Palliative care for dementia: time to support caregivers from the start

The fragility of the people I care for as a palliative care physician extends, especially in the more advanced stages of illness, to family members and caregivers. In spite of law 38 of 2010, palliative care is still little known, activated late, especially for cancer patients.

What about patients with chronic degenerative diseases? To whom do they turn? Patients with dementia, for example, often come to our services when they are at a very advanced stage of the disease. This means, for the caregiver, that they have already spent many years of effort and loneliness: a long obstacle course that turns the time of care into a burden that rests entirely on their shoulders.

Recently, Ipsos conducted a national survey on palliative care and dementia on behalf of Vidas, interviewing a representative sample of doctors and nurses (hospitals and residential facilities for the elderly) and caregivers of patients with dementia. 86% of doctors and 85% of nurses are familiar with palliative care and rightly consider it a citizen's right and a valuable care tool, while most family members/caregivers are unaware of the possibility of activating it for their relatives.

56% of physicians and 68% of nurses believe that palliative care should be activated especially in the terminal stages of illness, but - an interesting fact and a sign of a cultural change that we need - 36% of physicians, especially neurologists, affirm that palliative care should be introduced as early as diagnosis. Palliative care, in fact, is an approach that improves the quality of life and relieves families of a burden that, if faced alone, becomes devastating with repercussions on physical and mental health.

"Thanks to you, I started 'enjoying' my time with mum again after more than 10 years! And I was also able to feel cared for in my caring for mum. In short, since you have arrived, I am no longer alone!". The research also reveals this: family members feel alone and unprepared. They would like answers, support, guidance in coping with the evolution of the disease and planning for the future. They would like to be able to choose for themselves and help their loved ones to choose. And among the choices, the desire emerges clearly (73% of cases) to care for their loved one at home and to be cared for at home themselves at the end of life.