If you have just been diagnosed with early Alzheimer's disease, you may feel angry, frightened, depressed, anxious, and worried about the future. Although the disease does get worse over time, some people are able to continue their usual activities for many years, even if at a reduced level or in different ways.
Common issues faced by people in the early stages of Alzheimer's disease and by their families include:
- Whether to continue driving. People in the very early stages of Alzheimer's disease can have their driving performance checked regularly to make sure they can drive safely. Family members can help find out about changes in the person's ability to drive by riding along when the person is driving. Talk to your loved one's doctor if you are concerned about his or her ability to drive safely.
- What kind of legal and financial planning to do. Soon after the diagnosis of Alzheimer's disease, consider writing a living will and assigning a durable power of attorney for health care. These documents will ensure that your wishes for medical care are documented.
The following tips may be helpful in the early stages of dementia:
- Tailor tasks to abilities. A task may take longer than it used to, but if you want to continue doing it, you should try. Make changes as needed. For example, if you no longer feel comfortable cooking, consider other tasks you are comfortable with, such as helping with shopping and meal planning or setting the table. Try making recipes that are easier.
- Make your home safe. Tack down rugs, put nonslip tape in the tub or use handrails, and put safety switches on stoves and appliances if you have trouble remembering to turn them off. Think about the risk of injury as well as the benefits of independence from continuing to cook.
- Make sure you eat a balanced diet. It's important to get plenty of whole grains, fruits, and vegetables every day. If you aren't hungry at mealtimes, plan snacks for midmorning and afternoon. Consider supplement drinks such as Boost, Ensure, or Sustacal if you are having trouble gaining weight.
- Some people with dementia have trouble sleeping. If you do, avoid napping during the day, get regular exercise (but not within several hours of bedtime), and try drinking a glass of warm milk or caffeine-free herbal tea before going to bed.
- Deal with depression. Many people with dementia have a problem with depression too. Talk with your family or friends about how you feel. And ask your doctor what you can do to help with depression. You may feel better if you spend more time with other people (for example, going to events at a senior center or volunteering). Or you may need to talk to a counselor or try medicines.
- Schedule activities and tasks for times of day when you are best able to handle them. It may be helpful to develop a routine that doesn't vary much from day to day. You may feel less frustrated or confused with a clear, simple daily schedule.
- Be creative in dealing with memory problems. Use labels, lists, sticky notes, and other helpful devices as reminders. Write daily activities on a calendar or daily planner, and keep it where you can refer to it often. Keep calendars and clocks in clear view.
- Before you go out alone, write down the destination, how to get there, and how to get back home, even if you have gone there many times before. Take someone along with you when possible.
- Remain active. Staying active and involved may slow the deterioration of mental abilities.
- Plan for the future. You should review legal and financial documents while your judgment is clear and you can make decisions.
Information for caregivers
Most people who have Alzheimer's disease are cared for at home by family members and friends. Taking care of someone with Alzheimer's disease can be physically and emotionally draining, but there are ways to make it easier. One of the keys to successful home care is educating yourself. You can do a lot to make the most of the person's remaining abilities, manage the problems that develop, and improve the quality of his or her life as well as your own. Also remember that caregiving can be a positive experience for you and the person you are caring for.
If you are taking care of someone with Alzheimer's, one of the goals is to keep the person as healthy and safe as possible. A safe environment, good nutrition, regular sleep habits, good hygiene, and prompt care of other medical problems are important to the person's overall well-being.
- Make your home safe by keeping rooms free from clutter, using locks on doors and cupboards, and installing handrails on the bathtub.
- Maintain good nutrition by making meal time a positive experience. You may need to serve finger foods that are easily held by the person with Alzheimer's. Set aside enough time for the person to eat, and limit choices. Too many choices may be confusing to the person.
- Manage sleep problems by discouraging napping during the day and offering warm milk before bedtime.
- Manage bladder and bowel control problems (incontinence) by encouraging the person to regularly use the bathroom and restricting liquids before bedtime.
Dealing with behavior problems and failing mental abilities often is the biggest challenge for caregivers. Strategies for dealing with these problems may not eliminate all the problems, but may make the problems easier to deal with.
- Make the most of remaining abilities. Let the person make decisions as long as he or she is able to.
- Help the person be at ease in his or her surroundings. Put labels on items and surround the person with familiar objects such as photographs.
- Understand behavior changes. Wandering or disruptive behaviors may occur. Try to remember the person's background and consider that the behaviors may be the person's way of trying to continue past activities or habits.
- Manage agitation. Keep distractions to a minimum and keep your voice quiet.
- Manage "sundowning." Sundowning is when symptoms of agitation and wandering become worse during the early evening hours. Try turning on lights as evening nears and give the person a single task to focus on.
- Manage wandering. Get the person an ID bracelet in case he or she does wander away. Lock outside doors to make it more difficult for the person to get out of the house without your knowing it.
- Consider the way you communicate. For example, don't argue with the person. Offer reassurance and try to focus the person's attention on something else. Use short, simple, familiar words and sentences.
It also is critical that you take good care of yourself. Finding and relying on sources of caregiver support can be extremely helpful. Try to find a support group in your area and an adult day care for some respite care. Remember to take care of your own health and not to shoulder all the responsibility of caring for your loved one who has Alzheimer's disease. Groups such as the Alzheimer's Association and the Dementia Advocacy and Support Network can provide not only educational materials but also information on support groups and services.
Nursing home placement
Taking care of a person with Alzheimer's disease at home is not always possible. Even when it is possible, it often becomes more difficult with time as the person develops new behaviors or medical problems that are hard to manage. The caregiver may develop medical problems of his or her own. Or the stress of caring for the person at home may become too overwhelming. There are many assisted living arrangements that you may consider, though many people with Alzheimer's will need full-time care at some point. Making the decision about nursing home placement is often very difficult because there are no guidelines that fit every situation. Every family has different needs, preferences, and situations to think about. For more information, see:
- Should I put my relative with Alzheimer's disease in a nursing home?