When this topic was first proposed to me, I did not hesitate one second in accepting to write about the quality of life in Alzheimer’s disease (AD). You may wonder why it took me only a moment to decide.
For over 10 years, I have been dealing with patients with Alzheimer’s and their families. One recurrent issue is the difficultyinunderstandingthe meaning of quality of life in Alzheimer’s disease, those who suffer less or who are being given more or less opportunities to have adignified life.
I mean, it seems to be an unwritten rule. When family members get together to talk, this issue almost always comes up and, as happens often, everyone claims to have the absolute truth concerning the best decision to make for patients to have quality of life. Even those who do not take care of patients with AD state what patients should or should notdo to have that quality of life.
I believe that it is not quality of life that we should strive for but quality of care for people living with illness since everyone understands life differently and each caregiver is responsible for their decisions regarding patients, which, at the same time, are always made from the heart and with the aim of ensuring the patient’s well-being.
For that very reason, and because no one is taught how to care for others, I believe that quality of life in AD should be replaced by quality during illness, a curious term of my own which has, for me, a very logical meaning.
The life of a patient with Alzheimer’s goes through many stages which, when seen from the outside, can produce sadness and uneasiness; therefore, I think that when patientsreceive care and attention at each stage according to their needs this means quality of care and, therefore, quality of life. It means, after all, to go through their illness with quality. Cognitive and pharmacological therapies, accurate diagnoses, reduction of waiting times for tests, information for care givers, reference associations, opinion and debate forums, reliable websites and all kinds of carethroughout the course of illness are perfect tools for providing quality of life for those affected with AD.
We must keep in mind that this disease requires us to constantly change our strategy, since it is capricious, insidious and unexpected; thus, adapting to changing situations as caregivers also makes us provide quality of life for the patient.
Each patient requires different forms of care since the progression of AD varies from one person to another; symptoms and stages always depend on several factors and knowing how to anticipate them means to provide quality for the patient’s journey through the disease.
Quality of life is a subjective, hard to define term when talking about certain ailments and even more so when we are faced with a disease that causescomplete and totaldecline. For this reason, it is of vital importance to rely on professionals and most importantly, to understand that the quality of life in patients with Alzheimer’s disease should combine good professional and non-professional care with good information and professional support in decision-making as the disease progresses.