The survey was also expanded to include a sample of 1,400 women—comprising 1,000 adults over 18 and 400 caregivers—to gauge the experiences of those who provide daily, at-home care for loved ones battling neurodegenerative conditions, especially dementia. This broader approach helps shed light on the realities faced by caregivers and family members in managing such complex diseases.
Underutilized Resource
The findings highlight that, despite limited access, palliative care (PC) is crucial for enhancing quality of life across the disease trajectory (61%) for dementia patients and is also vital in pain management (reported by 48% of nurses). Yet, even with this positive outlook, only just over half of the physicians have activated palliative services for dementia patients in the past year, often citing logistical barriers. About 25% of doctors report being unable to access these services within their regional or local health authority (AUSL), despite most healthcare providers being well-informed about the laws governing palliative care, with over 80% knowing about relevant regulations.
There are some disagreements among healthcare workers regarding when to initiate palliative care: only 56% of doctors and 68% of nurses believe it should begin in advanced or terminal stages, while approximately one-third of physicians consider it appropriate from the point of diagnosis. Effective implementation relies heavily on proper information dissemination, training, and teamwork. Data shows that 70% of healthcare professionals discuss palliative options for dementia within their community, 60% consult specialist support available in their facility, and about a third seek outside expertise to assist in decision-making.
Interestingly, perhaps contrary to expectations, only half of the doctors have actually activated palliative services in this setting, due to various reasons, including a lack of awareness about regional or local health authority programs and a general reluctance to engage—each issue cited by about 26% of respondents.
Limited Awareness Among Families and Caregivers
Professionals confirm a widespread lack of awareness among those caring for dementia patients about the array of available options: according to physicians, 70% of caregivers and family members are aware of palliative care services, increasing to 80% among nurses. Despite this, half of all caregivers express a desire for more information about available opportunities and services, often seeking guidance from their primary care physicians, who remain the main point of contact for information dissemination. Awareness campaigns via TV, local health authorities, and open house events could further improve understanding and access.
Several barriers impede the broader adoption of palliative care in dementia: cultural barriers (47%), lack of knowledge about the goals of palliative care in dementia (24%), difficulties explaining its benefits (also 24%), fear or demoralization associated with discussing disease progression or end-of-life issues (21%), and concerns about causing distress or fear in patients (20%).
Towards a Shared Approach
Dementia’s long and progressive course necessitates careful care planning—a collaborative process involving the patient, family members, and healthcare teams to establish care goals aligned with the individual’s wishes, values, and quality of life. This approach ideally includes a Shared Care Planning (SCP).
However, despite the high interest (73% of nurses and 66% of physicians), this willingness does not always translate into action. Only 21% of patients receive an actual SCP proposal, revealing a gap in early, structured conversations. Challenges include the difficulty in engaging patients due to significant cognitive impairment and the often late initiation of these discussions. Overall, only 55% of physicians have proposed SCP to an average of 12 patients, with about 7 of those receiving active planning. Furthermore, only 19% of patients have documented advance directives (Disposizioni Anticipate di Trattamento, DAT) before their illness worsens—though 80% of caregivers believe that such directives could greatly improve care and quality of life for individuals with dementia.
The Research Background
This study stems from the rapid increase in neurodegenerative diseases within an aging population and reflects the evolving landscape of palliative care, which is currently more integrated into oncology than for neurological conditions. These changes create new challenges and demands for healthcare systems.
“Between 2019 and 2024, the proportion of patients with non-cancer illnesses—including dementia—has grown significantly, from 11% to 26%,” explains VIDAS General Director Antonio Benedetti. “Today, one in four patients lives with a chronic illness. This evolution requires us to rethink how we deliver care: we need palliative services capable of managing long and complex disease trajectories, responding with expertise and compassion to the needs of both patients and caregivers.”
