Respecting the Dignity of the Sick – Alzheimer's Disease

“The most important need of people suffering from some form of dementia is the preservation of their dignity and self-respect,” states the book When I Grow Too Old to Dream. An important way to achieve this is described in the bulletin Communication, published by the London Alzheimer's Society: “Never talk [about the sick] as if they weren't there. Even if they don't grasp the meaning, they can sense that they're being excluded in some way, and experience humiliation.”

Some patients understand what's being said about them. For example, an Australian patient attended a meeting organised by an Alzheimer's association together with his wife. He later said: “The caregivers were taught what and how they should do things. I couldn't bear being there while no one even mentioned the patient. (...) It's very depressing. Because I have Alzheimer's, everything I say is meaningless – nobody listens to me.”

Taking Positive Action

There are many ways to help a sick person preserve their dignity. They may need support carrying out everyday tasks that used to be no trouble for them at all. If, for example, they used to keep up a lively correspondence, it's worth sitting down with them and helping them reply to letters from concerned friends. In the book Alzheimer's—Caring for Your Loved One, Caring for Yourself, Sharon Fish offers further practical advice: “Find something meaningful that produces visible results and that you can do together: washing and drying dishes, sweeping, folding laundry, or cooking lunch.” She goes on to explain: “A person with Alzheimer's disease probably won't be able to clean the whole house or prepare a whole meal, but the loss of these abilities usually happens gradually. Make use of the abilities that remain, and help preserve them for as long as possible. By doing this, you also make it easier for your loved one to maintain their self-respect.”

The sick person may not do some tasks very well, so you might have to sweep the floor again or wash the dishes once more. But they'll feel needed, and as a result, satisfied with their life. Praise them, even if something didn't turn out quite right. Remember that they did everything their declining abilities allow. They need constant encouragement and praise – all the more so, the worse they cope with various tasks. Kathy, whose 84-year-old husband has Alzheimer's, says: “At any moment, completely unexpectedly, he can feel useless. The caregiver has to encourage him right away – warmly reassure him that he's doing well.” One book acknowledged: “We all like to hear that we're doing our duties well, and in people with dementia this need is especially strong” (Failure-Free Activities for the Alzheimer's Patient).

How to Handle Embarrassing Situations

Caregivers must learn how to react when a loved one embarrasses them through their behaviour. One of their biggest fears is that the sick person will lose control of their physiological needs in company. Dr. Gerry Bennett explains in his book: “Such incidents don't happen often, and they can usually be prevented or their effects minimised. It's also important to understand what matters and what doesn't – one shouldn't worry about the incident itself or who saw it, but about the person's loss of dignity” (Alzheimer's Disease and Other Confusional States).

In such a delicate situation, don't shout at the sick person. Try to follow this advice: “Stay calm and reasonable, and remember that they aren't upsetting you on purpose. They'll also be more willing to cooperate if you're gentle and firm, rather than annoyed and impatient. Do what you can so that this problem doesn't strain your relationship with each other” (Incontinence, bulletin of the London society supporting people with Alzheimer's disease).

Should You Really Point It Out?

Patients with Alzheimer's disease often talk in a confused way. For example, they may claim they're waiting for a relative who has long since died. They also often have hallucinations. Does everything they say incorrectly always need to be corrected?

“There are parents who can't help correcting their children every time they mispronounce a word or make a grammatical mistake,” explains Robert T. Woods in his book Alzheimer's Disease – Coping With a Living Death. “As a result, the child often feels offended or withdraws, because they notice they're being discouraged from speaking up rather than rewarded for their efforts. A person with Alzheimer's can feel the same way when constantly corrected.” If constant scolding upsets children, how much more so adults! “It should be remembered that the patient is an adult and knows what independence and success mean,” warns the South African magazine ARDA Newsletter. Constant correcting can not only irritate the Alzheimer's patient, but also trigger depression or aggression in them.

We should be ready to adapt to situations in which a seriously ill person expresses strange but harmless opinions! Explaining to them how things really are would be the same as expecting – or even demanding – something beyond their abilities. Isn't it better to stay silent or tactfully change the subject, rather than start an argument?

Sometimes it's best not to convince the sick person that they imagined something, but to act as if you accept it as reality. For example, an Alzheimer's patient might be worried because they “saw” a wild animal or an imaginary intruder behind the curtain. This isn't the moment for logical arguments. Remember that what their mind “sees” is real to them, and these felt fears need to be dispelled. You could look behind the curtain and suggest: “If you 'see it again', let me know and I'll take care of it.” As Dr. Oliver and Dr. Bock explained in their book, by acting in line with the sick person's perceptions, you give them the feeling that the terrifying, frightening things their brain creates can be brought under control. (...) They know they can count on you” (Coping With Alzheimer's: A Caregiver's Emotional Survival Guide).

Applying all of this advice can be difficult, especially for people overburdened by work and other family obligations. A discouraged caregiver may sometimes lose their composure and fail to respect the sick person's dignity. In that case, they shouldn't let themselves be overwhelmed by guilt. It's worth remembering that, given the nature of the illness, the person in need of care will most likely forget the incident very quickly.

Supporting the sick person in carrying out daily tasks will help them preserve their dignity.

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