Two Issues at the Heart of Alzheimer's Caregiving

Source: John Hopkins Health Alert - Caring for a loved one who has Alzheimer's is challenging and often perplexing. In this excerpt from a recent Memory Disorders Bulletin, clinicians from Johns Hopkins provide valuable insight and advice ...

Q. My wife (81 years old) is in the early stages of Alzheimer's, but even so, she is demonstrating some strange habits that she never had before. Unfortunately, I don't know what to do about them. Here are some examples: At nighttime, she now wants all the lights on in our bedroom. I put on a special sleep mask and I am able to sleep, but sometimes she will put the television on, which awakens me immediately. I try to turn down the volume, but she gets upset because she can't hear. As for my desire to sleep, she is not cognizant of that at all. My question: What can I do about the lights and TV so I can continue to help Irene and still maintain my own health?

A. Some people find that sleeping in separate bedrooms becomes a necessity when a spouse develops Alzheimer’s. If this would be safe, perhaps you should give it a try. Your wife is probably not able to understand or remember the fact that you have on a sleep mask unless she is looking at you and may not remember or comprehend why you need it. I am guessing that you have already tried to remind her of these facts but that she does not remember or understand them.

Q. I have started caring for my mother, who has had Alzheimer's for the past six years. After the second day at my home, I recommended that she take a shower but she adamantly refused. Now, it's the end of the first week and still no shower. Do you have any special tips on how to coax a reluctant person with Alzheimer's to bathe?

A. Keep in mind that bathing is an intensely personal activity. We generally do it alone once we become an adult and do not do it with a stranger unless we are at a health club or with a person of the opposite gender unless he or she is a spouse. As a result, people with Alzheimer’s often see being bathed by someone else as an invasion of privacy, particularly because they do not realize that they are ill.

Second, bathrooms and showers are usually small, enclosed spaces. Having another person in the bathroom probably feels uncomfortable for this reason as well.

Third, the shower process itself frightens many people with Alzheimer’s. They are naked, water starts falling on them for no clear reason and they may feel unsteady. Some spouses and family members report that showering goes better if they are in the shower with the person with Alzheimer’s. Talking their loved one through the process, hiring an aide of the same gender as the Alzheimer’s patient, switching to sponge baths or greatly decreasing how often the person bathes also are approaches worth trying.

HABILITATION: A BETTER CAREGIVING APPROACH

A quiet revolution is taking place in Alzheimer's care. The approach is called habilitation, and it has been credited with easing caregiver and patient stress, improving communication, and helping to maintain emotional bonds between individuals with Alzheimer's and their family members.

Habilitation focuses on respecting the feelings of people with Alzheimer’s and making the most of their remaining capacities, rather than trying to restore lost abilities (rehabilitation) - often in vain - or impose rigid standards for thoughts and behavior. Although the tenets of habilitation may seem intuitive, they run counter to the ways in which many Alzheimer’s patients are treated in nursing homes and family caregiving settings.

Accepting Their Reality
In the past, Alzheimer's caregivers were encouraged to practice "reality orientation" with their patients or loved ones. This meant constantly reminding the Alzheimer’s patient of the date and correcting the demented person's faulty beliefs and inaccurate perceptions in order to pull them "back to reality."

For example, if a person with Alzheimer's insisted that she had talked with her deceased husband on the phone that morning, a caregiver would remind her that he had died many years earlier. Oftentimes an argument would ensue, with the caregiver insisting that the person accept the reality of her husband's death. These attempts at reality orientation are not only frustrating and fruitless, but they often trigger agitation and angry outbursts from the patient.

Habilitation takes the opposite approach. The caregiver interacts with the Alzheimer’s patient on his or her own terms. The concept involves entering the person's world, offering patience and acceptance of their reality. In the situation described above, a caregiver practicing habilitation would say something soothing and reassuring, such as, "You and Harry love each other very much, don't you?" or "Tell me about Harry."

The practice of habilitation acknowledges that while a person with Alzheimer’s may not have the ability to reason or remember, he or she still feels emotion. As a result, caregivers do not attempt to reason with or correct the Alzheimer’s patient. Instead, they try to connect with the individual on an emotional level. Communication involves identifying the emotion behind the person's words and finding a way to address and validate those feelings.

