The Unique Experience of Spouses in Early-Onset Dementia

Abstract

To date, few studies have examined the experience of spouse caregivers living with a person with early-onset dementia. Moreover, few support resources are offered to these family caregivers and fewer are still tailored to their unique trajectory. The aim of this qualitative study was to document the lived experience of spouse caregivers of young patients in order to inform the development of professional support tailored to their reality. A sample of 12 spouses of persons diagnosed with dementia before the age of 65 participated in semistructured interviews. Six themes emerged from their caregiver trajectories, namely, difficulty managing behavioral and psychological symptoms, long quest for diagnosis, nondisclosure to others and denial of diagnosis, grief for loss of spouse and midlife projects, difficulty juggling unexpected role and daily life responsibilities, and difficulty planning for future. Results open up innovative avenues for the development of interventions geared to facilitating role transition for these spouse caregivers.

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

“…Spouses experienced some changes in their partners' behaviour and personality (Ducharme, Kergoat, Antoine, Pasquier, & Coulombe, 2013;Quinn, Clare, Pearce, & van Dijkhuizen, 2008). Nevertheless, spouses sought alternative explanations for their partners' unusual behaviour, such as stress, depression or workload (Ducharme et al, 2013); but when the diagnosis was disclosed, it was experienced as a relief and as an explanation of the irregular behaviour; but it was otherwise linked to uncertainties about future life changes (Ducharme et al, 2013;Quinn et al, 2008).…”

“…Nevertheless, spouses sought alternative explanations for their partners' unusual behaviour, such as stress, depression or workload (Ducharme et al, 2013); but when the diagnosis was disclosed, it was experienced as a relief and as an explanation of the irregular behaviour; but it was otherwise linked to uncertainties about future life changes (Ducharme et al, 2013;Quinn et al, 2008). Disclosure of the diagnosis gave rise to a difficult situation, often accompanied by a transitional period of shock.…”

“…Spouses tended to downplay their partners' problems in the beginning, and denied the fact that their partners had dementia and were unwilling to accept the diagnosis (Quinn et al, 2008). Spouses tried to manage the disclosure by apprehending their circumstances and trying to understand aspects of the disease (Ducharme et al, 2013). Spouses tried to normalise their circumstances while at the same time acknolweding the need to accept the diagnosis and manage the situation; and they tried to stay independent but realised a needed to stay more at home; they gave up activities and interests and felt isolated from friends and family (Quinn et al, 2008).…”

“…Some spouses found it difficult to share the diagnosis with others because of taboo and stigma associated with the disease, leading to the perception that it was a marital concern only (Ducharme et al, 2013). Some spouses sought isolation as they feared not being understood by their closest relations (Ducharme et al, 2013;Quinn et al, 2008).…”

RHAPSODY – Internet-based support for caregivers of people with young onset dementia: program design and methods of a pilot study

“…Although the prevalence of YOD is much lower than that of dementia in later life (Harvey et al, 2003;Mercy et al, 2008), it has a more severe impact on affected individuals and their informal carers. This is due to: high frequency of problem behaviors (Sansoni et al, 2014); disruption of family relations (Svanberg et al, 2014) including partnership and intimacy (Harris, 2009), and often involving children (Millenaar et al, 2014); frequent conflicts between the caring role and other family or professional responsibilities (Ducharme et al, 2013); significant economic consequences due to early retirement or reduced working hours. People with YOD and their informal carers are an underserved group, because correct and timely diagnosis of YOD as well as appropriate counseling and medical treatment may be difficult to obtain (Mendez, 2006).…”