Do’s and don’ts for Alzheimer’s caregivers
TAKING care of family members who have Alzheimer’s Disease can take a toll on you. Besides watching your loved one’s condition deteriorate and their memory fade, the repetitive questioning can wear you down.
As today (Sept 21) is World Alzheimer’s Day, 3Age gets some tips for caregivers from Associate Prof Dr Rosdinom Razali, consultant psychiatrist/geriatric psychiatrist at the Department of Psychiatry, Universiti Kebangsaan Malaysia Medical Centre.
Be prepared to repeat instructions and answers.
Prof Dr Rosdinom says that repetitive questioning is part and parcel of Alzheimer’s Disease. Family members should be ready to hear the same questions over and over and to keep answering patiently.
“They might ask you ‘Are we going out tonight?’ and they will keep asking the same question. You may find that in situations like that you have to repeat the answer. And for the next two weeks, even after you have gone out, they might still ask you that question.
“In a way, you do have to keep repeating yourself because they tend to forget. They would benefit from reminders to do things, particularly in the earlier part of the illness. The reminders can come straight from those who are living with them, but it can also be in many other forms, like a diary, notes, or phone alerts, if they still know how to use the handphone, particularly pertaining to the important things, like taking their medications,” she adds.
According to her, reminding them is good but too many reminders turns into nagging. This can sour the relationship between the person with Alzheimer’s and their family and caregivers.
“You have to evaluate the circumstances. Remember that people with Alzheimer’s have feelings. To some extent, depending on the severity of their condition, they can still feel and they know whether you are angry, you love them or if you are irritating them.
“For you to remind them often may not be good for that relationship. They might get put off and suddenly refuse to co-operate with you. So, you have to do it subtly. You may have to choose your words carefully,” she advises, warning that if they feel hurt, they can even slip into depression.
Never argue with them.
You should never confront or argue with those with Alzheimer’s, particularly if they are not aware of what’s going on. There’s no point arguing because you will get worked up, and they will get agitated.
This serves no purpose and is not beneficial to anyone. So, don’t argue. Just accept it if they forget to do something or if they can’t remember what you told them.
Keep it simple.
Prof Dr Rosdinom reminds family members that when Alzheimer’s strikes, the capacity to understand language becomes reduced and comprehension is also affected.
“Those who were very good at language suddenly can hardly speak a few words. Understanding and being able to communicate becomes worse as the patient deteriorates. So, we have to adapt. If we want our communication to be clear to them it has to be short and simple. Don’t use long sentences with bombastic words.
“For example, ‘Let’s eat now’. Instead of, ‘After you have finished washing up, I want you to join us for dinner’,” she says.
The instructions should be short and to the point. Never give two or three instructions at a time.
Agree with everything they say?
While some people believe that you should just go along and agree with everything the person with Alzheimer’s says, to avoid a confrontation, Prof Dr Rosdinam doesn’t agree.
“You have to see what it is about. If they have made a mistake and at that moment they seem to comprehend that it shouldn’t have been done, I think you can still advice them but make it simple. Who knows? The next time it happens, they might remember.”
Reminiscence therapy works.
Prof Dr Rosdinam says reminiscence therapy, where old photos are used to remind Alzheimer’s patients of their past, is a good way to try and delay the onset of memory loss.
“This is a controversial method. There have been some reservations as it can be very intense. For some people, remembering things that they are not happy about, might start some emotional turmoil. But, I think in patients who are moderately severe, it does bring joy instead of more harm, because if they look at something that they used to like and they still have some vague memories about it, they will start talking about it and you can see their face brighten up.
“But if you see that they suddenly look sad when looking at old photos, then perhaps you don’t do it. But, generally, reminiscence therapy and talking about things in the past is encouraged,” she adds.
Assess the situation and their mood.
Answering questions from those with Alzheimer’s is not always easy, as some questions are quite tough. For example, when they ask where is their spouse, forgetting that the spouse has departed.
Prof Dr Rosdinam says that the truth may upset them temporarily but they usually forget about it soon enough.
“The memory loss, in a way, is protective.
“There is no hard and fast rule to how to answer this question. You need to look at the situation and their mood.
“If they are looking around the house for their spouse, then perhaps you might ask them why they are looking for the spouse. If it’s because they want something from their spouse, then why bring up that he or she is dead? Because the Alzheimer’s patient will just say, ‘No, he’s not dead!’ Especially if she’s hallucinating and just saw him walking by or just heard his voice. You’ll just end up arguing.
“You can suggest that they sit down and watch TV while you look for the spouse. When you assure them that their spouse may be back later, they may feel relieved,” she says, explaining that this would be a good time to distract the person with other things. Unfortunately, she may start looking for her husband again after a while.
According to Prof Dr Rosdinam, different people have different reactions, depending on their background and personality.
She suggests families try different responses to see how the patient reacts. If you see that he is upset when you mention that the wife has died, then the next time he asks the question, you don’t reveal the truth and just say something like, “She’s gone out. Let’s wait for her to come back.”
Then, you need to distract him with other things.
“The distraction technique is very important,” she says.
Maintain their independence.
Prof Dr Rosdinam believes that as long as they can still do things for themselves, however slow it might be, we should let them do it, rather than do it for them. This includes dressing and eating.
“In the earlier part of the illness, they still want to be in control particularly if they are used to being independent. You just have to be ready for spills when they feed themselves. Only at the stage where they can’t feed themselves, then you will need to feed them. At that point, they might look at the cutlery and not understand how to use it, or not understand that the fish needs to be cut up. You will need to cut their food into small pieces and help to feed them,” she says.
Eventually, as their memory fades, you may need to tell them what to do.
“You may have to start making decisions for them at some point because they may say, ‘No, I don’t want to take a bath’ when they did not bathe for some days. They think they have just had a bath.”
Take care of legal / financial issues in the early stages.
She advises families to attend to the Alzheimer’s patient’s legal and financial issues while they are still in the early stages. At this point, the person with Alzheimer’s would be forgetful but can still be reasoned with and they can make decisions. They should write their will, get the power of attorney done and perhaps even transfer property over to the children.
Tread carefully when telling friends and neighbours.
If they have memory problems and it’s mild and they still have control, then the decision on whether they want relatives and friends to know about their illness is up to them. You should respect their decision.
However, as the disease takes control, the signs become more apparent. Sometimes the person’s personality changes and their friends and neighbours know that something is amiss.
Prof Dr Rosdinam advises family members to practise care when sharing the diagnosis with others as there is still a lot of stigma and not everyone understands Alzheimer’s. It should always be done tactfully while maintaining the person’s dignity.
She agrees that it might be beneficial to tell the neighbours if the Alzheimer’s patient’s condition deteriorates and there is a risk of him or her wandering out of the house.
Prof Dr Rosdinam advises family members to find out as much as possible about Alzheimer’s as it will help them understand the illness and their loved one’s behaviour better.
“It takes a toil on your patience, family, energy and work. When you understand the condition better, it makes you more tolerant of the challenges you are facing. And, sometimes it improves your bond when you know that someone close to you is down with a sickness, not due to madness, and he or she is not purposely making you angry.
“Keep in mind that a person with Alzheimer’s Disease is not having it by choice, it is an illness bestowed on them. So, we should be more understanding. We have to accept them. No matter how difficult they may be, they are still your parent, grandparent or spouse,” she adds.