Press Release No. 64/2022 Dementia: National Survey on the Socio-Economic Conditions of Patients' Families. The ISS is the Leader of Seven Projects Financed by the Dementia Fund

ISS, 20 September 2022

The projects coordinated by the ISS were presented today at the Campidoglio, on the occasion of World Alzheimer's Day tomorrow 21 September

A national survey has been launched on the social and economic conditions of approximately 10,000 family members of patients with dementia: starting today, 20 September 2022, a dedicated questionnaire can be completed on the following link. The survey, promoted by the ISS Dementia Observatory in collaboration with Italy’s United Alzheimer's Association, was presented during the conference that was held at the Campidoglio (see attached programme) on the occasion of the imminent World Alzheimer's Day (21 September). This is one of the many initiatives in which the Institute is involved, in collaboration with the Regions and Autonomous Provinces (PA), scientific societies and patient associations, thanks to the Decree on the Fund for Alzheimer's Disorder and Dementia, published on 30 March in the Official Journal.

"Indeed, this is the first public fund for dementia in the history of our Country and represents, after the Cronos Project and the publication of the National Dementia Plan (NDP), the largest public health operation on this issue - said Nicola Vanacore, head of the Dementia Observatory. The Fund allocates 14 million and one hundred thousand euros to the Regions and Autonomous Provinces, and 900,000 euros to the ISS, for the execution of a series of project activities aimed at pursuing the objectives of the NDP itself".

It was not only the survey that was illustrated today at the Campidoglio, but also a number of other initiatives carried out by the Dementia Observatory: from the update and integration of the Guidance on Diagnosis and Treatment, to the national survey on the treatment facilities, from the evaluation of risk factors to quantify the number of avoidable cases to the training of health professionals and the promotion of computerized medical records.

 “This is an extraordinary opportunity: a specific fund for dementia that comes almost eight years after the publication of the NDP which, we would like to recall, did not envisage any financial support”, continued Vanacore. “A fund which, moreover for the first time, contemplates research on psycho-educational treatment, cognitive rehabilitation and support for caregivers, with the aim of defining appropriate interventions to be delivered through the healthcare system".

The projects of the Regions and of the Autonomous Provinces that come under one or more of the five project lines envisaged by the Decree (early diagnosis - i.e. before the onset of dementia, timely diagnosis - when dementia is already evident, telemedicine, tele-rehabilitation and psychoeducational treatment, cognitive stimulation and caregiver support) will be presented at another conference scheduled for 26 September at the Istituto Superiore di Sanità. A hotbed of ideas and projects to share and implement in order to improve the delivery of care for this disorder. 

Scheduled activities 

1. “Guidance on the Diagnosis and Treatment of Dementia”, a document which provides an update of the 2018 National Institute for Health and Care Excellence (NICE) Guidance containing 40 queries, 126 public health recommendations and 26 research recommendations. Another 14 queries were added to the latter: 11 on Mild Cognitive Impairment (MCI) and three on dementia. The Guidance document has been drawn up in accordance with the Methodological Manual of the National Guidelines System and will provide recommendations for clinical practice which pursue diagnostic and therapeutic appropriateness in providing care for patients with dementia across the Country.
2. A nationwide survey was carried out for each of the three healthcare hubs (Centres for Cognitive Disorders and Dementia - CDCD, Day Centres, Nursing Homes) involving a total of approximately 5,000 facilities. The information collected by the survey will be used to update the map of services listed on the Dementia Observatory website, to estimate the number of people with dementia who seek help from these facilities and their characteristics; to describe the complexities associated with the clinical approach and management of patients; and to explore the available resources and the barriers that make it difficult to deliver the services in the different Regions.
3. A nationwide survey was carried out in collaboration with the Italian Alzheimer Association on the social and economic conditions of family members of patients with dementia: as from today, 20 September, it is possible to access and complete the questionnaire using the following link. Specifically, the survey, which aims to reach out to 10,000 family members of patients with dementia stratified by the frequency of the disease in the various Regions, will gather information that will provide an updated picture of the:

• difficulties and delays in obtaining a diagnosis of dementia;

• costs incurred by families to provide care for a family member with dementia;

• critical issues concerning the assignment of supportive legal figures (such as guardians or supportive administrators);

• effects that the COVID-19 pandemic has had on the diagnosis, care and services for people with dementia and their families.

4. Make an estimate of the prevalence of 12 preventable risk factors for dementia (diabetes, hypertension, obesity, poor social relationships, physical inactivity, hearing problems, brain trauma, low education, air pollution, depression, excessive alcohol consumption, smoking) in all the Regions and Autonomous Provinces in collaboration with the PASSI Surveillance System and the PASSI d'Argento. With this estimate it will be possible to calculate the number of avoidable cases of Alzheimer's and vascular dementia in each Region and Autonomous Province and, for the first time, provide the Epidemiology Departments of the Regions with all the information required to gain an understanding of the real extent of the phenomenon and hence develop targeted public health actions to be introduced in the updates of the Regional Prevention Plans.
5. Definition of a training program for rehabilitation professionals and for family members and caregivers of patients which provides courses that can be attended both in presence and remotely (FAD course). These two courses complete the existing training offer of the Dementia Observatory which for years has held a course on the clinical epidemiology of dementia, a course on the drafting of a PDTA - Diagnostic and Therapy Process for dementia patients, and a course for general practitioners and, finally, starting this year, a specific course on dementia and migrants.
6. Dissemination and implementation of four documents produced in the last five years by the Dementia Task Force, namely: Guidelines for the definition of  a PDTA, a document on the use of Information Systems, documents on the creation of Dementia Friendly Communities and a document on the Clinical Governance of Dementia. The latter document, in particular, includes recommendations on the communication of the diagnosis and information about the legal figures for the protection of people with dementia and about useful tools for defining the skills and competences of people with dementia. Finally, the ISS will present a proposal to the Dementia Task Force to update the NDP.
7. Promotion of the adoption of a computerized medical record in the 587 CDCDs present across the Country. The flow of data produced by the computerized records from all the CDCDs together with the validation of current healthcare data flows (drug prescriptions, hospital admissions, exemptions, admissions to residential and semi-residential facilities, emergency rooms) will lead to the building of a national dementia information system as envisioned by the NDP and confirmed by the Alzheimer's and Dementia Fund.

The Figures

In Italy, the total number of patients with dementia is estimated to be over one million (of which approximately 600,000 with Alzheimer's dementia) and approximately three million people are directly or indirectly involved in providing care, with consequences also on an economic and organizational level. The phenomenon is increasing due to the aging of the population. According to the demographic projections reported by the Ministry of Health on its website, based on current trends, by 2051 there will be 280 elderly people for every 100 young people, with an increase in all age-related chronic diseases, including dementia.