If you’ve been diagnosed with Alzheimer’s disease, you need to make certain decisions now to be ready for the time when you no longer can. You’ll want to think about the type and location of care you will receive. You’ll also need to make medical and financial decisions. It helps to get help right away.
Where can you get help?
- A family member or friend: You’re going to need someone’s help in gathering the following information and advice. This person should probably be your primary caregiver.
- The Alzheimer’s Association: This national organization can tell you about the services in your area. Get the name and number of your chapter representative and call for information on local support groups, programs and how to get help for planning for the future.
- The doctor and Alzheimer’s specialist: Ask about the symptoms and behavioral changes to expect and what treatments are available, including clinical trials. Be sure you or your caregiver keeps this communication ongoing, as your condition and treatment constantly change.
- A lawyer: You can get referrals for lawyers knowledgeable about the affairs of the elderly from the Alzheimer’s Association and the American Association of Retired People (AARP). You’ll need a lawyer for putting together legal and financial documents such as power of attorney and a living will, finding out about issues like legal capacity and guardianship and understanding insurance issues concerning costs of long-term care and Medicare and insurance coverage.
- A financial adviser: It’s important to know the financial consequences of a chronic, debilitating disease and to find out how to get information on financial and insurance options as well as protecting your assets. Again, the Alzheimer’s Association and the AARP can help you find people to help with these concerns.
- A local care services: While you may not need a caregiver yet, you will in the future. To help you learn about care options and to decide whether in-home care or a care facility is best for you, speak to a case manager or social worker from the Alzheimer’s Association or your state or local Agency on Aging. They can tell you about care options in your community, the pros and cons of each one, their costs and if financial assistance is available.
What do you need to know?
Being diagnosed with Alzheimer’s is frightening and overwhelming. But as the Alzheimer’s Association points out, “having information about the disease can help you cope.” It’s important to understand that:
- The disease will bring on such symptoms as difficulty in thinking, remembering, learning new things and making decisions, symptoms that grow worse with time.
- The disease causes behavioral changes that you may or may not be aware of.
- These changes in abilities and behavior are because of the disease. They’re not your fault.
- Alzheimer’s affects each person differently; so the timing and pattern of your symptoms may differ from the standard stages of the disease.
- As you need your family and friends more and more for help and support, your relationships with them will change.
- All these changes may make you feel angry, sad, confused, depressed, anxious, embarrassed, frustrated, guilty and lonely. These feelings are to be expected, but there are things you can do to help yourself.
- Realize that you’re not alone. Not only do others suffer from Alzheimer’s, but many people understand what you’re going through and want to help you.
How can you help yourself?
- Join a support group. Talk to others with Alzheimer’s, and learn from them ways to cope with the turmoil of your emotions and changing symptoms.
- Spend time with family and friends. This helps prevent feelings of loneliness and sadness.
- Do things you enjoy. Identify activities and chores that you like doing and can do on your own as much as possible so that you can feel useful and productive.
- Take your time. If you’re having trouble keeping up with a conversation, slow down and ask the others to speak more slowly, too. If you’re doing a chore, don’t rush.
- Accept help when you need it. If you get lost, ask someone for help. Or, better yet, take someone with you when you go out. Arrange for others to help with tasks you can’t do yourself.
- Keep track of time. Mark days off on a large calendar, and have someone remind you of appointments and when to take your medication.
- Maintain a daily routine and keep things simple. This reduces distractions and lets you focus on things that matter.
Self Care and Caregivers
You and the people who take care of you should consider the following:
- It is most helpful to stick to a regular daily routine.
- Keep familiar objects in view.
- Keep track of how much you can do independently, including the ability to eat and drink enough every day.
- Get regular exercise and recreation, as tolerated.
- Use memory aids such as calendars, programmed clocks and lists of daily routines.
- Consider monitoring for personal safety and injury prevention due to wandering off or improper use of appliances. Maintain independence as long as possible.
- How to get emotional support.
- Making sure the people who take care of you are taking care of themselves. Caregiver “burnout” is a major factor in breakdown of family dynamics when living with a parent or other loved one with dementia. Don’t rely on family members for everything. There are professional services available, such as visiting nurses.
In 1990, Alzheimer’s patients and their families had few options. A decade of research has made more treatment and care options available, with a promise of more to come.
Today’s treatments are designed to relieve symptoms. One group of drugs is directed toward improving the patient’s cognitive symptoms, thinking, understanding and remembering. A second group of drugs is used to treat the behavioral problems associated with Alzheimer’s, such as aggressiveness, agitation, depression and anxiety.
