Perceptions of the Caregiving Role Among Young-Onset Dementia Adult Child Caregivers

Abstract

Background: Persons who receive a dementia diagnosis before the age of 65, are considered to have young-onset dementia. For many persons living with young-onset dementia, adult children take on caregiving roles. Evidence shows that there are many challenges for adult child young-onset dementia caregivers, such as issues with balancing relationships, maintaining a career, overcoming stigma, and their inability to cope. However, despite these difficulties, many adult child caregivers of persons living with young-onset dementia report that they do not receive adequate age-appropriate services and supports. Currently, a limited amount of research has explored perceptions of adult child caregivers of persons with young-onset dementia, although it has been recommended for further inquiry.

Objective: The objective for this research was to describe the perceptions of the caregiving role from the perspective of adult child caregivers of persons living with young-onset dementia.

Methods: A qualitative descriptive design was used to describe the perceptions of adult child young-onset dementia caregivers. Recruitment was through various organizations and support groups across Canada. Purposive sampling was utilized, including both snowball and convenience sampling. Individual semi-structured interviews were conducted with 15 adult child caregivers with a parent with young-onset dementia. The interviews were audio-recorded, transcribed verbatim, and analyzed using conventional content analysis.

Findings/Discussion: Four themes emerged from the data: 1) caregiving impacts are all-encompassing, 2) coping with the impacts of caregiving, 3) finding supports that fit my needs, and 4) managing changes during the COVID-19 pandemic. These themes suggest that there are many ways that the adult child caregivers are impacted by young-onset dementia. Participants expressed that caregiving had required them to take on many different responsibilities and roles. Various coping techniques were identified regarding how to manage the impacts of their caregiving role. The participants spoke of both formal and informal supports they had accessed, as well as suggestions for future services. Finally, there were varying degrees in which the COVID-19 pandemic had shifted the caregiving roles for all participants.

Conclusion: The findings of this study provide a better understanding of the perceptions of adult child caregivers for persons living with young-onset dementia in Canada. These findings can assist with the development of age-appropriate resources, services, and supports for this population. This study also highlights the need for the expansion of future research to learn more about the perceptions of adult child caregivers for persons with young-onset dementia.