Dementia Map and Pathway

The huge world of suffering and of health and social engagement that revolves around dementias relies, for the first time in Italy, on a Map for Dementias, a website that connects, links and shares useful information, both for healthcare professionals and social workers, as well as for the general public, people living with dementia and their caregivers. The new map is intended to promote shared interest between all the various actors involved and guide people living with dementia and families through the complicated dementia pathway to best treat and support those who live with this condition.

The Map was presented on May 22nd, in a crowded conference hall of Mestre Hospital (Venice - Italy), in the presence, among others, of:

· Veneto Region Councilor for Health and Social Services, Social Health planning, program implementation, Dr. Manuela Lanzarin

· Azienda Zero General Manager, Dr. Patrizia Simionato

· AULSS 3 Serenissima General Manager, Dr. Giuseppe Dal Ben

· National Health Institute member, Dr. Nicola Vanacore

· President of the European Working Group for Dementia, Dr. Helen Rochford-Brennan

· Map Project Coordinator and Scientific Reference, Dr. Cristina Basso (Regional Epidemiological Service - Azienda Zero)

· different professionals involved in the care and assistance of people living with dementia (GP, neurologist, geriatrician, nurse, social worker, psychologist, educator)

In 2017, the Regional official health records registered 66.147 people diagnosed with dementia, 63.458 of whom aged 65+ years old and 2,689 under the age of 65. In Italy, this number rises to one million 241 thousands of individuals living with dementia, 50-60% of them have Alzheimer's disease.

The dementia Veneto post-diagnostic network brings together all the professionals involved in the care and assistance of people with dementia and their families - starting from community general practitioners to hospital and local health and social care specialists. In Veneto people with dementia have access to 141 Early Stage Day Care Centers operating in 272 Municipalities, 125 later stages Day Care Centers that accommodate a total of 1769 people, 31 diagnostic Centers for Cognitive Disorders and Dementia - CDCD operated by 109 healthcare professionals.

The new Veneto PDTA (Diagnostic Therapeutic Assistance Pathway for dementia) is based on an integrated, continuous and multidisciplinary approach, centered on person’s needs and abilities. The new pathway recognizes people with dementia rights and access to integrated interventions: from the right to social inclusion, to the right to independent living, rehabilitation, employment and home assistance. In other words, the document acknowledges and implements the recommendations introduced by the Global Action Plan approved by the World Health Organization in 2017. For the first time, these recommendations are integrated into an Italian institutional document that aligns with the most advanced international dementia Plans.

As Dr. Cristina Basso commented during her presentation at the Mestre (Venice) conference, “the new web map launched in May was specifically created to support the Veneto Diagnostic Therapeutic Assistance Pathway for dementia. It is a living reference library, designed with the dual aim to raise awareness among social and health care professionals and, at the same time, to enable people living with dementia and families to obtain clear and defined information about dementia in general as well as details on how to access the services available in their own community. The website also provides a wide range of specialized information for general practitioners, nurses, medical specialists working in Cognitive Disorders and Dementias Centers (Memory Clinics), hospital specialists, psychologists and social workers. The Map also maximizes the skills of each discipline to ensure that all health and social care professionals can work at the top level of their license. More specifically, the map emphasizes the interdisciplinary roles of nurses and social workers in the delicate process of gathering the most comprehensive psycho-social assessment of each person with dementia. Such interdisciplinary assessment enables the whole post-diagnostic team of providers to design a truly personalized plan that ensures the maximum level of care and enablement”.

“Today we celebrate a true turning point in the culture of dementias, a big world where our belief of integration between health and social issues is applied – said Veneto Region Councilor for Health and Social Services, Manuela Lanzarin in her opening speech at the Mestre conference. The new resources we are presenting today enable us to face the challenges posed by dementia with a stronger and wider network of resources. The new network tackles the entire care and therapeutic pathway, from the recognition of the first signs of cognitive decline to the official diagnosis to clinical, social and palliative care services. Integration brings together health professionals, social workers, people living with dementia and families, and in the Map they all find a place where to dialogue, to find and share the necessary information". "The number of people living with dementia is rapidly growing - the local minister added. We must and we want to tackle this disease with social inclusion, resource sharing and networking: we strongly believe that the Map is an innovative example of this".

During the conference, Dr. Nicola Vanacore of the National Health Institute recognized the value of the new Veneto approach to dementia care and observed that Veneto is the first Region to realize a website to support the PDTA and provides guidance to families and professionals with a dedicated session to community welfare and social inclusion. He added that this work is in line with the provisions of the second goal of the National Dementia Plan and complies with the document approved in the Unified Conference called "National guidelines on PDTA in dementias". Dr. Vanacore also added, “The challenge is now represented by the implementation of this extraordinary work. The aim is to improve the welfare of people with dementia and their families, making this new public social-health system sustainable while pursuing high standards of diagnostic and prescriptive appropriateness”.

Dr. Rochford-Brennan explained the great disorientation that usually follows a diagnosis of dementia. This is the most dramatic moment for any person who is diagnosed with this condition and as such requires the maximum level of support. She also underlined the importance of respecting the basic human rights of people with cognitive decline. She placed greater emphasis on ensuring diagnosis disclosure to people with dementia, on dignity, on self-determination, on the right to live at home as long as one can and to live the way one chooses. “What people living with dementia, their families and caregivers ask for is a rights’ based approach,” she said, adding also that she was enthusiastic about the inclusive approach given by the Veneto Region to dementias. “This is the right approach - it should be made a universal approach adopted anywhere. Instead, we still see, in some cases, a sort of ghettoization of the sick: once you get in you cannot get out anymore, as you lose your home, social relations and contact with reality. We need help, as you are doing in Veneto, not barricades”. Dr. Rochford-Brennan’s intervention has been particularly touching and praised.

Helen's intervention has put all the attendees in a position to reflect how hard it is to deal with the disease with awareness and how the professionals are not trained and fully aware of the perspective of people with dementia.