Treating cognitive symptoms
The U.S. Food and Drug Administration (FDA) approved three drugs that improve cognitive functions in some patients in the early stages of the disease. The next generation of these drugs promises to do more. Researchers are investigating dozens of compounds that may delay onset of the disease, dramatically slow its progression or even reverse its course by enhancing communication between nerve cells, protecting nerve cells from damage or repairing already damaged brain cells. Says Zaven Khachaturian, Ph.D., director of the Alzheimer’s Association’s Ronald and Nancy Reagan Research Institute: “If we can push back the onset of Alzheimer’s for just five years, we can reduce by 50 percent the number of people who get the disease, add years of independent functioning to people’s lives and reduce the amount of care they need.”
Nerve cells communicate by means of chemical messengers called neurotransmitters. The neurotransmitter acetylcholine is responsible for transmitting the signals involved in memory and cognition. When researchers found that the level of acetylcholine is extremely low in people with Alzheimer’s, they figured that boosting its levels might ease symptoms. One way to increase the level of a substance in the body is to decrease its breakdown. The four FDA-approved drugs work by inhibiting the production of the enzyme cholinesterase that breaks down acetylcholine. They are called cholinesterase inhibitors and listed as below:
- Tacrine (Cognex®).
- Donepezil (Aricept®).
- Rivastigmine tartrate (Exelon®).
- Galantamine hydrobromide (Reminyl®).
- Memantine HCI (Namenda®).
In recent experiments, several substances have shown promise in preventing Alzheimer’s, delaying its onset or reducing its severity. They are:
- NSAIDs: Regular use of NSAIDs (nonsteroidal anti-inflammatory drugs such as ibuprofen, naproxen and indomethacin) decreases the risk of Alzheimer’s and slows mental decline. These drugs probably work by reducing the amount of inflammation involved in the production of nerve tangles and plaques. Their main drawback as preventive drugs is that they can cause gastrointestinal problems, especially in the elderly. New forms of these drugs, such as Celebrex® and Vioxx® that were developed to treat arthritis, cause fewer gastrointestinal side effects. They and several NSAIDs under development that specifically target the brain may prove useful in preventing and/or treating Alzheimer’s.
- Estrogen: Some studies have linked the female hormone estrogen to improved memory and possible delay of Alzheimer’s in women. Estrogen may boost levels of acetylcholine and blocks the formation of senile plaques. It also increases blood flow to the brain and helps maintain the hippocampus, a part of the brain responsible for establishing memories. However, combination hormone replacement therapy that includes progestin and estrogen may actually double the risk of Alzheimer’s and related dementias for women taking the treatment after age 65. The study appeared in the May 28, 2003 issue of The Journal of the American Medical Association. A second report in the same issue showed women taking this drug had a slightly increased risk of significant cognitive decline.
- Antioxidant nutrients: Vitamins such as A, C and E may prevent damage from free radicals, which are highly chemically reactive oxygen molecules can inflict damage on body tissues. Scientists believe that free radicals may cause heart disease and cancer and may contribute to Alzheimer’s by creating conditions that favor the formation of senile plaques. A few studies have investigated the effect of antioxidants on Alzheimer’s disease. Vitamin E at doses of 400 IU to 800 IU per day may prevent or slow the development of the disease. In addition, the antioxidant drug selegiline has been shown to improve memory in people with mild-to-moderate Alzheimer’s and to enhance the benefits of tacrine. Both selegiline and high doses of vitamin E were shown to slow the progression of the disease in patients with moderately severe Alzheimer’s.
- Ginkgo biloba: This herb may improve recall and mental acuity in normal people. It’s currently being tested in Alzheimer’s patients.
Finally, a variety of alternative therapies have been used tried to improve cognition. Caregivers report giving their Alzheimer’s patients vitamins (84 percent), health foods (22 percent), herbal medicines (11 percent) and so-called “smart pills” (9 percent). Only one-third who used such approaches said they helped, and then only a little. That’s the same response rate that a placebo, or sugar pill, would be expected to get.
Treating behavioral symptoms
Some people with Alzheimer’s have depression or anxiety or display changes in behavior. Since behavioral symptoms often have an underlying cause such as physical discomfort or drug side effects that the patient cannot explain to the caregiver, any change in behavior should first be discussed with the patient’s doctor. Once it’s determined that treatment is required, there are two options.
- Non-drug treatments: These should be the first option to avoid taking unnecessary drugs. A good place to begin is with family education and counseling to learn about the behaviors of patients and how to cope with them. Another treatment to try is changing the patient’s environment; keeping the noise level low prevents confusion for the patient. Also helpful is keeping familiar items around to reassure the patient. Helping the patient organize and plan activities during the day lets the patient feels useful and may relieve depression, agitation and wandering.
- Treatment with anti-anxiety, antidepressant and antipsychotic drugs: An antipsychotic like Risperdal® (risperidone) may be needed to relieve anxiety, agitation, aggression, paranoia, delusions and depression associated with Alzheimer’s.