Streamlining Their Space
A major part of habilitation is accommodating your loved one's physical reality as well, which means simplifying the living environment and keeping it as free of distractions as possible. This can help the person to continue to perform self-care tasks and simple household chores that promote independence and feelings of competence. Keep clutter to a minimum, reduce noise, and adjust lighting to minimize shadows, which can confuse or frighten a person who has Alzheimer’s. Dimmer switches on lights can be used to control light intensity. This can be helpful in reducing late afternoon and early evening agitation known as sundowning by increasing light intensity at these times of day.

Remember to break chores into simple steps and to provide only a small amount of information at a time. A caregiver following the tenets of habilitation tries to remain positive, calm, and encouraging and to refrain from criticizing and pointing out mistakes.

Enriching Their World
Most individuals with Alzheimer's disease get pleasure from doing things that they have always enjoyed, so it's important to pursue leisure activities that they find pleasing. Create opportunities for success by considering what they liked doing in the past and determine if there are activities that the person can still accomplish without becoming frustrated or agitated. Depending on the stage of Alzheimer’s disease the person is in, these might include crafts and hobbies, making or looking at scrapbooks and photo albums, stringing beads, baking cookies, going for walks, listening to music, or any other enriching activity that can keep the person occupied and engaged.

Social contact and physical activity are also important. Taking walks together in the neighborhood or mall, window-shopping, gardening, and planned activities at a senior center are just a few of the possibilities.

(Source: Johns Hopkins Health Alerts, August 31, 2009)

Medical Disclaimer: The information on this page is not intended to substitute for the advice of a physician.

CARING FOR A MEMORY-IMPAIRED PARENT

(By Professor Dr Philip Poi Jun Hua, Consultant Geriatrician from University Hospital-UMMC, Malaysia & ADFM Panel of Medical Advisers)

THERE are an estimated 50,000 to 60,000 people with significant memory impairment in Malaysia. As a result, there is a silent, unrecognized band of Malaysians – mostly women (daughters) – who have chosen to take care of a loved one with such a condition, e.g. Alzheimer’s disease. This is a demanding job in itself, but many are not only care-giving. They are also raising their own children – and maybe working – at the same time.

For anyone in this situation, squeezed between the responsibilities of parent and caregiver, days are spent preparing lunches and making sure medications are taken, checking homework, and filling out health insurance forms. For the caregiver, his or her marriage, family, career, and health will be tested.

Being a caregiver does just mean taking care of a loved one 24 hours a day. If you are helping a parent out with the basics of living, and your visits have stopped being social and become a necessity, you have become a caregiver.

Taking care of someone with Alzheimer’s is too much for one person. You’ll need caregiver support from your spouse, siblings, doctors, local and national organizations; and of anyone else who offers it.

The Long Haul

There are seven things you need to accept about your future as a caregiver.

Your loved one may live for many years. The life expectancy of someone with Alzheimer’s depends on the age at which the diagnosis was made. Many people with Alzheimer’s disease live eight, 10, or more years. Becoming a caregiver is a serious, long-term commitment.

The demands of care-giving will increase. As the disease progresses, your loved one will need more and more help. In the early stages of the disease, caregivers spend about 14 hours a week on average caring for the person. In the advanced stages, it becomes a full-time job.

Being an Alzheimer’s caregiver will affect your family. There may be ways to get your children involved that will not only give you, the caregiver, support, but will benefit your loved one and transfer the care ethic to your children.

Care-giving will affect your finances. This is usually due to the cost of medications and the need to have an extra hand in the form of domestic help or a nurse.

Do not try to do it alone. Taking care of someone with Alzheimer’s is too much for one person. You’ll need caregiver support from your spouse, siblings, doctors, local and national organizations – and from anyone else who offers it.

Care-giving requires skills. Caring for someone with Alzheimer’s disease does not come naturally any more than lecturing on physics comes naturally. Care-giving for someone with dementia is not like looking after another child. Sometimes the logical, natural thing to do is the wrong thing.

The common problems faced by children looking after parents with memory impairment are usually a result of a lack of information on how to handle this new situation. You need to learn about the disease, its treatment, and the legal and financial issues. Consult Alzheimer’s disease web sites (see below), books, health care professionals, and other caregivers. Do not try to muddle through on your own. Both parent and caregiver will suffer the consequences!

Dementia causes memory impairment, but in the early stages of this illness, the forgetfulness noted by both your parent and the family might be innocuous. Many children attempt to correct the mistakes the parent makes in the hope that it improves the memory of the event. Some become irritated by the repeated questions asked. It is useful and important to appreciate that the reality experienced by those with memory loss is not your reality. They may insist a long gone relative is still alive or that someone is stealing their money. By persistently insisting that they are wrong in their perception can cause your parent to suffer from a loss of confidence and experience distress and possibly depression.

