Finanziamento UE – NextGenerationEU PRIN 2022 "Family Caregivers and Alzheimer: Promoting Engagement and Community Care in the Post-Pandemic Society"PNRR M4C2 investimento 1.1 Avviso 104/2022
Progetto The energy dedicated to fighting Covid-19, while necessary, has drastically reduced ordinary clinical activities of prevention,
diagnosis, assistance, and treatment of individuals with other pathologies, creating serious repercussions for chronic patients.
The crisis has proven particularly difficult for people with Alzheimer’s and their family caregivers. The latter are of fundamental
importance in the case of Alzheimer’s, as patients depend upon family members throughout the day and night.
Our objective is to develop a set of “Guidelines for the engagement of family caregivers taking care of Alzheimer's patients in an
ecosystemic perspective”.
The Guidelines aim to improve the quality of life of caregivers and, indirectly, those they care for. They will be organised in three
levels: macro (recommendations to policymakers), intermediate (recommendations to the Third sector and local health care
organisations), and micro (proposals to improve the relationship between socio-medical professionals and caregivers).
Engagement can be viewed as the ‘active involvement’ of the patient in the process of treating and managing illness. In the case of
Alzheimer’s, the key driver of such engagement is the family caregiver. Adopting an ecosystemic approach to engagement means
fostering the active engagement of all actors involved in the treatment process, so as to improve the quality of life of people with
dementia and their caregivers.
Moreover, the aim of the research is to integrate the psychological perspective implied by the classic engagement approach with a
Ministero dell'Università e della Ricerca
MUR - BANDO 2022
sociological perspective focusing on the social inequalities and social determinants approach to health — that is, to link engagement
and social justice.
Our proposal is based on the following research-question:
In a post-pandemic society, what are the priorities and needs of family caregivers of Alzheimer's patients, and what are the
intervention strategies of public and private social agents that can directly or indirectly improve their quality of life?
The research-question is made up of 3 analytical research-objectives:
1. How has the coronavirus pandemic impacted the families of people with Alzheimer’s?
2. What strategies have institutions and voluntary organisations enacted to support the families of people with Alzheimer’s?
3. How can innovative practice of care and family support be incorporated in the ecosystem of care in a post-pandemic society?
To reach these 3 research sub-objectives, a desk analysis and an heterogenous set of qualitative research methods will be
employed: narrative inquiry, focus group and semi-structured interviews. The Guidelines will be developed under the principles of
the Appreciative Inquiry. This means that the Guidelines will be co-constructed through an intense and transparent participation of
the main stakeholders under the coordination of the University team.