Dementia care from the perspective of family members, caregivers, and public health and social care professionals: a qualitative study of the Italian fund for Alzheimer’s and other dementias

Background: Longer life expectancy has increased the prevalence of dementia, a major cause of disability in old age, requiring an interdisciplinary approach involving health and social care professionals (HScPs) and family members/caregivers (FmCs). This study aims to describe the current state of dementia care in Italy, identifying strengths, weaknesses, and experiences from FmCs and HScPs. Study design: Descriptive qualitative study. Methods: Forty-two focus groups have been conducted with 329 participants (187 HScPs and 142 FmCs). Results: The management of dementia is hampered by a marked unevenness in territorial services, with often insufficient services and staff. FmCs complain of difficulties in obtaining information and face a burden of care, exacerbated by the fragmentation of services and the COVID-19 pandemic. Despite these critical issues, the support of dementia-specific services (e.g., Centres for Cognitive Disorders and Dementias, Day Care Centres) and associations emerged as crucial. To enhance care, participants emphasized the need for more uniform and integrated services, well-trained professionals, public awareness campaigns to reduce stigma, and increased support for people living with dementia (PLWD) and their families. Conclusion: A holistic and coordinated approach that reduces territorial inequalities and empower effective resources is essential to ensure equitable care and improve the quality of life of PLWD and their families.