Dementia is a challenging chronic illness that affects the patients and their families. Families often perform a full-time, specialised role, which requires expert knowledge and skills. This paper describes the evaluation of proFamilies-dementia (a programme developed to support families that care for a relative with dementia) using an innovative participatory methodology: photovoice, a qualitative method of research that uses photography and voice to access people's experiences. The programme was evaluated in order to identify the positive and negative impacts of the intervention on individuals and families; the advantages and disadvantages of photovoice as a participatory tool were also captured. The sample consisted of six people from five families. Participants identified only positive impacts of the programme, including better emotional management, normalisation of feelings and increased focus on self-care. Photovoice facilitated access to the process of change initiated by proFamilies-dementia, described by a process of going beyond illness, negativity and loneliness.
In this paper we describe the development and pilot implementation, in a primary care context, of a programme for helping families adapt to living with a person with dementia (proFamilies-dementia). This programme aims to promote the healthy adaptation of the family to the presence of an elderly member with dementia living in their homes. It comprises three components: a psycho-educational, multi-family discussion group for the families; cognitive stimulation for the elderly person with dementia; and a mediation service to support the families after participation in the first two components. proFamilies-dementia was implemented with one group involving five families. The main benefits mentioned by families include: an opportunity to share experiences with others who are living through similar circumstances; the development of an improved sense of competency; and the improvement of family relationships. proFamilies-dementia reveals potential for promoting the provision of integrated support from health and social services, which usually function as independent and parallel support structures.
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