Alzheimer's patients in nursing homes: why care is at risk if fees are not clarified

Caring for one's family member with Alzheimer's disease is very hard: the need for constant attention, the suffering of seeing a loved one lose their memory and then their identity, the awareness of a decline that can be slowed but not reversed. They really do not deserve to carry the burden of additional, and moreover avoidable, worry. And yet, this is precisely what happens, and which leads us to say, provocatively but also with bitter realism, that on this World Alzheimer's Day on 21 September in Italy there is little to celebrate. On the contrary: families have one more reason to worry. Due not to the disease, but to politics.

The future of residential care services for people suffering from dementia and Alzheimer's is at risk if the government, parliament, and the regions do not act promptly. It is necessary for them to pass regulations that clearly and unequivocally establish the fee for residential care of a non-self-sufficient elderly person with Alzheimer's disease, or who falls ill with Alzheimer's during their stay. At present, this clarity in the rules does not exist. So much so that the issue has often ended up before judges, who have often given rulings that overturn the traditional reading. In fact, if previously the National Health System (i.e. the community) was responsible for the health quota, and the patient (unless indigent) for the social quota, recent judgments have adopted an interpretation whereby the entire cost of the hospitalisation of an Alzheimer's patient is borne by the National Health System.

And the ones who pay the consequences of these judgments are not those who wrote the rules, but those who can do nothing more than apply them: the organisations caring for the elderly with Alzheimer's, mostly non-profit organisations. They face legal costs, compensation claims and uncertainty about payments: a combination that puts them in great difficulty. So much so that they are contemplating closing Alzheimer's units or not developing dementia services. Because without a precise regulation, it is not clear who should pay for the work that the OSS, nurses, educators, physiotherapists perform every day in the RSAs: the National Health System? The patient? Who should pay, it is not for us to say.

But without a clear rule, the only ones who will undoubtedly be paid will be some lawyers. Without a clear rule, and without the certainty of receiving the necessary resources, the structures, particularly the non-profit ones, cannot go on.

The concern of the institutions is complementary to that of the families. Because in the RSAs or Alzheimer's units the most frail elderly are taken in. Those who, because of the seriousness of their illness, can no longer live at home. And they need continuous and professional care, which is incompatible with the commitment, however generous, of caregivers. Not to mention that the number of dementia patients by 2050 - it is estimated - will rise to more than 2 million, twice as many as now, while the demographic decline will shrink the pool of potential caregivers. We will have tens of thousands of lonely elderly people with Alzheimer's disease. Professional residential care services will be even more necessary than now.