To introduce this article, a short presentation of Alzheimer’s disease is needed first. It is a degenerative and progressive disorder of the central nervous system. It is characterized by a continuing deterioration and a modification of the behavior and the intellect.
It was discovered by Alois Alzheimer in 1901. Back then, he observed some brain anomalies on a patient. He was the first to talk about this disease, that’s why it’s named after him. This disease stands as the first cause of dementia, In fact, approximately 60 to 80% of people diagnosed with dementia have Alzheimer. It usually comes up around the age 65 years old. In 2018, we evaluate the number of affected people at 10 millions in Europe and 35 millions in the world. In 2015, these numbers were at 18 millions in Europe and 100 millions in the world.
Concerning the etiology, we do not know what are the origins. It is estimated that 95% is linked to unknown causes, 5% to familial causes and 1% to the genetic. This disease is characterized by specifics symptoms which are disorientation, non-recognition of familiar places, loss of objects, alteration of behavior and mood, or memory disorders.
Generally speaking, this disease concerns old people most of the time, and when the first symptoms appear, the patient is still living at home with her husband or his wife.
Recently, medical institutions learned to take care of patients, but little interest has been given to caregivers, even if they are the first responders. Many studies try to understand the role and the impact of this role on caregivers. Distinction is made between natural helpers and professional helpers. In fact, these people are the first to administrate treatment. Insofar as symptoms at the beginning of the disease are pretty negligible, the family usually decides to keep the patient home and keeps taking care of him or her like they always did. I realized an interview with a woman who has lived with her husband diagnosed with Alzheimer for months. She explained to me that even if it was a very difficult task, she could not stop taking care of her husband because they promised to take care of each other, and she could not let him go to an institution. She would feel guilty.
This culpability is often the reason of the uneasiness which provokes a deterioration of caregivers’ physical and mental health. This article contributes to an easier understanding of this. The aim of it is to describe the quality of life (QOL) for natural helpers of patients with Alzheimer’s disease and to determine what are factors that affect their QOL. This article is mainly addressedto healthcare professionals. Ercole Vellone and his collaborators realized this research in Italy, they also said that 80- 90% of the patients are taken care of by family members in this country.
Concerning the participants, researchers recruited eleven men and twenty-one women from the gerontology department of the medical center in Rome. Only people involved in caring for a parent or a friend were eligible. Among these caregivers, twenty-one are spouses, nine are children and two are friends. Total is 32. The average age was 62 years old. Twenty-five of the 32 people lived with the patient and cared for him for about 15 hours per day.
Concerning the protocol, researchers explain the aims of the study, then they realize
interviews in Italia. Caregivers are separate from patients during it. The interviews were realized from November 2004 to June 2005. During the interviews, investigators asked the following openended questions :
– Considering the fact that you take care of a person affected by Alzheimer’s disease, what do you think your QOL is like?
– Which factors do you think could improve your QOL?
– Which factors do you think worsen your QOL?
During the interview, caregivers are encouraged to describe their experience. When they have nothing to say, they answer the next question. Each interview took about half an hour, they are recorded and transcribed. Concerning the results, the interviews allow researchers to realize three groups of items which are described. In fact, they grouped together similar key words and phrases.
Firstly, for most participants, QOL meant serenity, tranquility and psychological well-being. What is interesting when they answer to the first question is that they mention how their life was not like the ideal they describe. For this question, a lot of participants express the change of their opinion since their close family member are sick. One of them said “before my mother had Alzheimer, we had a good relationship and our lives were serene, but now we both are not serene anymore.
For others, the disease changes completely the meaning of QOL. One of them also said “QOL for me used to mean living in good health and being tranquil and serene. Now that I care for my sister, QOL means having strength for her, patience and constancy to stay next her, giving her love”.
Secondly, for most of them, QOL also mean freedom. But they also express the fact they are not free anymore. “For me, good QOL is to be able to organize one’s own day with complete freedom. It is about a year since I want to go to the theater, to visit friends, but I can’t do it because of the care I have to give to my husband”.
Then, participants also define general well-being, and talk about the fact that they can not take care of themselves. “You can have a good QOL if you are in good health. Since I care for my husband I can’t care for my health anymore. I do not have time to go to the doctor…I have to care for my husband. I can’t leave him alone! I have no relative or friends who can care for him for a while, to allow me to go to the doctor”.
About the question: “which factors do you think could improve your QOL?”, participants
answered:
– A good health of the patient
– Independence from the patient
– More help in caring
Regarding the factors that can potentially worsen their QOL, participants talk about worries for the future and progression of the patient’s illness and the stress that comes along with it. Authors noticed that when we just ask which factors do they think improve their QOL, they answered what is expected but also talk about their experience and remind the interviewer that all those words, like serenity and well-being, do not actually match what they are living, without it was even asked from them.
It also brings out the idea that they can’t take care of their health because they lack the time for themselves. This article brings to light that despite their change of QOL, caregivers keep taking care of their close family members.
To conclude, those researchers bring to light the poor quality of life for informal caregivers of people with Alzheimer’s disease is associated with the poor quality of life of the patients. To say more, it has been demonstrated that informal caregivers are more exposed to stress, burden, anxiety and depression.
Words I have learned :
– caregiver : aidant naturel
– among : parmi
– to bring to light : mettre en lumière
– burden : charge, fardeau
– uneasiness : inquiétude, malaise
BRUNET Léa, Master PPCECC.