Quality of life in Alzheimer’s disease
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.
Integradora Social y experta en Alzheimer. Además es docente y colaboradora de Supercuidadores y de la Universidad de Salamanca.
Latest posts by Merche Cardona (see all)
- Quality of life in Alzheimer’s disease - February 11, 2019
- The Caregiver’s identity in the face of Alzheimer’s disease - September 18, 2018
- The remains from a shipwreck: emotional memory and Alzheimer’s - June 19, 2018
Merche querida, tus comentarios sin clarísima, creo que la calidad de vida es simplemente el reflejo del amor y el respeto que pone cada uno de nosotros por ese ser que tanto se quiere y que tiene todo el derecho del mundo de ser cuidado y amado por quienes los cuidamos, protegerlos y hacer que su vida sea digna y de calidad no es nuestra obligación es nuestro sentimiento profundo por el ser querido, un abrazo enorme a todos los cuidadores y a todos los que de alguna manera sufren por esta cruel enfermedad, soy de Córdoba Argentina
Es fundamental atención medica y un estudio de la fase en que se encuentra. Importantísimo,el cairño, la atención, no contrariarlo y tratarle con respeto y alegría.
Los medicamentos son cosa de su médico. El cuidador tiene que ser muy paciente y tranquilo
Hola buenas tardes, soy Montse y soy cuidadora de mi madre desde hace ocho años, deciros que para mi, la calidad de vida es cuidar a mi madre con todo el amor incondicional que siento hacia ella manteniendo su dignidad como ser humano y respeto. Y velar por ella incansablemente para que así sea cuando la dejo en el centro de día, si confió en los médicos, pero sé también que con el paso de los años he aprendido a saber en cada momento lo que necesita.
Barcelona 12-02-19
Estimada Merche, acabo de leer este artículo y creo que ambos, tanto la prrsona que sufre de la enfermedad como quien la cuida, deben tener la posibilidad de tener una vida llevadera y “buena” hasta donde lo permitan las circunstancias. Tengo una gran inquietud en saber cuales son las diferencias y las similitudes entre el alzheimer y el síndrome desiejecutivo, porque no se si tienden a confundirse al comienzo de la enfermedad, lo digo porque a mi esposa le diagnosticaron pérdida de la capavidad cognitiva pero veo que hay cierta ambiguedad entre lo que dice el psiquiatra y la neuropsicóloga que la están tratando, y eso me crea cierta incertidumbre al respecto