"When they found her on the side of the road": Family caregiver decision-making and care responsibilities on dementia care


Izumi Niki, University of Toronto; Alexa Carson, University of Toronto; Pelin Gul, University of Toronto

Nearly one million people in Canada are projected to be living with dementia by 2030 (Alzheimer Society 2023). Most of the current studies on dementia focus on medical or nursing issues such as diagnosis, prevention or intervention. Caring for a person with dementia, however, is social and familial as much as it is medical. Drawing on existing care literature based on the critical feminist perspective (Armstrong 2023; Funk and Kobayashi 2009), this research examines how family caregivers' stress and care responsibilities transform over the course of caring for an older person with dementia, and how individual and structural factors influence the decision to seek professional caring assistance. Dementia has profound impacts not only on the individual diagnosed but also on the lives of the people around them (La Fontaine and Oyebode 2014, Duggleby, Schroeder and Nekolaichuk 2013; Pointon 2011; Le Navenec, Lynne and Vonhof 1996). The vast majority of persons with dementia receive informal care, typically from family members; family caregivers of a person with dementia often experience high emotional distress (Law Commission of Ontario 2016; Papastavrou, Kalokerinou, Papacostas, Tsangari and Sourtzi 2007; Wimo and Winblad 2001). To investigate in-depth family care experiences and care arrangements in the Canadian context, our research team conducted semi-structured interviews (from February to June 2023) with 57 family members caring for older adults living in community settings (i.e. their own home or family member's home) and institutional settings (i.e. supportive housing, long-term care home) across Canada. Analysis of their narratives revealed important findings on their care responsibilities and decision-making processes. Dementia is a highly individualized disease, and the progression of symptoms varies considerably. Accordingly, older people's individualized care needs also change. Thus, family caregivers' care responsibilities and tasks are not static but transformed throughout the caregiving process, and definitions of 'good care' vary extensively among research participants. Older people's traits (personalities, preferences, and life patterns) and dementia symptoms (behaviours such as wandering or forgetfulness) are critical factors in determining the family's care tasks. Carers of individuals with dementia grapple with admitting their loved ones into a long-term care facility (LTCH). This is often a difficult decision. The negative image of LTCHs leads many people to avoid admitting older adults to a facility, especially in the wake of the pandemic. Nonetheless, carers also understand that institutions can provide a safer space for older people with dementia. Previous research has shown that people with high emotional distress are more likely to admit an older person to the institutional setting (Gaugler, Yu, Krichbaum and Wyman 2009). Along with intensified care needs due to dementia, external factors like the availability (or more likely lack) of resources (i.e. paid services and other family members) and regional characteristics impact the decision for institutional admission. Not only the care needs and preferences of the person but also the socio-economic status significantly affect their choice. Family members continue to provide care for older adults with dementia post-admission, but they experience less stress. Their care tasks are more attentive to individualized physical care and social and emotional support, which is often believed to be lacking in the institutional setting. While our study confirms existing literature on unpaid work provided by family caregivers in institutional settings, we also show that family caregivers can focus more on improving the quality of life for seniors with reduced stress when daily worries about essential care provision are alleviated through professional support. In this way, institutionalization reduces caregiver stress because caregivers lack the support and services that could alleviate their daily worries in a community setting. Our study on family caregiving experiences for people with dementia suggests the need for micro-level analysis as well as meso (institutional) and macro (provincial and national level policies) level examination. Caring for older adults is a continuous daily activity, and caregivers often make their decisions at a micro level. Nonetheless, their experiences and decision-making occur in a context with limited options and inadequate meso- and macro-level supports. Within that context, our findings indicate that institutionalization has benefits for informal caregivers who are otherwise overburdened. Services and resources in the community could also provide remedies and enable people with dementia to continue to live in their own homes. Moreover, a system that relies on family care to ensure the quality of care in the institutional setting is both unsustainable and destined to reproduce social inequalities.

Non-presenting author: Ito Peng, University of Toronto

This paper will be presented at the following session: