Caring for someone close with Alzheimer's disease or another dementia

1. Before you begin

It is six in the evening. Your mother asks you, for the fifth time since teatime, what time your father will be home. Your father died six years ago. The first time, you reminded her gently, and she cried as if she were hearing it for the first time. The fifth time, you answered more sharply than you would have liked, and she looked at you with that lost expression that ties your stomach in a knot. Tonight, once again, you will have to negotiate her wash and hide the car keys. And tomorrow, start all over again.

Perhaps you are wondering whether you are going about it the wrong way, whether she is doing it on purpose, and how long you can hold out.

Three things, straight away.

What your loved one does is not aimed at you. The illness damages memory, then the ability to understand what is happening and to find one's bearings; in Alzheimer's disease, the most common form, it is recent memories that fade first. The repeated questions, the refusals and even the accusations are what a person does when they no longer understand what is going on around them and are trying to reassure themselves with what they have left.

A great deal can be improved, even as the illness progresses. The illness cannot be cured today. But most difficult behaviours have a cause that can be looked for: pain, fear, a need the person can no longer put into words, a place that confuses them. And carers who learn a few specific strategies are better off, with an effect that can still be measured six years later.

Your health matters as much as theirs. Carers of a person with dementia are more often depressed and stressed than people who are not caring for anyone. This is not a weakness: it is the effect of a heavy load that goes on and on. Section 12 is devoted to you, and nothing stops you from reading it first.

2. Understanding the illness

A word that covers a group of conditions

The word dementia does not mean madness, and it does not refer to one specific illness. It refers to a decline in the abilities of thought (memory, language, attention, orientation, the ability to organise an action) marked enough that the person can no longer manage their daily life alone. Doctors also speak of major neurocognitive disorder: it is the same reality under another name. According to the World Health Organization, around fifty-seven million people were living with dementia worldwide in 2021.

The most common causes

Alzheimer's disease may contribute, according to the same organisation, to 60 to 70% of dementias. Abnormal proteins first build up in the regions of the brain that record new memories: the first sign is therefore often difficulty holding on to what has just happened.

Vascular dementias come from damage to the blood vessels of the brain, after one or more strokes (when an artery in the brain becomes blocked or bleeds) or through the slow wearing down of the small arteries. Their damage often adds to that of Alzheimer's disease: this is then called a mixed form.

Lewy body disease, named after small clumps of protein that form inside brain cells, can be recognised by marked variations from one moment to the next, by visual hallucinations (seeing people or animals that are not there), by sleep in which the person acts out their dreams, and by a stiffness similar to that of Parkinson's disease. Some medicines for hallucinations can cause serious reactions in this illness.

Frontotemporal degeneration damages the front of the brain, which governs how we behave with other people. It often begins before the age of sixty-five, with a change in personality rather than with forgetfulness, and people often think first of a mental health problem, such as depression.

Identifying the cause is a matter for the specialist doctor. If the report only mentions "cognitive problems", ask which cause has been identified.

What the illness erases, and what it leaves for a long time

Imagine a notebook whose pages are torn out one by one, starting with the last. What happened ten minutes ago can disappear; what happened fifty years ago often remains clear. This is how your mother can describe her wedding in detail and wait for her husband to come home from work: at times, she is living in a period when that was true.

Other abilities hold out for a long time, and you are going to rely on them. Your loved one picks up the tone of your voice long after they have stopped following your sentences. They often keep skills learned long ago, such as folding laundry or singing. And their emotions can outlast their memories: in a small study by Edmarie Guzmán-Vélez and her colleagues, seventeen people with Alzheimer's disease were still sad more than half an hour after watching a sad film clip that they no longer remembered. A study this small does not prove everything, but it suggests that an argument can be forgotten quickly and still leave behind an unease that lingers.

When they do not realise

Many people with dementia do not perceive their own difficulties. This is neither bad faith nor psychological denial: the illness damages precisely the ability to observe oneself, which doctors call anosognosia. So you will not convince your loved one that they are ill, and repeated attempts end in arguments. Start instead from what they want, such as staying in their own home or continuing to have their grandchildren over, and look with them for ways to achieve it safely.

The stages, in broad outline

The illness progresses over several years, at a pace that varies a great deal. At the mild stage, paperwork, money and unfamiliar journeys become difficult. At the moderate stage, the person needs help to dress or wash, and behavioural changes are often at their most marked. At the severe stage, they depend on others for almost everything, and comfort comes first. These stages are landmarks, not a timetable.

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