One solution is to distract your loved one with another interesting activity or to bring them to another room where there are no triggering cues. Try not to confront or correct, but to diplomatically distract to avoid creating a drama.

Later in the illness, when your loved one becomes increasingly dependent on you, there is a tendency to assume control over all activities. Prompting your memory impaired parent to change his or her clothing, or to bathe or eat may be necessary. They may react to your attempts to help in a way that you might find inappropriate, or irritating. When your parent behaves erratically, look for possible triggers as listed below:

- Physical discomfort: They may have an infection, a headache, lack of sleep, a toothache, or even simple constipation that could affect even your behavior!

- Activity related: In the past, your parent might have been the queen of the kitchen, and because of her worsening memory, you fear that she might harm herself and bar her from accessing the kitchen. You might find that your loved one becomes increasingly agitated as mealtime approaches, and this could be her intrinsic desire to prepare food for the family.

Distracting her with another meaningful activity or involving her in the kitchen whilst monitoring her activity might reduce her feeling of helplessness. In a similar situation, cessation of driving may be very disturbing and has to be handled with care and tact.

- Intrinsic personality: Some parents have in the past, docile temperaments, and some may have fiery tempers. One should anticipate amplification of their past behavior if they experience distress.

- Depression: A common association, which may precede or follow the onset of memory loss and can present with agitated behavior or restlessness.

When you feel overwhelmed, it is easy to get locked into your habits, to keep doing things the same way even if they are not working. Try to keep some perspective and think of creative ways to get help. At the very least, reach out to some of the local and national organizations for Alzheimer’s caregiver support (see below)

Family Issues

Explain the situation to your children. The chances are that your children have already noticed that something is amiss. So explain that it is a disease that is making grandpa or grandma behave strangely – and that it is not contagious.

Involve your children. Young children can provide entertainment; older children can help out by doing more chores around the house. Your children might not like to do this, but sometimes circumstances give you little choice. And if the household functions better as a result of their help, everybody benefits.

Develop a plan of care. If possible, bring the family together for a meeting. Decide with the older person what the primary needs are, who can provide assistance and what community resources would help. Summarize your agreement in writing. Keep in mind that family difficulties are common. Involve your family and siblings in the decision making process as early as possible.

Discuss legal and financial issues. These topics may be difficult to talk about, but they help ensure that the older person maintains decision-making authority even when incapacitated. Pre-planning will also lessen family disagreements and protect family resources. Do not delay addressing this item.

Sometimes, exclude grandma. A person with Alzheimer’s tends to become the center of attention, which can leave children – and other adults – feeling overlooked. So although you might feel guilty about it, you need time away. A weekly dinner out with just your spouse and children to reconnect as a family might be all you need to recharge your batteries.

Taking Care of Yourself

If you want to keep taking care of your family and your loved one, you need to keep physically and mentally strong. You need to give yourself breaks. If you have siblings, make a deal where they take over for the weekend, or even for a longer period.

Getting other people to help out does not only help you, it gives you the opportunity to interact with your friends, go shopping, or just to get your hair done. So stay fit. Eat in moderation. Activity is the key for physical and mental health. Try to squeeze in 20-minute walks or have a home exercise programme.

Long-Distance Caregivers

If your mother lives in Penang and you are in Hong Kong or even Johor Baru, how do you help take care of her?

Get Organized: Take care of necessary paperwork. Find all legal, financial, and insurance documents, including birth and marriage certificates, wills, and power of attorney. Identify bank accounts, titles, sources of income and obligations, and all relevant insurance papers.

Review these documents for accuracy and update them if necessary. Store documents in a secure place such as a safe-deposit box or a fireproof box.

Identify your informal network. Ask for help from people in the older person’s community, such as relatives, neighbours, long-time family friends and members of religious, civic, and social organizations. Ask them to call you if they spot a problem.

Investigate travel alternatives. Be prepared to “care commute” for any emergencies. Investigate travel options in advance.

Finally, maintain good health, make time for yourself, set limits, and allow others to help. Remember that the person with memory impairment has a different reality and it is easier to be non-confrontational and develop the patience of an angel.

(Source: The Sunday Star, August 9, 2009 - http://thestar.com.my/health)