One of the main goals in caring for someone with Alzheimer's is to provide the support needed to live a full life. Helping your loved one maintain as much independence in daily life as possible is a very important part of this goal. Reducing or helping prevent disruptive behaviors is also key.
Helping maintain independence is extremely important in the mild-to-moderate stages of the disease. It enables people with the disease to feel better about themselves and their quality of life. The cardinal rule here is to avoid doing something the person can do alone. At first, this might mean letting your loved one feed or dress himself or herself. Later, you might have to help out more, such as holding the fork or putting an arm through the sleeve.
Disruptive behaviors - what can you expect?
The progress of Alzheimer's differs from person to person. Most caregivers understand that their loved one will undergo a decline in mental abilities. This may include loss of memory, reasoning, and the ability to make decisions. But what is often most unsettling is the troubling changes in behavior.
- Wandering: Many people with Alzheimer's walk or pace with what looks like no purpose at all. If left unattended, it's possible the person will wander off and get lost.
- Sleep disturbances: People with Alzheimer's often become disoriented at night. They may get up to use the bathroom but then forget to go back to bed. Some may get dressed, try to cook a meal, or leave the house.
- Hoarding and hiding: Some people try to save objects such as food and dirty clothes, hiding them in unusual locations.
- Repetition: The person may ask the same question over and over. They might also repeat a particular action, such as folding a towel or pacing in a circle.
- Clinging and following: People with Alzheimer's sometimes follow the caregiver from room to room. This may be because of separation anxiety or fear the caretaker won't return.
- Complaining, insulting, and lying about the caregiver: Some people complain incessantly about the care they receive either to their caregiver or to friends and family. They may also accuse caregivers of trying to harm them in some way.
- Sundowning: Agitation, restlessness, and disorientation become exaggerated as evening approaches. It isn't clear why this happens. But it may be that the person is tired, has difficulty seeing in the dark, or is disturbed by increased activity at dinnertime.
Handling these behaviors
Each behavior requires its own solution. For wandering, you may need to put special locks on outside doors or create a safe pacing area. Certainly, anyone who wanders should be registered with the Alzheimer's Association's Safe Return Program and wear clothing or jewelry that properly identifies them. Turning on lights or simplifying the routine at night may ease sundowning.
If you are caring for someone with Alzheimer's, these behaviors can be very frustrating. Try to detach from taking things personally and practice patience and self-control. Remember, your loved one isn't deliberately trying to bother you.
Some basic dos and don'ts
- Remember the disease causes the behavior and is not the person's fault.
- Remain calm.
- Be patient.
- Distract with another activity or object.
- Interact with the person.
- Be reassuring and loving.
- Speak in short simple sentences.
- Include the person in fun and family activities.
- Limit choices to two.
- Keep routines simple.
- Break activities into simple steps.
- Praise accomplishments.
- Focus on what the person can still do.
- Avoid situations that trigger bad behaviors.
- Maintain a sense of humor.
- Raise your voice or get angry.
- Act surprised or shocked.
- Be embarrassed.
- Do more for the person than he or she needs.
- Focus on what the person can no longer do.
Take care of yourself
Caregivers of people with Alzheimer's can become emotionally and physically overwhelmed. From the sheer physical labor of caring for someone who can't do ordinary tasks for themselves to the emotional toll of watching a loved one go downhill, your job is extremely stressful, draining, and exhausting. It's important to maintain a delicate balance between the needs of a patient and yourself.
- Ask for and accept help from family, friends, and community resources.
- Talk to other caregivers in a support group. Openly discuss your feelings and concerns and ask them for tips on caring, managing, and coping.
- Arrange ways to give yourself a daily break from care giving and a longer respite every few weeks.
Created on 06/28/1999
Updated on 07/08/2011
- Alzheimer's Society. Caring for a person with dementia.
- Helpguide. Dementia and Alzheimer's care.
- National Institutes of Health. Caring for someone with Alzheimer's.
- Alzheimer's Association. Caring for Alzheimer's.