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Les troubles de l'esprit
Depression and Manic Depression
Anxiety Disorders
Alzheimer’s-type Dementia

Help Link : L'aidant familial en 8 questions Link : La famille et les proches Link : Démence : Sombres perspectives
Link : Familles en Alzheimer Link : Back to School May Help Those with Alzheimer's Link : Pour une meilleure prise en charge des résidents en établissement médico-social Link : Alzheimer-bottin
Link : Baluchon Alzheimer Link : Le Baluchon en Belgique Link : Neuromedia Link : Fédération québécoise des sociétés Alzheimer
Link : Société Alzheimer Canada Link : Association France Alzheimer Link : Association Alzheimer Paris Familles Link : Alzheimer’s Association
Link : Maladie d'Alzheimer : conseils pour la famille Link : What's the Best Alzheimer's Care? Disappointing Results from a French Study Link : Can Community Involvement Prevent Memory Loss?

As a person’s Alzheimer’s progresses, his or her friends and family experience various kinds of mourning.

They mourn the loss of predictability, because the person’s behaviour becomes harder to foresee. Family caregivers no longer have any piece of mind, because they must now be constantly thinking for the other person.

They mourn the loss of normality, because the person behaves in such unusual ways that daily life necessarily becomes different.

They mourn the loss of their former roles, because often roles are reversed, with the child becoming responsible for the parent, for example. The tasks assumed by each member of the family can be completely changed.

They mourn the loss of the past relationship, because the further Alzheimer’s progresses, the less the people who have it recognize the people around them. They also become disoriented in time and space, can no longer express themselves properly, and so on. In short the bond may no longer be what it once was.

Lastly, family members and caregivers experience anticipatory mourning: they mourn the loss of someone who is not dead but has lost so many of his or her mental faculties as to no longer recognize them. In the most advanced stage of Alzheimer’s, the person may be physically present but show no perceptible signs of awareness of self or of other people.


Alzheimer’s disease affects not only the people who have it, but their loved ones as well. About two-thirds of all people with Alzheimer’s are cared for by their families, who thereby enable them to continue living at home.

The impact of Alzheimer’s on immediate family members is thus considerable. In France, for example, 70% of the spouses and 50% of the children of people with Alzheimer’s spend more than 6 hours per day caring for them. Half of the children (usually daughters) caring for parents with Alzheimer’s must rearrange their work lives to do so.

As people with Alzheimer’s bit by bit lose their ability to reason and to express themselves, they become more and more dependent, so that it takes more time and energy to communicate with them. Some behaviours that they may rarely have displayed before, such as aggressiveness, may occur more often and be hard for their family caregivers to accept.

The difficulties of caring for someone with Alzheimer’s can affect family caregivers in various ways.

Emotionally, it can be distressing for them to see their loved ones’ mental and physical faculties deteriorate.

Psychologically, the main threats to family caregivers are isolation, stress, exhaustion, and loneliness. When people are in the advanced stages of Alzheimer’s and require the most attention from their caregivers, most caregivers tend to reduce the frequency of their interactions with their extended families, friends, and acquaintances. As a result, they become socially marginalized, which can undermine their morale.   

Physically, the additional workload of caring for someone with Alzheimer’s leads more than 80% of family caregivers to experience physical fatigue. The quality and amount of sleep that they get are also often affected. About 20% of all family caregivers report taking more medication or experiencing medical problems, though they often don’t even have enough time to go see their doctor.

Lastly, financially, the direct and indirect costs of caring for an Alzheimer’s patient are considerable; for example, in the United States, they run into several tens of thousands of dollars per year.


Source: Alzheimer's Helpers

Thus, when someone takes on the new role of caregiver for a relative who has Alzheimer’s, the situation is heavily loaded emotionally. The need to gradually take over their relative’s responsibilities and to make decisions concerning him or her can be a major source of stress. Not to mention all the effort involved in seeing to their relative’s medication, feeding, hygiene, safety, and so on.

In addition, the new caregiver must go through the various stages of accepting the realities of a degenerative disease. Each caregiver follows his or her own personal path, and some of these stages may overlap, but in general, the sequence is as follows.

In the first stage, denial, the caregiver tries to believe that the relative is simply experiencing normal aging and that the situation is not so bad as it seems. The next stage is anger, toward the doctors, toward the health-care system, or even toward the sick relative—in other words, toward everyone and everything that tends to confirm the diagnosis. Next comes bargaining, in which the caregiver looks for a solution that might change the situation. After that comes depression, often when the caregiver realizes that the process is inevitable and incurable, and that he or she must become the sick relative’s helper. Last comes acceptance, with its share of contradictory emotions: on the one hand, the hope that their loved one will die soon, so that their suffering will end; on the other, the hope that they will not die, because the loss would be so hard to bear.

To get through these various stages, caregivers must first recognize them and then accept them as a normal process involving a succession of various forms of mourning (see sidebar). Caregivers must also accept the many moments of discouragement and impatience that they will feel, which are entirely normal, given the daunting task they face. No one is indestructible, and it is essential for caregivers to recognize and respect their own limits. In this sense, it is always preferable to focus on the kinds of activities that they can still do with the sick person, rather than on those that they no longer can.

Caregivers should therefore take care of themselves too and make sure to take enough time off. Making some time for yourself to relax and take your mind off your troubles does not mean that you are being selfish or neglecting your loved one. On the contrary, by “recharging your batteries” from time to time, you will be able to take care of them better and for longer. ”

In addition to getting help from friends and relatives, caregivers can also seek out the various forms of support that are available from health professionals and from the Alzheimer Societies that are active in many countries. These societies have close ties with many helpful resources, such as community centres, prepared-meal services, homemaking services, caregivers’ support groups, and transportation services.

There are also centres that provide daycare for people with Alzheimer’s so that their caregivers can enjoy a bit of respite. In Canada and Belgium, an organization called Baluchon Alzheimer offers a service in which someone provides live-in home care for one or two weeks so that the family caregiver can take a vacation without having to put his or her relative in a short-term care facility. 

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