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Experiences of everyday life and the new normality as a spouse and carer of a person with dementia; the support they receive and the support that they need Passed

Tuesday May 14, 2024 15:44 - 16:30 Poster Arena

Presenter: Marcus Falk Johansson

Track: Informal Care and Support, Posters

Poster can be found in location 16.

Health and social care providers should aim to include family carers in the planning and delivery of care of persons with dementia, following a person-centered approach. However, caring for a person with dementia may impact the carer, and spouse carers have been found to be especially vulnerable to negative outcomes of caring and in need of support. Yet, support is often generic, and uptake is low. The aim of the present study is to explore how persons who care for a cohabitant spouse with dementia experience everyday life, how they manage difficulties and how they are supported. The study employs an explorative qualitative design with semi-structured interviews with spouse carers aged 65 years old or older (n= 24), using the six-stage approach to reflexive thematic analysis with descriptive and interpretive coding. The thematic analysis generated three integrated themes: Finding a new normality in everyday life, Being together an apart from my partner and Finding support while needing more. Study findings indicate that spouse carers experience a disruption of ageing together as a couple when their partner receives a dementia diagnosis, that requires them to re-evaluate their everyday life and their relationship and to form a new normality with dementia. They also express how transitioning into caring may be indicative of losing the role as spouse and becoming a carer. While being offered support, it often lacked person-centeredness, as support often focused more on their partners’ dementia rather than their individual needs. Our findings suggest that health and social care providers need to focus on early interventions for spouse carers to ameliorate the disruption caused by dementia. Support should focus on maintaining the spouse carers’ personhood, as they often lose themselves into caregiving, while also strengthening the couple by offering support to both the carer and the person with dementia. 

Language

English

Seminar type

Poster

Conference

GCPCC

Authors

Marcus Falk Johansson, Lena Marmstål Hammar, Lena Dahlberg, Christine Williams, Kevin McKee, Martina Summer Meranius

Lecturers

Profile image for Marcus Falk Johansson

Marcus Falk Johansson Presenter

PhD, Lecturer in Social Work
Dalarna University

PhD in Care Sciences, MA-SW, BSc-SW, Social worker