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

Abstract

Dementia affects individuals, families and their relationships. While there is increasing evidence about the experiences of family caregivers of people with dementia, relatively little is known of their experiences when their relatives are living in nursing homes with dementia. This narrative literature review aimed to synthesise current knowledge about family caregivers' experience of having relatives living in nursing homes with advanced dementia, particularly focussing on community-dwelling spouses. Using a systematic approach, textual narrative synthesis was undertaken. Four themes were identified: changing relationships, the need for companionship, adjusting to new roles and relationships and anticipating death/looking towards the future. Two additional themes were present only for spouses: changing identity - feeling married, being married; and alone but… The review demonstrates that some aspects of spouses' experiences are different from those of other family caregivers. Longitudinal studies are required to better understand spouses' motivations to continue caring in this context and to find ways of supporting them.

Improving Dignity of Care in Community-Dwelling Elderly Patients with Cognitive Decline and Their Caregivers. The Role of Dignity Therapy

“…With respect to this, a person-centered approach that seeks to maintain dignity in older persons with cognitive decline [17,18] is not possible without including their informal caregivers, usually their close relatives. It therefore follows that targeting dignity and meaning intervention in the affected elder alone, outside of the context of the dyadic relationship with the informal caregiver, cannot be expected to be sufficient to improve mental health and quality of life in those affected by cognitive decline [19]. Therefore, the role of caregivers should be addressed in a more specific way when DT would be applied in a geriatric setting.…”

The key aspects of online support that older family carers of people with dementia want at the end of life: A qualitative study

“…There is growing research exploring the experiences of family carers of people with dementia towards the end of life (Broady, Saich, & Hinton, 2018;Davies, Maio, Rait, & Iliffe, 2014;Hennings and Froggatt, 2016;Hennings, Froggatt, & Keady, 2010;Peacock, 2012;. Studies report a lack of support for family carers (Broady, et al, 2018;Davies, et al, 2014;Hennings and Froggatt, 2016;Hennings, et al, 2010;Peacock, 2012;), a lack of knowledge among family carers about care needs and what to expect at the end of life with a need for more 'information', usually regarding progression and specific medical treatment or symptoms (Broady, et al, 2018;Davies, et al, 2014;Hennings, et al, 2010;Peacock, 2012). However, rarely do studies report on how these support needs could be met for family carers.…”

“…Despite statistics demonstrating internet use is increasing among those over 65 years (Office for national Statistics, 2017), at present this group are the least skilled to use online support (Choi and DiNitto, 2013;Kim, 2015). It is important to target this group to understand if online support would be beneficial to close the support gap that family carers report (Broady, et al, 2018;Davies, et al, 2014;Hennings and Froggatt, 2016;Hennings, et al, 2010;Peacock, 2012;.…”

How can a measure improve assessment and management of symptoms and concerns for people with dementia in care homes? A mixed-methods feasibility and process evaluation of IPOS-Dem

“…These resulted from care home staff confidence and skill, shift work and differing expectations of roles. IPOS-Dem was identified as a potentially useful tool to overcome some of these barriers, thus improving and empowering family engagement in care provision; important to family members [ 63 ]. In addition, the measure if trusted and recognised by both parties, could facilitate communication to external health professionals.…”