Spain is one of the countries in the world with the highest proportion of Alzheimer’s patients among people over 60 years of age, with a total of 800,000 cases. These are data from the Spanish Society of Neurology on the occasion of World Alzheimer’s Day that is commemorated on September 21. But who cares for the caregivers of people with Alzheimer’s disease? How do these care tasks impact your physical and mental health? We interview Sandra Poudevida, a psychologist in the social area of the Pasqual Maragall Foundation.
What are the therapeutic groups for caregivers of the Pasqual Maragall Foundation and why do they arise?
The Pasqual Maragall Foundation was born with the aim of researching and eradicating or preventing Alzheimer’s disease. This goal is long-term but we were concerned about the short term: what do we do in the meantime with the people who are now suffering from the disease? From this reflection, in 2011, therapeutic groups for caregivers of Alzheimer’s patients emerged. These families receive a diagnosis that changes their lives and they do not know how to deal with it because it is a disease with many repercussions not only at the health level but also at the social, economic, family or occupational level. If the person who has to care cannot handle all this, it will be difficult to take care of a sick person.
That is why we wrote and structured an intervention protocol that supports caregivers and that we have scientifically validated. The results have been surprising because we have been able to see to what extent the quality of life and the mood of caregivers are improved. Now we have groups operating in Barcelona, Girona, Madrid, Galicia, Tenerife, Valencia and Seville.
What are the situations, perhaps unexpected, with which a person who cares for a patient with Alzheimer’s has to live?
We speak of families with Alzheimer’s because the disease does not affect just one person, but the whole environment. The diagnosis always implies a certain state of emotional shock because from one day to the next a disease arrives that has no cure and that implies an uncertain future. For other people, on the other hand, it translates into a certain relief because, finally, they can name a situation that was affecting them but that they did not know how to recognize.
When the disease progresses, a series of dependencies begin to appear because the sick person can no longer be 100% autonomous and must be replaced in many tasks by another person. This means that the people around them have to progressively incorporate supervision tasks that reach 24 hours a day. Later, this supervision also involves physical tasks related to daily activity: dressing, eating, etc. Here are a series of resources that exist in our society, such as day centers or residences, to help the caregiver. This, as I said before, affects the economic life of the family, because care must be delegated, and work life. 70% of caregivers take a reduction in working hours so that the full time and the care task are not compatible.
Who is the majority of these care tasks?
In our program we try to distribute care tasks among different members of the family. The truth is that normally this is not the case and the one who assumes the most care tasks is the woman. This situation can lead to family problems because it creates tension.
How do these care tasks impact the physical and emotional health of caregivers?
There are some common traits for the main caregiver. One of them is guilt. No matter how well you do, there is always a feeling that accompanies them throughout their caregiving life of “I’m not doing well enough” or “I’m not doing enough.” They also feel frustration and helplessness because, being a mental illness, the person with Alzheimer’s shows neither docility nor appreciation for what they do for them. They often see the caregiver as someone who restricts their freedom.
How does a therapy group session go and what kind of support is offered?
We meet weekly for a half hour about four months. Ten caregivers and a psychologist participate in these meetings. In each session we work on a topic related to Alzheimer’s disease: communication with the patient, empathy, grief, activities of daily life, community resources, etc. They not only receive information about the disease but also create a space to express how they feel in relation to this issue. Under the umbrella of cognitive behavioral psychology, guidelines are given to change negative thoughts and positive reinforcement and practical solutions are worked on. Relaxation techniques are also taught because another very common emotion in the caregiver is anxiety.
When these four months are over, a monthly follow-up is done for six more months.
What positive results do therapeutic groups provide?
Through psychometric questionnaires, we have demonstrated an increase in the quality of life, a better mood and an increase in the perception of social support. They also have more resilience, more capacity to face difficult situations and come out stronger. Many explain to us that going through the group has changed their lives because they can better control their emotions and understand how the disease works. They also regain their social life.
Care tasks are often invisible in our society. Who should take care of the caregivers?
I argue that the public system should take care of the caregiver and that the CAPs should monitor both the sick person and the caregiver. In this way, the anxiety or stress characteristic of the person who cares would be prevented from ending up being pathological and this would even be economical for the system.
In Barcelona there is a lot of awareness of the importance of care but we still have many challenges ahead so that the caregiver does not feel alone.