A typology of care-giving across neurodegenerative diseases presenting with dementia

Abstract

The purpose of this study is to develop and extend our understanding of dementia care-giving by introducing a typology of informal care-giving across four different diseases. Care-giving factors were examined with respect to specific dementia presentation in mild cognitive impairment, Alzheimer's disease, dementia with Lewy bodies and Parkinson's disease-associated dementia. Informal care-giving literature in the four diseases was systematically searched to identify specific disease symptoms and resultant care-giving strains and outcomes. Key concepts were extracted and grouped thematically. The first classification, ‘role-shift’, reflects care-giving where cognitive deterioration results in changing roles, uncertainty and relational deprivation among married partners. The second classification, ‘consumed by care-giving’, refers to those caring for persons with dementia-motor decline that greatly increases worry and isolation. Finally, in the ‘service use’ classification, formal support is needed to help care-givers cope with daily responsibilities and behaviour changes. In each case, the dementia presentation uniquely impacts care-giver strains. A major conclusion is that the same support to all care-givers under the umbrella term ‘dementia’ is unwarranted; the development of targeted support is required.

Caregiver Experiences Across Three Neurodegenerative Diseases: Alzheimer’s, Parkinson’s, and Parkinson’s With Dementia

“…Caregivers of persons with neurodegenerative disease face unique challenges because of the cognitive and physical disabilities specific to their care experience and the need to adapt to continuously changing and demanding situations (Zhu et al, 2015). There are very few comparative studies of spouse caregiver experiences across AD, PD, and PDD (Roland & Chappell, 2015). According to Davis and colleagues, PD caregivers were more likely than AD caregivers to describe tensions and care decision conflicts within the care relationship, leading to stress, disagreement, and relational loss (Davis, Gilliss, Deshefy-Longhi, Chestnutt, & Molloy, 2011).…”

Taking Time: A Mixed Methods Study of Parkinson’s Disease Caregiver Participation in Activities in Relation to Their Wellbeing

“…Although not specific to Parkinson's care, Pinquart and Sorensen [48] provided a robust meta-analysis of 200 studies pertaining to gender differences in caregiver stressors. Whilst their data confirmed that the majority of care is provided by wives and daughters (71.5%), they questioned the theoretical frameworks of gender-role socialization (Gilligan, 182), gender-role expectation [49] as previous studies (e.g., [50,51]) had reported inconsistent results, probably because the differences reported, though statistically significant, were generally small.…”

What do we know about older former carers? Key issues and themes

“…However, when the person with dementia dies the carer's status shifts into a ‘new’ type of former carer – that of bereaved former carer. This experience of status‐shift involves a series of transitions, rather than the single move from one status to another, as suggested by the bifurcatory model (Roland & Chappell ). Other caring experiences also challenge this unidirectional model.…”