Pårørendeinvolvering i planlegging og gjennomføring av helsehjelp til personer med frontotemporal demens

Abstract

Several health policy documents emphasize the need for more knowledge regarding family caregiver`s involvement in implementation of healthcare services for people with dementia. This article examines how family caregivers of people with frontotemporal dementia (FTD) experience involvement, and furthermore investigates whether an activity perspective can be useful to understand barriers to family caregiver involvement. We have used a qualitative method and obtained data through semi-structured in-depth interviews with five family caregivers of people with FTD. The family caregivers described limited involvement and frustration. The analysis presents two main issues that influence involvement: a) access to necessary information and knowledge about the illness and healthcare services and b) health professional attitudes.