Predeath Grief, Resourcefulness, and Perceived Stress Among Caregivers of Partners With Young-Onset Dementia

Abstract

More than 200,000 Americans are currently diagnosed with young-onset dementia (YOD). YOD is dementia diagnosed prior to the age of 65. Most persons of YOD are cared for by their partners. Using the theoretical framework of Resilience Theory, this cross-sectional, correlational study examined the moderating effects of personal and social resourcefulness on the relationship between predeath grief and perceived stress among 104 YOD caregiving partners (life partners/spouses) using an online survey platform. Results indicated a large positive correlation between predeath grief and caregiver perceived stress ( r = .65; p < .001). Together predeath grief, personal resourcefulness and social resourcefulness explained 51.5% of the variance in perceived stress. Personal resourcefulness did not moderate the relationship. Social resourcefulness did positively moderate this relationship between predeath grief and perceived stress. These findings allow for a better understanding of the caregiving experience for a partner with YOD and creates opportunities for future research studies.

Usefulness and acceptability of an animation to raise awareness to grief experienced by carers of individuals with dementia

“…Studies have demonstrated that individuals from diverse cultural backgrounds experience and express grief in different ways (Rosa & Fuentes, 2020;Stroebe et al, 2008;Sun, Ong, & Burnette, 2012), and this may have impacted the way the participant received the animation. Additionally, it is also possible that early onset dementia may be a different carer experience that could have also influenced how this participant received the animation (Kobiske, Bekhet, Garnier-Villarreal, & Frenn, 2019).…”

Dementia care and treatment issues

“…The survey design reflected the theoretical framework of Resilience Theory and examined the effects of personal and social relationships, pre-death grief and stress of this caregiving role. There was a large positive correlation between pre-death, grief and caregiver perceived stress, which was positively impacted by social resourcefulness 6…”

“…The second theme explores the experiences and challenges of carers for those with dementia and cognitive decline. The first commentary about research by Kobiske et al 6 describes the outcomes of a cross-sectional, correlational study that investigated the experiences of caregivers for people with young-onset dementia. The survey design reflected the theoretical framework of Resilience Theory and examined the effects of personal and social relationships, pre-death grief and stress of this caregiving role.…”

Help seeking increases stress among caregivers of partners with young-onset dementia

“…Many are of working age and lack social support networks available to older carers and have other caring roles, parenting children or supporting older relatives. Kobiske et al 2 equated such loss to predeath grief (PDG), which is widely recognised among caregivers of people with dementia 3. PDG is associated with increased stress and contributes to mental and physical health problems.…”

“…PDG is associated with increased stress and contributes to mental and physical health problems. Resourcefulness takes two forms, personal resourcefulness ‘self-help’ and social resourcefulness ‘help seeking’ and protects well-being in carers of older onset dementia2 This study tests whether resourcefulness also offers protection to carers of partners with YOD.…”