General advice for caregivers

Caregivers are those who take care of someone - such as a parent, spouse, sibling or child - with a chronic illness or disease. Caregivers often provide emotional as well as physical support to the chronically ill and the job can be very taxing. Caregiver stress levels can run very high and there is a real danger of the caregiver also becoming ill if they do not take care of themselves. The tips below may help caregivers to balance their critically important caregiving role with their own health and well being.

Take care of your own health

It is critical to remember to take care of your own health as well as the health of the person you are caring for. Caregivers are at greater risk for contracting infectious disease than the general public. This is probably due both to the stress that being a caregiver entails, which can reduce the effectiveness of the immune system, and to a lack of time in a busy caregiver’s life to devote to one’s own health.

If someone is dependent on you for regular care, when you get sick both of you will suffer. Keeping up with your vaccinations and having yearly physical examinations and other appropriate medical surveillance (e.g. mammograms, prostate exams) are two things you can do to keep yourself healthy.

Depression is twice as common among caregivers as non-caregivers. While it is normal to feel down sometimes when taking care of a sick relative, it is important to pay special attention to your mood and seek out medical advice if you start to have symptoms of clinical depression. For example, if you find you are losing interest in the things you normally enjoy the most, or getting angry for no reason, or if you are avoiding friends and loved ones, you may want to see a doctor to be screened for depression.

Take time for yourself

Caregivers often have the responsibility of employment in addition to the large amounts of time spent caring for their patients. You should try to take some time for yourself every day. That doesn’t mean you need to watch a three hour movie; sometimes a hot bath is enough, as long as you have some respite from the day where the only person you are focused on is you. This can do wonders for your emotional well being.

Get some exercise

Physical activity often gets neglected when caregiving. Finding time to exercise, even for just twenty minutes a day, can help you maintain your physical health.

Eat healthy

When people are busy they tend to eat more fast food and junk food, or to skip meals entirely. However, even a little effort can improve your eating habits dramatically. Buy healthy breakfast foods that you can eat on the go. Get fruits and vegetables to eat as snacks - they are affordable and portable. Try to make dinner at home. If you don’t have time to make dinner, get takeout or delivery from a restaurant that has healthy menu options.

Learn how to manage stress

Learning how to manage stress can be difficult, but it can make all the difference for your own health. Stay in touch with your friends and family members. If you need to, ask them for help giving care. Asking for help doesn’t make you a failure; it just means you know your own limits.

Find caregiver resources in your area

Finding support is critical to sustaining yourself as a caregiver. Sharing your experiences with others in a similar situation, or hearing how other people deal with the same challenges that you face can help you gain perspective. See “Core Resources” for links to some caregiver organizations.

Alzheimer’s disease-specific issues for caregivers

There may be no other disease for which it is more difficult to be a caregiver than Alzheimer’s disease. It is hard to watch as a loved one, often a parent or a spouse, gradually changes into a person you no longer recognize and who no longer recognizes you. In addition, as the disease progresses, the behavioral symptoms can become very difficult to deal with. It is incredibly important for someone who is acting as a caregiver for an Alzheimer’s disease patient to seek help and support from several sources. You just can’t do a job this tough on your own.

One of the biggest struggles caregivers face is dealing with the behavioral problems of their loved one. Having a plan for getting through the day can help caregivers cope. Many caregivers have found it helpful to use specific strategies for dealing with difficult behaviors and stressful situations. Sharing your experiences with other Alzheimer’s disease caregivers and listening to others tell about their experiences can help you learn new ways to deal with the daily challenges. There are many organizations that provide support for caregivers of people with Alzheimer’s disease where you can find others to talk to about experiences and strategies for caregiving.

Basic activities of daily living often become difficult to manage for both the Alzheimer’s patient and the caregiver. Everyone with Alzheimer’s disease is unique and responds differently to treatment so not every strategy that works for one person will work for others. Through trial and error you can learn what works best for you and your loved one.

Tracking Symptoms

One of the most helpful things you can do as a caregiver is to keep a journal of the patient’s symptoms and experiences. This will help you notice changes in their memory and behavior and can also help you report to the doctor about them. You can also write down tips about caregiving strategies that worked for you and those that didn’t. In general, you should note any changes in the patient’s memory, personality, behavior, and daily living skills as well as any medications or supplements that are taken.

Alzheimer’s disease issues

There are many issues that a caregiver of an Alzheimer’s disease patient will have to deal with. An exhaustive discussion of all these issues is beyond the scope of this article. What follows is a brief description of some of the issues to expect as an Alzheimer’s disease caregiver with some advice based on the National Institute on Aging Caregiver Guide ([http://www.nia.nih.gov/Alzheimers/Publications/caregiverguide][11] ). For links to several Alzheimer’s disease caregiver resources with much more specific and in-depth information about caring for an Alzheimer’s disease patient, see “Core Resources for Alzheimer’s Disease.”

Communication

It can be very difficult sometimes to communicate with an Alzheimer’s patient, especially in the middle and late stages of the disease. In general, try to keep your voice calm and gentle, use simple words, and enunciate clearly; however, avoid talking to the patient like they are a baby. Be patient with their responses and try to frame things in a positive light.

Bathing

Some Alzheimer’s patients may not like the experience of bathing. If this is the case, plan ahead to make the experience go more smoothly. Create a regular routine for bathing to help minimize frustrations. You can try a sponge bath if the patient does not want to get into the water.

