Alzheimer’s: appropriate care for 1 in 4 patients. Veneto and Tuscany ‘ready’ for new treatments

Ensuring fair and sustainable access to new treatment options for Alzheimer’s across all Italian regions remains a distant goal. Given that there are 700,000 people living with the disease and over 3 million family members and carers affected, in order to address what appears to be a genuine social emergency – one that is, moreover, set to grow as the population ages – stable and long-term funding, integration between health and social care services, widespread access to technology and ongoing support are required. Yet, even today, access to services, diagnosis and treatment remains a veritable obstacle course, despite the new National Dementia Plan 2027–2031 presented by the Ministry of Health on 21 September, World Alzheimer’s Day, and despite the funding allocated to the regions – totalling 33.4 million euros for the three-year period 2024–2026 – more than double the amount for the previous three-year period – and with new treatments for the early stages of the disease on the horizon, approved by the US FDA and the EMA in Europe but still under review by the Italian Medicines Agency (AIFA).

The most up-to-date overview, which highlights requirements that have been met on paper but not yet adequately implemented in practice, comes from the Altems Advisory paper ‘Alzheimer’s in Italia: regional systems put to the test by diagnostic and therapeutic innovation’: a comparative analysis of nine regions – Lombardy, Lazio, Veneto, Piedmont, Campania, Tuscany, Apulia, Sardinia and Sicily – focusing on governance, the organisation of care networks and the readiness of services to respond to new opportunities in diagnosis and treatment. The findings reveal that, more than ten years after the adoption of the National Dementia Plan, 75 per cent of people with the condition are not enrolled in a structured care pathway; that only 25 per cent of people with dementia residing in residential care homes (RSAs) have access to a dedicated Alzheimer’s programme; and that none of the regions considered had established structured pathways for the new anti-amyloid therapies at the start of the project. Furthermore, a significant gap between the north and south of the country is confirmed: in terms of access to cerebrospinal fluid markers at Centres for Cognitive Disorders and Dementia (CDCDs) – 76 per cent in the north and 49 per cent in the south – and in terms of Diagnostic, Therapeutic and Care Pathways (PDTAs), those PDTA pathways necessary for patient management, which are present in almost three out of every seven centres (69 per cent) in the North and in just 27 per cent of the Cdcd centres in the South and on the islands.

The findings of the Altems survey – which were presented to the Chamber of Deputies at an event organised by the Honourable Annarita Patriarca (Parliamentary Intergroup for Neuroscience and Alzheimer’s) and carried out with the unconditional support of Lilly Italia, Roche and Roche Diagnostics. Highly heterogeneous regional models lacking structured working groups; PDTA guidelines which, as mentioned, are often out of date with regard to new treatments; advanced diagnostic technologies that exist but are not always truly accessible; information systems that remain fragmented; inconsistent roles for GPs and multidisciplinary care pathways: these are the key issues in a system that still lacks a cohesive network and which results in profound inequalities.

“The analysis reveals a convergence that is more formal than operational: plans, policies and projects exist almost everywhere, but their translation into stable networks, shared data and standardised diagnostic pathways remains patchy,” says Eugenio Di Brino, co-founder and partner at Altems Advisory. We have observed a clear causal chain: where operational governance is lacking, PDTAs become outdated, information systems become fragmented and early diagnosis ends up depending on the discretion of individual professionals. This is why preparedness for future innovation is not measured by the availability of a single technology, but by the ability to integrate governance, care pathways, information infrastructure and continuity of care, whilst enhancing the role of general practice. It is on this integration that the possibility of offering people with Alzheimer’s the same opportunities for diagnosis and care in every region hinges.”

Access to advanced diagnostic tests also reflects this disparity. According to data from the Italian National Institute of Health cited by Altems, only two out of three regional health authorities nationwide have access to amyloid PET scans; in the regions analysed, the proportion ranges from around 48 per cent to 92 per cent. This finding, in light of new therapeutic opportunities that require a precise clinical assessment of the patient to evaluate potential risks and the feasibility of administering these new therapies, makes it all the more urgent to strengthen the diagnostic capacity of healthcare services, whilst also promoting the integration of biomarkers into clinical pathways, in accordance with agreed criteria of appropriateness and in coordination with specialist assessments. The challenge concerns not only the availability of technologies – the experts explain – but the system’s ability to ensure their appropriate and equitable use across the country.