implement the Pla de Demències of Cataloniamore targeted therapy research more aid to families and family associations and to create a official patient census are some of the main demands of the Federation of associations of families of people with Alzheimer’s disease in Catalonia (Fafac).
On the occasion of World Alzheimer’s Day, celebrated on September 21, Fafac denounces “inefficiency and oblivion” suffered by the families of the patients by the Administration. “It’s a very expensive disease costs about 31,000 euros per year”, explains to this newspaper the president of Fafac, Joseph Gasulla. The federation asks the Generalitat to implement the “Pla d’atenció sanitària a les persones amb deteriorament cognitiu lleu i demència de Catalunya” (Plademcat), since it is approved but does not have the necessary funds, according to Gasulla, he therefore runs the risk of being “on wet paper”.
One of the key points of the plan is “provide support to the patient’s environment”, i.e. “taking care of the caregiver” (which is usually a family member), a function that “the administrations must carry out, but which for 30 years have been carried out by the various associations of relatives of people with Alzheimer’s”. “A person leaves his job to take care of sick people 90% of caregivers are women,” emphasizes Gasulla, thus emphasizing the gender gap.
minimal and slow assists
The associations also denounce that the processes for evaluating a patient, by which access to the help of the agency, are late “at least a year” to arrive. “And sometimes the help is minimal,” says the president of Fafac. The associations also take a long time to receive the subsidies, which generates “tensions in the treasury”. “It is not possible that they reach us in December or August, as has happened this year,” he denounces. “Here we are not asking for more money, but that the Administration be better organized”.
Besides, the covid-19 pandemic He reduced the accounts of the entities because they could not organize a large part of the public events with which they collect exceptional help, such as concerts, theater performances or parties.
Relatives also request that a official census of Alzheimer’s patients because today there is only approximations. According to the Spanish Society of Neurology (SEN), in Spain there are some 800,000 patients, including 90,000 in Catalonia. “We are doing a census in collaboration with the Ministry of Health and the Spanish Confederation of Alzheimer’s Disease (Ceafa). It is important to create it to remedy this”, stresses Gasulla.
Family associations are also calling for the investigations to be speeded up. They think “we’re not doing enough”. “We wear about 25 or 30 years during which no significant progress has been made. There is no new drug”, denounces the president of Fafac.
Admittedly, advances in early detection are now attracting the youngest to associations without dementia yet developed, who want to do cognitive exercises to delay the onset of symptoms and who are interested in everything related to preparing for most acute phase of the disease.