Q: What is the caregiver's role during the early stages of an illness like Alzheimer's?

A: In the early stages of an illness like Alzheimer's dementia, patients suffer emotionally as they become increasingly aware of their deficits. Family members may be less aware of the patient's daily difficulties. Patients at this stage may develop depression and may fear progression of the condition.  Family members need to be supportive during this difficult time, and acknowledge that they understand the fears of the patient.

Q: What is the caregiver's role during the later stages of a dementia?

As the illness progresses the burden of the disease shifts to the caregiver, who must now care for their loved one at all times, without any weekends or holidays off. Caregivers, who are frequently women, suffer from high rates of depression. Friends may stop socializing. Not uncommonly, family members who visit on occasion, and who are unaware of the patient’s level of deficit, may feel the caregiver is ‘doing too much’, being 'unreasonably harsh' or that ‘there’s nothing wrong with Dad.’ This accentuates the isolation that many caregivers feel and places them on the defensive. 

Q: Is it depression? "He sits in front of the television all day and doesn't seem to be interested in anything any more."

A: There are several reasons for this lack of initiative. If due to depression, it needs to be vigorously addressed, as treatment will lead to improvement. Other causes include symptoms associated with the disease process itself, such as apathy and abulia.

Q: "I care for my father,  manage his finances and take him to his appointments.  He has become suspicious of me and thinks I am stealing from him. "

A: Imagine misplacing your keys or your glasses or the paper several times a day, every day of the week, all the time.  To a person, the loss of one's mind is terrifying. In trying to make sense of the inexplicable disappearance and reappearance of objects, patients often blame someone else, usually their primary caregiver. Hence accusations and paranoia are not uncommon. There are medications available that will help treat some of these symptoms.

Q: "My husband has trouble using a toothbrush. He cannot figure out how to put on his shirt. What may be going on?"

A: Your husband may be suffering from an apraxia. He has developed a difficulty with a previously learned task.  Because apraxia may be intermittent, caregivers may on occasion feel their loved one is doing so "on purpose" because "she knows it aggravates me!" Understanding and managing apraxia is important for both patients and caregivers.

Q: "My wife gets anxious every time I leave she loses sight of me. She follows me from room to room. If I leave the house, she gets very upset."

A: Some patients are beset with anxieties and need the comfort of a familiar, loved person at all times. However, these anxieties may be significantly alleviated by medication.

Q: "Every time my mom gets admitted to a hospital she gets very agitated. They have to sedate her. How can I help?"

A: Place familiar objects in the hospital room. Place a large printed chart with the name of the hospital, the names of her doctors and nurses, the date and the floor and room she is in. Make sure the chart is easily visible at most times. Put down times when meals are served. When you visit with her, let her know what's happening outside, both in terms of current events as well as more mundane matters like whether it's day or night. Make sure she has access to her glasses and her hearing aids.  Familiar music and food may also offer comfort.

Q: Are support groups like the ones offered by the Alzheimer's Association helpful?

A: Support groups are invaluable for caregivers. The Association offers an superb network of services for families. At support groups, families often network about a number of matters as varied as good day care programs, techniques for calming agitation, and coping with the isolation and sense of loss that is often the lot of caregivers.

These and other questions are also addressed in our well-reviewed book, What your Doctor may not tell you about Alzheimer's Disease (Time Warner Books). You may also post your query on our discussion group if you have questions concerning a loved one.