Dementia Care: Intersecting Informal Family Care and Formal Care Systems

Abstract

Dementia is one of the major causes of disability and dependence amongst older people and previous research has highlighted how the well-being of people with dementia is inherently connected to the quality of their relationships with their informal carers. In turn, these carers can experience significant levels of emotional stress and physical burden from the demands of caring for a family member with dementia, yet their uptake of formal services tends to be lower than in other conditions related to ageing. This paper is based on a qualitative study undertaken in the Australian state of Queensland and explores issues of access to and use of formal services in dementia care from the perspective of the informal family carers. It identifies three critical points at which changes in policy and practice in the formal care system could improve the capability of informal carers to continue to care for their family member with dementia: when symptoms first become apparent and a diagnosis is sought; when the condition of the person with dementia changes resulting in a change to their support needs; and when the burden of informal care being experienced by the carer is so great that some form of transition appears to be immanent in the care arrangement.

Sustaining care for a parent with dementia: an indefinite and intertwined process

“…Amidst growing recognition of caregiver needs (e.g., Sinha et al, 2016), our study elucidates a temporal dimension of how adult children may become increasingly vulnerable insofar as financial insecurity due to unforeseen care costs and care demands that threaten their employment, and political disenfranchisement when they lack the wherewithal (e.g., time, knowledge, language, social status) to access formal care services, or when utilizing services threatens their held values. Mistrust in and limited utilization of public home care and institutional care also adds to previous evidence (Singh et al, 2014; Ward-Griffin et al, 2012) that has called for systemic reforms that build trust with informal care partners by responding to their values and priorities (e.g., greater social opportunities and connectedness for PwDs, family care collaboration, financial security). Future work to drive such change may longitudinally examine care journeys and relationships, and the personal, social, and financial impacts to care partners once they are no longer caring for their parents.…”

“…Where prevailing notions assume that caregiver stress and burden are the results of providing PwDs with functional assistance (critiqued by Roth et al, 2015) and managing PwDs’ “behaviours” (critiqued by Dupuis, Wiersma, & Loiselle, 2012b), our study asserts an alternative explanation that stresses the consequences of limited family support and inadequate home and institutional care supports. Others have similarly charged the dominant construction of burden as imprecisely understanding the sources of stress (Roth et al, 2015) and burden (Bastawrous, 2013), and neglecting important structural factors that produce negative consequences for family care partners (Lilly et al, 2011; Singh et al, 2014; Ward-Griffin et al, 2012). While the mismatched logics between informal and formal care systems (Singh et al, 2014) and diminishing formal care support (Ward-Griffin et al, 2012) have been documented, our study adds two novel insights.…”

“…Others have similarly charged the dominant construction of burden as imprecisely understanding the sources of stress (Roth et al, 2015) and burden (Bastawrous, 2013), and neglecting important structural factors that produce negative consequences for family care partners (Lilly et al, 2011; Singh et al, 2014; Ward-Griffin et al, 2012). While the mismatched logics between informal and formal care systems (Singh et al, 2014) and diminishing formal care support (Ward-Griffin et al, 2012) have been documented, our study adds two novel insights. First, a more fundamental issue of “value conflicts” can exist not only between systems but also within informal care networks, including family members who might be expected to share the same ethnocultural values.…”

“…Formal care is provided based on objectivity and efficiency (Lloyd & Stirling, 2011), where lineal time allocations (e.g., 2 h of personal care service) are incongruent with “unshiftable” care tasks, such as personal care (Hassink & van den Berg, 2011, p. 1510). Such a structure of formal care services tends to neglect important priorities held by informal care partners, such as the quality of their interactions and relationships with service providers (Singh, Hussain, Khan, Irwin, & Foskey, 2014). Moreover, current representations of caregiving have typically assumed a single primary care partner, which is challenged by work that has illustrated complex informal care networks (Lingler, Sherwood, Crighton, Song, & Happ, 2008) and changes to these networks over time (Szinovacz & Davey, 2007).…”

Family Physician–Case Manager Collaboration and Needs of Patients With Dementia and Their Caregivers: A Systematic Mixed Studies Review

“…Most non-randomized and quantitative descriptive studies (surveys) reported adequate sampling strategies and measurements. [52][53][54]56,[64][65][66]73,80,85,[87][88][89] Need for early diagnosis (to understand the behavioral problems and gain timely access to resources). …”