidence, and erodes the person’s plans. The aim of the study was toexamine how people living alone with YOD perceive the course of dementia, their needs, and coping strategies, with a focus on narrating everyday life experiences. A longitudinal study using a qualitative approach was used. Five interviews, each with 10 informants, took place every 6 months from 2014 to 2017. The main theme is the person’s experiences of changes of identity over time. The most significant aspects of their experiences of the dementia affecting them and their reactions are these: the initial signs, coping efforts, concealing the diagnosis, social retraction, existential anxiety, revival of the self, worse and worse, and health personnel as background. The study concluded thatpeople with dementia are able to describe their experiences and needs for a long time during the progression of dementia. Their voices should be listened to for planning of services. Personalized care should be used to support them in order to preserve their identity in a normalized everyday life as far as possible.

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Section: Discussionmentioning

confidence: 99%

“To be, or not to be”: experiencing deterioration among people with young-onset dementia living alone

Johannessen

Engedal

Haugen

et al. 2018

International Journal of Qualitative Studies on Health and Well

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“…Together they express being the ones who steer the situation, help the couple to move forward in their lives together and devise coping strategies. As Ask et al (2014), Eloniemi-Sulkava et al (2002) and Johannessen et al (2017) suggest, a dementia condition affects the quality of life of family members over a number of years. Spouses need to find coping strategies to maintain their own health and marriage, and at the same time be a caregiver.…”

Section: Discussionmentioning

confidence: 99%

“…As these disabilities and symptoms increase in severity as the condition progresses, the person suffering from dementia often requires 24-h supervision (Cerejeira, Lagarto, & Mukaetova-Ladinska, 2012). Importantly, dementia does not only affect the person with the condition, but also the quality of life of family members (Ask et al, 2014;Eloniemi-Sulkava et al, 2002;Johannessen, Helvik, Engedal, & Thorsen, 2017).…”

Section: Introductionmentioning

confidence: 99%

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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“…As most persons with dementia live at home (Ludecke et al, ; World Alzheimer Report, ), dementia affects not only the person with the disease, but also the family, commonly the partner (Johannessen, Helvik, Engedal, & Thorsen, ; Liu et al, ; Wadham, Simpson, Rust, & Murray, ). Research shows that spousal carers feel they are losing their partners due to an inability to share thoughts, feelings and experiences as a couple (Ask et al, ; Pozzebon, Douglas, & Ames, ).…”

Section: Introductionmentioning

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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Experiences and needs of spouses of persons with young‐onset frontotemporal lobe dementia during the progression of the disease

Cited by 48 publications

References 27 publications

“To be, or not to be”: experiencing deterioration among people with young-onset dementia living alone

“To be, or not to be”: experiencing deterioration among people with young-onset dementia living alone

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

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

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