Barcelona Alzheimer Treatment & Research Center

“He is 48 years old and has Alzheimer’s Disease. Now what? “- Support Groups

Dementia affects 9.4% of the population from 70 years. Alzheimer’s disease is the most diagnosed dementia: from 50-80% of people diagnosed with dementia have Alzheimer’s dementia (Department of Health and Social Security, 2010).

Approximately 8-10% of the population diagnosed with Alzheimer’s disease presents what is known as dementia and Alzheimer type presenile refers to people under 65 and therefore working age.

The experience of Fundació ACE when relatives went to people in this situation already existing support groups shows that it was necessary to make a different group.

Earlier, relatives of patients did not fit presenile support groups because they were a very different reality. Not only participants in the age of patients and their families; but also by the characteristics of the disease itself. Presenile dementia tends to be more severe and more rapid development of the dementia. The result was the abandonment of the group in most cases although they continued asking help take charge of their sick relative.

To improve the situation of these caregivers ACE Foundation was created in 2010 the project “He is 48 years old and has Alzheimer’s disease. Now what?”, Coordinated by Dr. Pilar Cañabate, head of the social foundation. This project is to create a support group for spouses of people with dementia presenile.

Since then (2010-2014) involved 104 people in 10 groups that have two aspects: the therapeutic and educational.

The therapeutic aims to help develop emotional resources to cope with the illness of the couple. The education aims to train participants so that they can take into account and meet the needs that are objective and subjective in the care of a person with dementia.

There is a gulf between the sentimental people diagnosed with Alzheimer’s and other dementias before 65 and then,” says Dr. Cañabate. “And not only for the caretaker: patient rights, aid to have access, family situation, etc. Sometimes they even have school age children, a mortgage…

Groups of previous years

Of the 104 people who participated from 2010 to 2014, the average age of participants is 59’5 years, from 35 to 71. 58% are men and 42% women. 79% of patients care alone and in the case of women, 31% of them also had dependent children.

40% of participants are active at work and another 19.4% have stopped working in order to act as carers. 54.4% of participants feel lonely. 62% of participants do not have anyone to support them.

53% of participants have expressed no entertainment but if you prefer to have to share with children or even grandchildren to give them more work. “I like it when my children come home at the weekends… It gives me extrawork but I want us together while their father is still able of recognizing them.

Groups of previous years

Group dynamics distinguishes three distinct stages regarding the topics covered. The first stage focuses on the age of the patient, the type of dementia and the changes that have taken place in him / her. “He was an architect… Now he can’t even open a Coke tan.” At this stage arises the “why him?“, the medical route to reach the final diagnosis, the impact of this, etc. “The diagnosis actually got me to relax, I began to understand certain things… I was about to sue him for psychological abuse.

The second step is to treat the patient care, the problems of everyday life or about administrative resources (services, etc.) “Use tobacco to make him do things. My husband knows that there’s no cigarette if he doesn’t shower.” “He has the right to get his Disability Pension increased.

The third stage focuses primarily on your needs as caregivers and the impact of the diagnosis of your partner in your life. “I am 51 years old and since he got sick I have no life. There’s not a second he seems the one I married and I can’t carry on with my life.” “I would like a free afternoon, sometimes, but what can I do with him?” “I don’t want to get my children involved, they’ve had enough. This is my problem.”

The project today

On 5 May 2016 the first group begins and registration are free, thanks to a grant from the Department of Social Welfare and Family of the Generalitat. Participants will meet fortnightly with a psychologist who chaired the meeting with a social worker who collects another perspective on sessions face study.

To register just have to contact the Unit Diagnostic ACE Foundation (telephone 93 430 47 20) or Dr. Pilar Cañabate (pcanyabate@fundacioace.com). The sessions will be Thursday from 16:00 to 17:30 at the headquarters of ACE in Barcelona.

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