Abstract
Dementia is a progressive and debilitating condition. Estimates suggest that globally, 55 million people live with dementia. Population aging means these figures are set to rise significantly. This research examines the lived experiences of those living with dementia and their family carers. We conducted this study in collaboration with a UK hospice offering a course for carers. We asked people to tell their stories from pre-diagnosis to the present day. The final sample (n =33) comprises 5 people with dementia, while the rest are family carers. We uncovered a journey beset by delays, access barriers, power struggles, and fear. Early delays stemmed from reluctance, of patients and their families, to admit to a problem and seek help. Complaints that medical professionals failed to listen to family members led to perceptions of a power imbalance between provider and service user. In turn, this led to diagnosis delays, and feelings of frustration and vulnerability among carers as they struggled alone. Post-diagnosis, feelings of isolation and fear arose partly from contemplation of new role expectations (or demands), and partly from the complexity of the service system they needed to access. Surprise and relief were typical of experiences when people did access the hospice for the carer’s course. Peer support emerged as a key benefit of the course, helping to mitigate experiences of isolation. Nevertheless, overall, we identified major gaps in service provision, both for the people with dementia themselves and a desperate need for support and respite for isolated and exhausted caregivers.
Details
Presentation Type
Paper Presentation in a Themed Session
Theme
Social and Cultural Perspectives on Aging
KEYWORDS
Dementia, Alzheimer's, Vulnerability, Services
