Caring for Individuals with Early-Onset Dementia and Their Family Caregivers: The Perspective of Health Care Professionals

The phenomenon of early-onset dementia remains an under-researched subject from the perspective of health care professionals. The aim of this qualitative study was to document the experiences and service needs of patients and their family caregivers for optimal clinical management of early-onset dementia from the perspective of health care professionals. A sample of 13 health care professionals from various disciplines, who worked with individuals who suffered from Alzheimer’s disease or related disorders and their family caregivers, took part in focus groups or semi-structured individual interviews, based on a life course perspective. Three recurrent themes emerged from the data collected from health care professionals and are related to: 1) identification with the difficult experiences of caregivers and powerlessness in view of the lack of services; 2) gaps in the care and services offered, including the lack of clinical tools to ensure that patients under age 65 were diagnosed and received follow-up care, and 3) solutions for care and services that were tailored to the needs of the caregiver-patient dyads and health care professionals, the most important being that the residual abilities of younger patients be taken into account, that flexible forms of respite be offered to family caregivers and that training be provided to health care professionals. The results of this study provided some innovative guidelines for optimal clinical management of early-onset dementia in terms of the caregiver-patient dyad.