Dressing

Many patients find dressing and undressing themselves confusing and difficult. Having a regular routine can help. For example, having the patient get dressed at the same time each day and using the same sequence of dress (shirt first, then pants, etc.) can make this easier. Consider giving the patient limited choices for outfits to wear so they don’t feel like you are choosing for them, but the options are not overwhelming. Choose clothing that is comfortable, easy to get on and off.

Eating

It can be difficult to maintain a healthy diet for an Alzheimer’s disease patient. Some may refuse to eat while others may want to eat constantly. Try to be patient and avoid rushing them. Aim for a quiet, calm mealtime atmosphere with limited noise and distractions (no TV). Maintain familiar mealtime routines, but be willing to adapt to the person’s changing needs. As with clothing, you can give the patient food choices, but limit the number of choices.

Activities

Finding activities that a person with Alzheimer’s disease can do may be a challenge. Familiar activities are usually a better bet than trying something new. Watch for signs of agitation or frustration with any activity. If these occur, gently help the patient or distract them and move on to something else.

Exercise

Exercise not only improves health, but it also can also provide an activity you both can share in. Build slowly, perhaps just starting with a short walk around the yard, for example, before progressing to a walk around the block. Be aware of any discomfort or signs of overexertion from the patient. Spend time outside when the weather permits. Regular exercise helps everyone sleep better.

Incontinence

As the disease progresses, many people with Alzheimer’s begin to experience incontinence, or the inability to control their bladder and/or bowels. Sometimes incontinence is due to physical illness, so be sure to discuss it with the person’s doctor. Have a routine for taking the person to the bathroom and stick to it as closely as possible. For example, take the person to the bathroom every 3 hours or so during the day. Don’t wait for the person to ask. Most importantly, be understanding when accidents occur.

Sleep Problems

Sleep problems are very common for people with Alzheimer’s disease. Many people become restless, agitated, and irritable around dinnertime, often referred to as “sundowning” syndrome. Getting the person to go to bed and stay there may require some advance planning. Follow the guidelines for good sleep habits (see “Treatments for sleeping problems”).

Hallucinations and delusions

As the disease progresses, a person with Alzheimer’s may experience hallucinations and delusions. Hallucinations are when the person sees or hears something that is not there. Delusions are false beliefs about things. Keep track of what the person is experiencing and discuss it with the doctor. Avoid arguing with the person about what he or she sees or hears. Instead, try to distract the person to another topic or activity.

Wandering

Some people with Alzheimer’s have a tendency to wander away from their home or their caregiver. Make sure that the person carries some kind of identification or wears a medical bracelet. Notify neighbors and local authorities in advance that the person has a tendency to wander. Keep doors locked and consider a deadbolt or an additional lock up high or down low on the door.

Visiting the doctor

It is important that a person with Alzheimer’s disease receives regular medical care. Try to schedule the appointment for the person’s best time of day or the time when the doctor’s office is least crowded. Don’t mention the appointment to the patient until shortly before it is time to go (to avoid causing anxiety). Bring along something for the person to eat or drink or an activity that he or she may enjoy. If possible, bring along another person to watch the patient while you converse with the doctor.

Visiting a person with Alzheimer’s disease

Visitors are important to people with Alzheimer’s, especially if the patient is institutionalized. The patient may not always remember who the visitors are, but just having human contact is important, even if it may not seem so. Consider bringing along some kind of activity that can engage the patient. Early in the visit, establish eye contact and call the person by his or her name. Remind the person who you are if he or she doesn’t recognize you and remember not to take it personally if he or she does not.

Medication management

Alzheimer’s disease patients may be prescribed one or more medications that may need to be taken several times each day. As a caregiver, you should have a system to make sure that the patient takes the medications when and how they are supposed to be taken. Especially for a disease that affects memory like Alzheimer’s disease, you cannot rely on the patient to remember to take their medications or to accurately report if they have taken them or not. You can use alarms or timers to remind the patient when to take each pill and pill dispensers to make sure they only take the dose that is prescribed. You may want to keep a medicine calendar and note every time the patient takes a dose, or have the patient do it themselves. You may also want to refill prescriptions before the patient runs out, so keep track of the supply of each medicine.

Make sure that the patient is not taking anything that is contraindicated by their condition or that may interact with their medication. Examples may include such things as herbal supplements and antihistamines.

Side effects

The side effects of Alzheimer’s disease medications can be unpleasant and may make the patient not want to take them. The side effects of the cholinesterase inhibitors are mostly gastrointestinal, including nausea, diarrhea, and vomiting. If these are a persistent problem, you may want to contact the doctor and ask about changing the specific medication or adjusting the dose. Tacrine may cause liver problems so make sure you tell the doctor right away if the patient develops a yellow tint to their skin which could indicate jaundice. The most common side effect of memantine is dizziness but it may also increase agitation and delusional behavior in some people. If these symptoms occur, contact the doctor right away.

Emotional support

Perhaps the most important role of a caregiver is providing emotional support. Simply being there with the patient helps them immensely, even if they do not recognize you anymore. Providing a positive attitude and encouragement can keep their mood up. In the early and middle stages of the disease, the patient can also attend support groups where they can share feelings and experiences and get emotional support from people in addition to their caregiver. There are also several resources specifically designed to help Alzheimer’s disease caregivers, including support groups and advocacy organizations. Taking advantage of these will make your life easier and can take some of the stress out of this “hardest of jobs.” In short, the more support that both you and the patient have, the better both of your lives will be.