痴呆症患者及其照料者的管理与照料：意大利全国照料者及服务使用情况调查结果

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

作者信息

Paggetti Alice, Lorenzini Patrizia, Fabrizi Elisa, Di Nolfi Annachiara, Zambri Francesca, Giusti Angela, Palermo Vittorio, Palazzesi Ilaria, Passoni Serena, Camilli Flaminia, Bellomo Guido, Locuratolo Nicoletta, Sciancalepore Francesco, Ancidoni Antonio, Cipollari Susanna, Berardinelli Manuela, Bartorelli Luisa, Vanacore Nicola, Della Gatta Francesco

机构信息

National Center for Disease Prevention and Health Promotion, National Institute of Health, Rome, Italy.

Escuela de Doctorado, Universidad Católica de Valencia San Vicente Mártir, Valencia, Spain.

出版信息

Psychogeriatrics. 2025 Sep;25(5):e70081. doi: 10.1111/psyg.70081.

DOI:10.1111/psyg.70081

PMID:40841343

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12370575/

Abstract

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.

摘要

背景

预期寿命的增加将导致更多的人患有痴呆症（PLwD），从而使更多的照料者承受负担。照料者的负担受到PLwD和照料者自身的特征以及医疗服务组织的影响。意大利实施的新冠疫情和封锁措施使PLwD及其照料者的福祉恶化。认识到了解PLwD及其照料者的概况和护理需求的重要性，在意大利阿尔茨海默病和痴呆症基金范围内进行了一项全国性调查，以调查意大利PLwD照料者及其护理对象的社会人口特征。本研究旨在描述意大利PLwD照料者的特征、他们对服务的使用情况以及对服务的满意度。

方法

进行了一项全国性横断面调查。开发了一份主要由多项选择题组成的自填式问卷。

结果

共有2369名照料者参与了调查。他们中的大多数居住在意大利北部（60.1%），为女性（73.4%）且是护理对象的子女（74.1%）。诊断延迟的中位数为7至36个月。诊断主要由认知障碍和痴呆症中心的医生做出。照料者培训的报告情况不佳（34.1%）。在疫情期间，PLwD的临床状况恶化。对照料痴呆症专用服务的平均满意度为“可接受”。负面/非常负面的满意度与不住在北部、照料者年龄增加、未接受培训、疾病严重程度、从私人医生处收到诊断怀疑以及未使用日托中心或认知障碍和痴呆症中心有关。