From diagnosis to end of life: Evolving training and support needs of caregivers of seniors living with Alzheimer’s disease
Véronique Dubé, Nouha Ben Gaied, Laurence Caron, Karine Thorn- Psychiatry and Mental health
- Cellular and Molecular Neuroscience
- Geriatrics and Gerontology
- Neurology (clinical)
- Developmental Neuroscience
- Health Policy
- Epidemiology
Abstract
Background
No one is prepared for a diagnosis of Alzheimer’s disease, either the person diagnosed or the caregiver. In order to cope with the disease and support their loved ones, caregivers express numerous needs for training and support. But what are these needs at each stage of the disease?
Method
As part of an action‐research project, 8 focus groups and 28 individual interviews held on the Zoom platform were used to collect the training and support needs of caregivers of seniors living with Alzheimer’s disease in the province of Quebec, Canada. A content analysis inspired by the approach proposed by Miles and Huberman was conducted.
Result
A total of 52 caregivers, aged between 33 and 85 years old (mean = 61,88; SD = 12,42), identified training and support needs: a) surrounding the diagnosis; b) during the assistance of the loved one at home, with and without cohabitation; c) during accommodation in a long‐term care facility and; d) following the death of the person being cared for.
Conclusion
Caregivers have training and support needs that evolve according to the trajectory of their loved one’s Alzheimer’s disease. Interventions tailored and personalized to their pathway are necessary to support them in this long trajectory of caregiving.