This study highlights the need to consider sons' role as care managers for their parent with dementia in community-based settings, as well as their need for education and intervention. Occupational therapy practitioners can use this information to inform their practices and support clients and their families.

No abstract

Caregiving experiences are not static. They change across the disease trajectory and care continuum. However, it is not clear how caregiver gender or relationship type is related to evolving caregiver experiences over time. This qualitative study informed by constructivist grounded theory and framework analysis explored the experiences over time of men and women who were adult children and spousal caregivers to persons with Alzheimer’s disease. Forty spousal (10 husbands and 10 wives) and adult children (10 sons and 10 daughters) caregivers to persons with Alzheimer’s disease were interviewed using a semi-structured interview guide. Our findings suggest the experiences of caregiving, examined through a gender and relationship type lens, are complex and variable. The caregiving experience was not related to gender or relationship type alone, but often to a combination of the two. For instance, spousal caregivers did not immediately accept the diagnosis, with wives being more optimistic than husbands about a slow progression of the disease. Adult children caregivers were concerned about the ways the caregiving role would impact their personal and career obligations and sought ways to mitigate the changes to their daily lives. Sons and husband caregivers largely utilized home and community health services to assist with personal care tasks, whereas daughters and wives utilized the same services to allow them to complete other caregiving tasks (e.g., housekeeping). Recognition of the complex inter-relationships among gender and relationship type on caregiving experiences supports the need for family-centered interventions. This article also extends sex and gender research as it highlights that an in-depth understanding of the caregiving experience cannot be understood by gender alone and relationship type must also be considered.

Health and social care services can enhance the community experiences of people with Alzheimer's disease and their caregivers but making decisions about service use is complex. Using a grounded theory methodology, we explored service use decisionmaking in 40 spousal and adult children caregivers for people with Alzheimer's disease across the caregiving and disease trajectory. Participants' perception of their initial service interactions influenced their decision-making process and use of services. Difficulties navigating the healthcare system and finding available services also influenced decision-making. Caregivers make decisions to sustain care in the community that change throughout the caregiving and disease trajectory. Two key factors influence service use (a) the goals of caregiving and (b) the practicalities of accessing services. Both factors change across caregiving phases. By expanding our understanding of how caregivers make service use decisions, we can augment future practice to help caregivers access services that can better support them across the disease trajectory.