Caring for a person with dementia: The results of a participatory research study

Giulia Avancini -

Dementia is a widespread neurodegenerative disease in the Western context, particularly in Italy. It produces significant consequences of various kinds, both for the person who is experiencing the problem and for their caregiver. As the literature shows, the early stages of the disease represent an extremely delicate moment for families. This paper presents a study that investigated the life experiences of people with dementia and their caregivers in the early stages of the disease. Considering its field of investigation and its objective, this study was suitable for the application of participatory research methodology, by directly involving experts by experience. This article discusses the results of the qualitative research carried out by interviewing caregivers of people with dementia/cognitive deterioration. The study results enable us to understand and explore various aspects of this topic: the meaning of caring for a person with dementia; motivations of caregivers; attitudes and emotions concerning the disease; positive aspects related to caregiving; relationships between caregivers and patients, and, in general, how families deal with this situation. The results presented in this paper provide useful considerations and various suggestions for social workers and others involved in the caregiving process.


Dementia; participatory research; caregivers' experience; cognitive impairment