Management and Care for People Living With Dementia and Their Caregivers: Findings From an Italian National Survey on Caregivers and Services Use

Background: Increasing life expectancy will lead to more people living with dementia (PLwD) and, consequently, more caregivers experiencing burden. Caregivers burden is influenced by characteristics of both PLwD and caregivers themselves, as well as healthcare services organisation. The COVID-19 pandemic and lockdown measures implemented in Italy worsened PLwD and their caregivers' well-being. Recognising the importance of understanding the profiles and care needs of PLwD and their caregivers, a national survey was conducted within the Italian Fund for Alzheimer's and Dementias to investigate the sociodemographic characteristics of PLwD caregivers and their care recipients in Italy. This study aimed to describe the characteristics of Italian caregivers of PLwD, their use of services, and satisfaction with the latter. Methods: A cross-sectional national survey was conducted. A self-administered questionnaire was developed consisting mainly of multiple-choice questions. Results: A total of 2369 caregivers participated in the survey. Most of them resided in Northern Italy (60.1%), were females (73.4%) and care recipients' children (74.1%). Median diagnostic delay ranged from 7 to 36 months. Diagnosis was formulated mainly by a physician from a Centre for Cognitive Disorders and Dementia. Caregiver training was poorly reported (34.1%). PLwD clinical condition worsened during the pandemic. The mean degree of satisfaction with services dedicated to dementia was "acceptable". Negative/very negative degree of satisfaction was associated with not living in the North, increased caregiver's age, not having received training, severe degree of disease, having received the diagnosis suspicion from a private doctor, and not having used day care centres or Centres for Cognitive Disorders and Dementia. Conclusions: Differences in the sociodemographic profile of caregivers and disparity in services across Italy emerged. The establishment of a comprehensive, accessible, and well-integrated network of services across all stages of the disease progression is needed.