Quality of life in Alzheimer’s disease

During the more than 10 years I’ve been working with Alzheimer’s disease patients and also with their families, there has always been a struggle to find out what quality of life means in the disease, who suffers less, or who is being given more or fewer opportunities to live with dignity.

Let me explain: it seems to be an unwritten rule. When family members get together to talk, this topic almost always comes up, and as with everything in life, everyone thinks they have the absolute truth about what the best decision is so that the patient has what is called quality of life. Even those who do not provide care have opinions on what should and should not be done so that the patient attains that much-desired quality.

I believe that what we should seek is not quality of life but quality of care during the illness, because each person understands life differently and each caregiver is responsible for their decisions regarding the patient, actions that, moreover, always come from the heart of the caregiver and with the fundamental premise of wanting the patient’s well-being.

For that very reason, and because no one teaches us how to care, I believe that quality of life in Alzheimer’s should be replaced by quality in the illness, a curious term of my own making but which has  for me a very logical meaning.

The life of an Alzheimer’s patient goes through many stages that, when seen from the outside, can cause us sadness and unease; therefore, I believe that thinking about the patient receiving, at each stage, care and attention appropriate to their needs is quality of care and  therefore, quality of life. It is, after all, living the illness with quality. Cognitive therapies, pharmacological treatments, accurate diagnoses,  reduced waiting times for tests, information for the caregiver, reputable associations, discussion and opinion forums, reliable websites… and all kinds of attention along the course of the illness are the perfect tools to provide quality of life to the person affected.

We must not forget that this disease requires us to change strategies every so often; you know it is capricious, insidious, and surprising, so adapting to what comes as caregivers also means we provide the patient with quality of life.

Each patient requires different kinds of attention; no one progresses the same way, symptoms and stages always depend on many factors, and knowing how to anticipate them is to add quality to the patient’s journey through the illness.

Quality of life is a subjective, elusive term with blurred boundaries when we talk about certain ailments and even more so when we face a disease that produces total and absolute deterioration in patients; therefore it is vitally important to rely on professionals, and above all to understand that quality of life in the Alzheimer’s patient is that which manages to combine good professional and non-professional care with solid information and professional support in decision-making as the disease advances.

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“This article has been translated. Link to the original article in Spanish:”
Calidad de vida en la enfermedad de Alzheimer