Aim: To determine the perceived needs of carers of non-institutionalized family members that suffer from dementia.
Methods: Two-steps qualitative study by focus groups of relatives in three centres of different characteristics from the Girona Health Region (step 1) and two in-depth interviews with significant professionals in dementia care (step 2). The analysis was performed based on the interpretation of the transcribed data and the bottom-up coding of categories and themes. The information was triangulated and coding was agreed upon.
Results: There were three groups, 26 main carers of community-dwelling relatives with dementia in step 1 and two in-depth interviews with dementia-specialised healthcare and social care professionals in step 2. The demands were categorised according to three main themes: whether they were addressed to the members of care services for more direct and close care, to the agencies for a better joint working and less fragmented system, or to society for better comprehension and social recognition. We emphasize the need for a consultation-liaison reference figure throughout the process both for aspects of greater efficiency in the management of resources and for greater empowerment of carers.
Keywords: Alzheimer’s; carer; dementia; mental health; needs; resources.