The crucial role of caregivers for Alzheimer’s patients

2023-09-21 09:13:31

The crucial role of caregivers for Alzheimer’s patients

Some 800,000 people suffer from Alzheimer’s in Spain, according to data from the Spanish Society of Neurology (SEN), although cases may be around one million. In the world, more than 50 million people suffer from this disease and estimates for the future are on the rise. The role of caregivers is essential.

Every year about 40,000 new cases of Alzheimer’s are diagnosed in Spain, of which more than 90 percent correspond to people over 65 years of age.

SEN calculations suggest that in Spain there may be almost two million people with Alzheimer’s in 2050.

Alzheimer’s is the most common neurodegenerative disease and the main cause of dementia, accounting for between 50 and 70 percent of the total.

Therapeutic adherence in Alzheimer’s is important, but the truth is that, as neurologists point out, there are no treatments that stop the course and evolution of the disease.

However, correct therapeutic adherence contributes to improving the patient’s quality of life, which continues to decrease.

Essential role of caregivers in helping Alzheimer’s patients

“Your medications”the videoblog that EFEsalud and the Viatris para la Salud Foundation jointly promote to promote and improve therapeutic adherence, focuses in this new videoblog on Alzheimer’s, but places emphasis on the figure of caregivers, a role that is important in most diseases, in the case of Alzheimer’s it is essential, as neurologists and caregivers themselves emphasize.

With this objective, we have brought together a neurologist and a caregiver at the HM Torrelodones University Hospital (Madrid) on the eve of World Alzheimer’s Day, September 21.

The neurologist is the Dr. Marta Ochoa, head of the Neurology Service at HM Hospitales Madrid and president of the Spanish Association of Neurosciences; and the caregiver is Verónica Unturbewho has cared for his mother for many years.

Doctor Ochoa: training, patience, routine, perseverance and alliance with the doctor, advice for caregivers

Dr. Ochoa, what is Alzheimer’s, how does it evolve and what is its prevalence?

Alzheimer’s is a neurodegenerative disease and this means that cognitive and memory deficits progress. It is not caused by an infection or another type of dementia.

Its evolution, unfortunately, is towards progression and degeneration, because, at the moment, there is no treatment that truly modifies the course of the disease.

The prevalence in Spain is about 800,000 people, or almost one million, because there are affected people who are not diagnosed.

Dr. Marta Ochoa talks about Alzheimer’s/EFE/Pablo de Orduña/Félix Herranz

What impact does Alzheimer’s have on the quality of life of patients, family members and caregivers, because there are more women than men?

For the patient, it depends a lot on the phase in which he is, since not only does he lose his memory, a fundamental deficit, he also loses cognitive abilities and stops having what is the essence of the human being, everything that the human being It is cognitive.

Initially, patients suffer because they are aware. In the middle or advanced phases, those whose quality of life changes are family members and caregivers. Family members no longer have the figure of their mother or father as they knew them, since they stop recognizing their children, they have behavioral problems and they become different people. And for caregivers, it is a tremendous time and emotional burden.

What effects do the treatments have and to what extent do they stop the progression of the disease?

The treatments that we have approved in Spain do not change the course of the disease; They can slightly improve some deficits such as attention. Above all, we provide symptomatic treatments for aggression, sleep disorders or depression, waiting for better treatments that do not exist now.

Dr. Ochoa, what is the message for caregivers?

Patience, training, perseverance, routine and alliance with doctors. Our obligation is to train them and we have to make doctors aware of this task, and caregivers must demand that we be by their side and go hand in hand. We are three, patient, caregiver and doctor.

Dr. Marta Ochoa during the recording of the videoblog/EFE/Pablo de Orduña/Félix Herranz

Doctor, how do caregivers collaborate in therapeutic adherence?

It is not that they collaborate in therapeutic adherence, it is that they are essential. The patient, even in the initial phases, cannot take responsibility for their treatment, they do not know how to tell us their symptoms or their problems, they are not aware of the deficit they have.

Therefore, the base is the caregivers, and in adherence to treatment they are the ones who have to give them the pills and, above all, tell the doctors about new symptoms and problems.

The role of caregivers in the face of Alzheimer’s

Verónica Unturbe, what role do caregivers play?

It is a role that evolves depending on the phase of the disease. As the doctor has said, it is a progressive disease that progresses little by little, and at first the patient is able to do certain tasks and routines of the day, but later, it is the caregiver who assumes all control and all the help in all of them. tasks 24 hours a day.

The role of the caregiver is essential, the patient cannot live without the caregiver.

Verónica Unturbe talks about the role of caregivers of Alzheimer’s patients/EFE/Pablo de Orduña/Félix Herranz

What is the impact of Alzheimer’s on patients and their families?

On patients, the impact is total. They go from being a perfectly capable person to, little by little, losing their abilities, memory, cognitive and motor skills. At first it is very hard and they suffer a lot because they know what is going to happen, they are going to become a burden for others, they are going to stop knowing their family, and they think about the hard role that the family and caregivers will have to assume. .

For the family member, the emotional impact you receive when you are told that a relative of yours has Alzheimer’s is very strong, but you have to accept it, and after the impact phase, families need a lot of coordination, a lot of support, since you have to take very difficult decisions and require agreement among everyone and, sometimes, depending on family circumstances, it may not be easy.

What do caregivers need and don’t have?

Two things. First, training and information; We don’t know if what we are doing, even if you put all your love and effort, is the right thing to maintain or delay the capabilities that are going to be lost. There is a need for training that must be given by doctors, therapists, or day centers to which patients go and whose work is fundamental and have a lot to teach us.

And the second thing, they need help in the social sphere, help from institutions, because the impact is very great. It’s 24 hours of dedication, it changes the pace of your life, which was already accelerated, and all your schedules and family organization are thrown out of whack.

Verónica Unturbe during the recording of the videoblog/EFE/Pablo de Orduña/Félix Herranz

What do you advise caregivers and how do they contribute to correct therapeutic adherence?

To the caregivers, let them rest, take turns among family members and give the patient all the love possible.

Regarding therapeutic adherence, adherence is not the responsibility of the patient, it is an adherence of the caregiver, of the caregiver’s perseverance in finding the methods, resources and ways for the patient to take the medication.

The caregiver is the one who must be in contact with the doctor to ask or propose a change in the medication regimen, temporary or permanent, depending on the behavior of the patient with Alzheimer’s and the evolution of the disease.

From left, to right, Javier Anitua, director of the Viatris Foundation for Health; Veronica Unturbe; Javier Tovar Dr. Marta Ochoa; and Carlota Castañeda, from the Viatris/EFE/Pablo de Orduña/Félix Herranz Communication team

EFEsalud and the Viatris Foundation They maintain their common goal of raising awareness in society about the importance of taking medications correctly and improving levels of therapeutic adherence..