WHY AREN’T PEOPLE WITH YOUNG ONSET DEMENTIA AND THEIR CAREGIVERS USING FORMAL SERVICES?

Abstract

Background:Despite reporting high levels of burden, caregivers of people with young onset dementia (YOD) underuse formal services. Previous quantitative studies in YOD demonstrated that service use is only tenuously associated with dementia specific factors, such as severe functional impairment. These studies are of limited utility in guiding service design because they did not consider important contextual barriers to service use. Methods: 93 people with YOD (mean onset age 55.1yrs) and/or primary caregivers reported knowledge and use of a list of services, and reasons for non-use. Current dementia severity, functional impairment, behavioural and psychological symptoms of dementia (BPSD), caregiver burden, social network, and informal care provision were assessed, excluding 16 participants no longer cared for by a family caregiver. Results: Although at least one service was recommended to most participants (96.8%), 66.7% chose not to use one or more of these. Non-use was not related to any dementia or caregiver factors, including age, sex, severity of impairment, functional disability or BPSD, caregiver burden, social network, or required informal care. Nearly a quarter (24.7%) of caregivers reported that a service was not needed, but this did not mirror the objective need for support indicated by burden, informal care requirements, dementia severity or BPSD. Barriers to use were otherwise service-related, particularly the lack of services specific to YOD patients (chi2=23.3, p