Franzen in How to be alone he wrote that “Alzheimer’s is particularly sad because the patient loses his self long before the body dies.” On the world day to raise awareness of this particular chronic disease of the mind, it is more necessary than ever to put the people involved in the pathogenic event at the center: the patient and those who take care of them every day.
Since taking charge at a certain stage of the disease does not only concern the more purely healthcare aspect, but also social-welfare, it can be understood that the expense items take on rather cumbersome forms for families involved in the management of a loved one suffering from Alzheimer’s and severe forms of senile dementia.
How much does a family spend between before and after hospitalization
There is no need for the sick person to reach the final stage of the disease for there to be costs associated with management. Even in the initial stages, when the patient progressively loses autonomy, there is a need for the constant presence of someone to monitor the progress. Be it a caregiver belonging to the family unit, with the understandable repercussions on his income, or a specialized operator. In this phase, between the hiring of healthcare personnel and any medical aids, the direct cost for families is between 1,200 and 2,500 euros per month.
When management becomes unsustainable, hospitalization in an RSA is a practically obligatory choice. The line is divided into two parts:
- the healthcare quota, which concerns the strictly medical part, and is covered by the NHS;
- the hotel quota, which concerns personal assistance through operations such as mouth feeding, personal hygiene, injury prevention and washing.
Regardless of the price ranges, the average costs for this last expense item are around 2,242 euros per month, which in private structures can very easily reach 4,000 euros.
In the end, for an average hospitalization period of around 33 months, families find themselves spending around 74,000 euros just for the hotel fee.
When can you request a refund from the NHS for the hotel fee?
The point is that what we have so far called hotel quota at a certain stage of the disease is not a simple logistical service. We are talking about patients who progressively lose control of their bodies and are no longer able to feed themselves independently.
According to the consolidated orientation of the Court of Cassation and the courts of appeal, in the advanced stages of the pathology it is impossible to separate healthcare and social-welfare services, which to all intents and purposes fall within the part of integrated medical therapy.
When this inseparability exists, which must be proven by the Personalized Therapeutic Plan and the reports of the Geriatric Evaluation Unit, the hotel fee must also fall on the National Health Service. Family members who have paid the hotel fee can take legal action to obtain the cancellation of future fees and possibly the refund of sums unduly paid in previous years, within the limits of the statute of limitations.
The regulatory void between sentences and maintenance of public accounts
Since it is a chronic neurodegenerative disease whose effects spread over a period of time that can have very marked differences between one patient and another, it is not always easy to define on an application level where we can speak of simple non-self-sufficiency and where we should talk about “pathology with high health integration”. Where in the first case the families must contribute by paying the hotel costs of the structure, while in the second case they would be exempt.
To avoid the financial collapse of RSAs and protect regional healthcare budgets, the Regions and managers tend to ordinarily apply the scheme of non-self-sufficiencyrequesting the hotel fee even when it should not have been due.
The result is that families are forced to face long legal cases to assert their right, while the public health system exposes itself to the risk of having to repay tens of millions of euros in arrears, in the absence of a national reform that allocates structural resources dedicated to the very serious non-self-sufficiency.
The court case
The impact of this short circuit is reflected in recent news cases. After three degrees of judgement, the Court of Cassation confirmed that the Venetian family was entitled to reimbursement for the fee paid unduly for their relative suffering from Alzheimer’s. The local health company had to return a sum exceeding 129,000 euros. Sentences like these demonstrate the legal validity of reimbursement requests, but above all the size of the figures at stake when the economic burden of healthcare is mistakenly offloaded onto family budgets.
