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March 6, 2002
Editor’s note: the following is an excerpt from the National Institutes of Health’s “Caregiver’s Guide.” NIH Publication No. 01-4013
Caring for a person with Alzheimer’s disease (AD) at home is a difficult task and can become overwhelming at times. Each day brings new challenges as the caregiver copes with changing levels of ability and new patterns of behavior. One of the biggest struggles caregivers face is dealing with the difficult behaviors of the person they are caring for. Many caregivers have found it helpful to use strategies for dealing with difficult behaviors and stressful situations. The following are some suggestions to consider when faced with difficult aspects of caring for a person with AD.
Incontinence
As the disease progresses, many people with AD begin to experience incontinence, or the inability to control their bladder and/or bowels. Incontinence can be upsetting to the person and difficult for the caregiver. 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.
• Watch for signs that the person may have to go to the bathroom, such as restlessness or pulling at clothes. Respond quickly.
• Be understanding when accidents occur. Stay calm and reassure the person if he or she is upset. Try to keep track of when accidents happen to help plan ways to avoid them.
• To help prevent nighttime accidents, limit certain types of fluids--such as those with caffeine--in the evening.
• If you are going to be out with the person, plan ahead. Know where restrooms are located, and have the person wear simple, easy-to-remove clothing. Take an extra set of clothing along in case of an accident.
Hallucinations and Delusions
As the disease progresses, a person with AD may experience hallucinations and/or delusions. Hallucinations are when the person sees, hears, smells, tastes, or feels something that is not there. Delusions are false beliefs that the person cannot be dissuaded of.
• Sometimes hallucinations and delusions are a sign of a physical illness. 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. Try to respond to the feelings he or she is expressing, and provide reassurance and comfort.
• Try to distract the person to another topic or activity. Sometimes moving to another room or going outside for a walk may help.
• Turn off the television set when violent or disturbing programs are on. The person with AD may not be able to distinguish television programming from reality.
• Make sure the person is safe and does not have access to anything he or she could use to harm anyone.
Choosing a Nursing Home
For many caregivers, there comes a point when they are no longer able to take care of their loved one at home. Choosing a residential care facility -- a nursing home or an assisted living facility -- is a big decision, and it can be hard to know where to start.
• It’s helpful to gather information about services and options before the need actually arises. This gives you time to explore fully all the possibilities before making a decision.
• Determine what facilities are in your area. Doctors, friends and relatives, hospital social workers, and religious organizations may be able to help you identify specific facilities.
• Make a list of questions you would like to ask the staff. Think about what is important to you, such as activity programs, transportation, or special units for people with AD.
• Contact the places that interest you and make an appointment to visit. Talk to the administration, nursing staff, and residents.
• Observe the way the facility runs and how residents are treated. You may want to drop by again unannounced to see if your impressions are the same.
• Find out what kinds of programs and services are offered for people with AD and their families. Ask about staff training in dementia care, and check to see what the policy is about family participation in planning patient care.
• Check on room availability, cost and method of payment, and participation in Medicare or Medicaid. You may want to place your name on a waiting list even if you are not ready to make an immediate decision about long-term care.
• Once you have made a decision, be sure you understand the terms of the contract and financial agreement. You may want to have a lawyer review the documents with you before signing.
• Moving is a big change for both the person with AD and the caregiver. A social worker may be able to help you plan for and adjust to the move. It is important to have support during this difficult transition.
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