Living with a partner with dementia: a systematic review and thematic synthesis of spouses' lived experiences of changes in their everyday lives

Abstract

Objectives: Dementia causes dramatic changes in everyday-living for spouses. Occured changes in marital relationship, force spouses to perform more both mentally and physically. Leading to a spousal perceived burden. To improve understanding of spouses' needs, spouses lived experiences is needed. The aim was to identify and synthesise qualitative studies on spouses' lived experiences of living with a partner with dementia. Methods: A systematic search was undertaken in January 2017. Six databases (CINAHL, Cochrane Library, Embase, PubMed, PsycINFO and Sociological Abstracts) were searched, using search terms in accordance with PICo. A descriptive synthesis and a thematic synthesis were undertaken. Findings: Fifteen studies met the inclusion criteria. Three themes derived from the analysis 1) Noticing changes in everyday life 2) Transformation to a new marital relation in everyday life, with corresponding sub-themes; changes in marital relationship, management of the transitioned marital relation in everyday life 3) Planning the future. Conclusion: Findings provide an overview of how spouses notice changes and transform their marital relationships in everyday-life. Findings offer a deeper understanding of changes that occurs over time while the partner is living at home. Findings contribute with knowledge on spouses' experiences of changes in early-stages of dementia. Interventions supporting spouses are needed.

“Doing Things Together Is What It’s About”: An Interpretative Phenomenological Analysis of the Experience of Group Therapeutic Songwriting From the Perspectives of People With Dementia and Their Family Caregivers

“…The health and wellbeing of people with dementia and their family caregivers is highly interconnected, requiring acknowledgment of unique individual and shared relational lived experiences (McGillick and Murphy-White, 2016). Research has attempted to elucidate the lived experiences of people with dementia (Wolverson et al, 2016;Low et al, 2017) and family caregivers (McCabe et al, 2016;Egilstrod et al, 2019;Hennings and Froggatt, 2019), although the perspectives of people with dementia have received less research attention (Thompson et al, 2020). Findings suggest that people with dementia seek to maintain or adjust self-identity, engage in meaningful activities, and continue personal growth, while contending with experiences of public-and self-stigma and concerns about lack of control in the present and future (Milne, 2011;Wolverson et al, 2016;Low et al, 2017;Nguyen and Li, 2020).…”

“…Findings suggest that people with dementia seek to maintain or adjust self-identity, engage in meaningful activities, and continue personal growth, while contending with experiences of public-and self-stigma and concerns about lack of control in the present and future (Milne, 2011;Wolverson et al, 2016;Low et al, 2017;Nguyen and Li, 2020). Family caregivers, whether cohabitating or living separately because their family member with dementia resides in a care home, also recognize concerns about the future, managing role and relationship changes, and meeting their own personal, physical and psychological health and wellbeing needs (McCabe et al, 2016;Egilstrod et al, 2019;Hennings and Froggatt, 2019). Importantly, both people with dementia and family caregivers recognize the impact of social interaction, partnerships and connection on sense of self and wellbeing, highlighting the need for social support, meaningful relationships, and empathic group experiences (Milne, 2011;Hennings and Froggatt, 2019).…”

Rehabilitation for People Living with Dementia: A Scoping Review of Processes and Outcomes

“…The search was adopted to the individual databases. The search terms “Dementia” and “Alzheimer Disease” are broad MESH terms including “Lewy Body Disease,” “Vascular Dementia,” and “Frontotemporal Dementia.” The search strategy was developed in cooperation with an experienced librarian and through inspiration from previous systematic reviews [24, 39, 40].…”

Living With Cognitive Impairment in China: Exploring Dyadic Experiences Through a Person-Centered Care Lens

“…Some studies discuss negative effects of living with dementia on the quality of their marital relationship (Ducharme et al, 2013; Wawrziczny et al, 2016). Some other studies explored the potential positive effects of living with cognitive impairment on their relationship from spouses’ perspectives by re-establishing a sense of marital closeness (Boylstein & Hayes, 2012; Egilstrod et al, 2019).…”