Together but apart: Caring for a spouse with dementia resident in a care facility

Abstract

This longitudinal, exploratory study was designed to better understand the lived experience of spousal caregivers age 60 and older providing care to partners with Alzheimer's disease and related dementias resident in a care facility. Twenty eight spousal caregivers were interviewed up to three times over a period of 2 years, and long-term care facility staff from four locations across British Columbia (BC), Canada participated in four focus groups. Thematic analysis of interview and focus group transcripts revealed a central, unifying theme 'together but apart'. The results identify key targets for policy makers and service providers to support positive health and well-being outcomes for spousal caregivers providing care to their partners diagnosed with Alzheimer's disease and related dementia and living in care facilities.

Behavioural Changes in Dementia and their Impact on Professional Caregivers: A Grounded Theory Approach

“…Furthermore, this study provided further support for previous research that has investigated the relationship changes that occur for spouses and family members (Hemingway et al, 2014;Ritchie & Lovestone, 2002) of individuals who move into a residential facility. The core category developed in this research was that 'Developing behaviour in dementia impacts relationships on a personal and professional level'.…”

“…This often has, as a consequence, a tendency to visit the resident increasingly less. As visits become less frequent, the resident is perceived by the professional as less respondent to family members and increasingly more attached to the professional caregiver instead (Hemingway et al, 2014). In fact, this clear decline of relationships between family members and residents might yet again be attributable to a lack of understanding of the condition (Stokes et al, 2014) and of the most adequate coping mechanisms that might help to mitigate such negative feelings.…”

The experiences of family caregivers of people with advanced dementia living in nursing homes, with a specific focus on spouses: A narrative literature review

“…Seven papers included participants who were exclusively spouses or long term partners of people with dementia (Ford et al, 2013;Førsund et al, 2015;Hellström et al, 2007;Hemingway et al, 2014;Høgsnes et al, 2014;Kaplan, 2001;Mullin et al, 2013). The remaining five papers included a variety of family members and spouses in various proportions.…”

What is an older husband’s experience of caring for his wife who has dementia?

“…Coping strategies can be put in place (Dementia UK 2019) to allow the husband to continue looking after his wife for as long as he wishes. In order to prevent the marginalisation of men in groups dominated by female carers (Kirsi et al 2004), nurses can advocate for male caregivers' needs by promoting screening for referrals to male-only support groups in the community (Hemingway et al 2016). Hellstrom et al (2017) concur, proposing that health professionals need to remain sensitive to men's doubt regarding their role as a caregiver.…”