Ildefonso Fernández, a 58-year-old from La Rioja, has recently helped others to understand what life is like for someone who is affected by Alzheimer's. “I haven't changed because they said I have Alzheimer's; I'm still me and that's how I want to be treated,” he said.
Ildefonso is in the initial stage of this neurodegenerative condition, which was diagnosed when he was 57, and he was giving his point of view at the VII National Alzheimer's Conference which took place at the Palacio de Ferias y Congresos in Malaga recently and was organised by the Spanish Alzheimer's Confederation (CEAFA).
After being introduced by the president of CEAFA, Cheles Cantabrana, he explained that he wanted to share some of his thoughts, reflections and conclusions with those present.
Ildefonso, who is on the Panel of Experts of People with Alzheimer's (PEPA), stressed that doctors need to communicate directly with patients who have this illness.
“My neurologist put himself in my place and was very empathetic when he talked to me. It is very difficult when you're told that you have Alzheimer's and the outlook isn't good,” he said.
He explained that about ten per cent of Alzheimer's patients are under the age of 65, which is very young to be affected by a condition of this type.
“You have to learn to live with this illness. Behind every diagnosis is a person who has rights. They deserve to be told directly by their doctor what they are suffering from. It shouldn't just be their families who are informed. The specialist needs to explain the diagnosis to them in person and talk to them, like my neurologist did with me,” he said.
Ildefonso Fernández thanked the association of relatives of Alzheimer's in La Rioja for the help it had given him, saying it had given him back the will to live and to collaborate with other patients. He also urged people to go to their doctor as soon as they noticed any symptoms, because detecting the illness early helps to deal with the later stages.
“The earlier we know we have Alzheimer's, the more time there is to do what we have to do,” he stressed.
He also criticised the lack of investment in Spain on research for new drugs to combat Alzheimer's, and said there should be greater information and communication between researchers.
“I want to take part in clinical trials, but I need to know where they are taking place and what their aim is. It would be fantastic if our generation could be the last to suffer from Alzheimer's, but we are still a long way from finding a cure. I hope research will win that battle, but in the meantime we need to improve the quality of life for patients,” he said.
When Ildefonso was diagnosed with Alzheimer's, he was the head of sales and under-manager of a national supermarket chain. He told the conference that patients should always be allowed to continue working if they so wished and they were able to do so. They should not be forced to give up their jobs and become obligatory pensioners.
“Why wouldn't I be able to work? Have I changed so much from one day to the next, just because I was told I have Alzheimer's?” he asked. He wants companies to be more sensitive and supportive, and to adapt people'sduties so they can carry on working. “I was happy in my job. I would have liked to have continued,” he said.
With regard to patients' families, he said they are the pillar which supports the patients and they need more support themselves. He called for the National Alzheimer's Plan to be put into effect as a matter of urgency.