Interview with the Expert Caregiver at Fundació ACE

Angélica Navarro: "This experience has helped me to turn my sad experiences into satisfactory ones"

One of the many activities that the coronavirus has interrupted and abruptly ended is the first edition of the Expert Caregiver Program at Fundació ACE. This program of the Generalitat de Catalunya is proposed as a group learning space for caregivers of people with dementia. The aim is to improve their quality of life by exchanging experiences with a caregiver who has already gone through all the phases of dementia in the role of caregiver.

Precisely for this reason, the cornerstone of the project is to be able to choose this Expert Caregiver who will guide others and give them support and accompaniment to ease their burden. Angélica Navarro, the Expert Caregiver selected by ACE and by the Generalitat de Catalunya, was the person chosen to lead these sessions at the foundation. 

In this interview, conducted from a distance because of the confined situation, Angélica explains that she would prefer not to be called an "Expert Caregiver", despite everything. "I don't consider myself an expert in the care of people with dementia. That's why there are already professionals in day centers and hospitals. I did what I could when I had to."

Angelica, what has it meant to you to be the expert caregiver of this pioneering Fundació ACE program?
For me, it has represented a great responsibility and the opportunity to share my experience as a caregiver with very valuable people. Having lived similar situations to those shared during the program, I have been very empathic with the participants. 

In this sense, and taking into account your connection with the participants, how do you value this experience? Would you recommend it to other potential expert caregivers?
I value it and I am very grateful. This experience has enriched me as a person and has helped me to turn my sad experiences into satisfying ones. That's why I think it's worthwhile to be able to participate in a program like this.

What problems did the participants in the Expert Caregiver program pass on to you? What were the most common ones?
Everything related to the different situations that arise during the care and attention of a person with Alzheimer's in your immediate environment and how they can be confronted and resolved.

It is perfectly understandable. And what doubts or concerns do you think are the most frequent among the caregivers of people with Alzheimer's?
The greatest and most general concern is that the caregiver has the possibility of becoming ill or having something happen to him or her and, as a consequence, not being able to continue caring for the person who needs it. The responsibility that caregivers have in this sense is very great, and that makes them ask these types of questions and fears.

That's very interesting, Angelica. And what do you think the participants in these sessions have learned?
First of all, that they are not alone and are not allowed to be alone. Also, the program is quite complete and doesn't leave any issues on the air. The truth is that it contains a lot of useful information.

And you, what have you learned from sharing your own experiences?
I've learned that the love we have for our family member unites us with the other caregivers. No matter how much time goes by or when: we have a common feeling. But the needs are different and the shocks are different for each age and for each process. Assuming Alzheimer's disease at a certain age can be very hard.

Of course, it can be very hard. Angélica, what can you tell us about the dynamics of the sessions? Has it helped the participation of the participants?
It is good and agile, as it allows us to participate in everything, as many topics of interest are touched upon, from how to maintain a healthy diet and lifestyle during the disease to the legal resources available to caregivers of people with Alzheimer's. Many keys have been touched, all of which are necessary to adequately accompany any process and so that family members don't feel helpless.

Do you think that the Expert Caregiver program will help improve the lives of caregivers?
I think so. The programme makes you think about many specific issues, and the participant knows that it is important to carry it out, because it is made for him or her.

In your view, what other measures or programmes or actions can countries do to not neglect the needs of caregivers?
In my opinion, the role of the caregiver is, after the affected person, the most important; it is essential. The caregiver gives himself or herself completely to the person with Alzheimer's and is aware of the responsibility he or she has and assumes. I believe that he or she should be prepared psychologically to face his or her reality, because of the intensity in time and the various situations they will have to deal with.

What emotions or feelings do you think are most difficult for this group to deal with? 
All those emotions related to helplessness, sadness, loneliness and the certainty that our life has changed and we can't do anything about it. Alzheimer's is like a scythe that cuts your life short. The person you love and care for changes and is no longer the same person you knew before.

That's an impressive description you give, Angelica. And, on the social level of friends and family, do you think there is enough support for caregivers? Is there still stigma? 
This depends a lot on each family and each environment; especially on the generosity of its members to help the person with Alzheimer's and the caregiver and not leave them alone. I believe that stigma is associated with indifference and selfishness, and I would like to think that there is less and less of it. At least, I hope so.

I do want to thank all the people who have made and managed this Expert Caregiver program at Fundació ACE, because they have given the best of themselves thinking about all of us, about families and about how to help the caregivers of people with Alzheimer's.

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