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

Abstract

This study aimed to understand how adult children sustain caring for persons with dementia (PwDs) within their family and formal care contexts in Canada. Half-day focus groups were conducted with adult daughters and adult sons in Toronto, Canada. Using constructivist grounded theory, we examined both substantive concepts and group dynamics. Sustaining care was interpreted as an indefinite process with three intertwined themes: reproducing care demands and dependency, enacting and affirming values, and “flying blind” in how and how long to sustain caring (i.e., responding to immediate needs with limited foresight). Family values and relationships, mistrust toward the institutional and home care systems, and obscured care foresight influenced care decisions and challenged participants in balancing their parents’ needs with their own. Positive and negative aspects of care were found to influence one another. The implications of these findings for research and policy are discussed.

The experience of children with parents diagnosed with young onset dementia: a systematic literature review

“…The findings of loss identified from this review are different from older children with a parent diagnosed with late onset dementia (Hwang et al 2017). Older children experienced family conflicts in relation to caring responsibilities, and the need to explore approaches to sustain caring for their parent (Hwang et al 2017). However, the similarities of changing roles and care responsibilities demonstrate the need for appropriate social support for the person living with dementia, which will simultaneously support the needs of the person's family.…”

“…The findings of loss identified from this review are different from older children with a parent diagnosed with late onset dementia (Hwang et al 2017). Older children experienced family conflicts in relation to caring responsibilities, and the need to explore approaches to sustain caring for their parent (Hwang et al 2017).…”

Exploring How Persons with Dementia and Care Partners Collaboratively Appropriate Information and Communication Technologies

“…When persons with dementia are supported by care partners in technology appropriation, there may be opportunities to enhance their care relationship through mutual empathy-building, learning, and cooperation. This may support care partners in sustaining their roles, as learning, skill development, and nourishing relationships may be highly meaningful and personally affirming to care partners [9,25]. Reciprocally, persons with dementia may feel better understood and supported by care partners, and develop a greater sense of inclusion, connectedness, and belonging-the meanings that persons with dementia have been found to pursue through their activity engagement [57].…”

“…Toward enriching experiences for persons with dementia, greater attention to their relations with family care partners has been recommended [1,25,28]. Several technological studies have reported differing needs and values between persons with dementia and their care partners, and some have challenged that technology tends to be biased toward the priorities of care partners (e.g., safety, security) [2,19,66], thus marginalizing the concerns of persons with dementia themselves.…”

“…Persons with dementia and their care partners have been found to primarily devise "do-it-yourself" solutions [e.g., information and communication technologies (ICTs), adaptations of everyday household products] and, secondarily, privately purchase "off-the-shelf" technologies (e.g., "dementia-friendly" products) [20]. Such trends would appear to be facilitated by the limited public resources available for assistive technology (AT) provisioning [20] and specialized dementia care services [25,63,70]; the stigma that persons with dementia and care partners feel is avoided with the use of everyday mainstream (versus specialized or assistive) products [54,61]; the greater accessibility of touchscreen devices by persons with dementia [29,64]; and the need for individualized solutions [1,2,22,54]. While a few longitudinal studies have examined how persons with dementia and care partners adopt ATs [40,59], less is known about the processes by which mainstream or specialized ICTs are adopted and adapted into everyday practices.…”