Transcript: Chat With Peter V. Rabins on Caring For Loved Ones With Alzheimer's or Dementia

Missed the May 16 conversation? Read the transcript

Comment from Linda: Is there a point at which Aricept no longer helps and should be stopped?

Peter Rabins: A recent study demonstrates that some people can benefit from Aricept (and presumably Exelon and Razadine) in the third or severe stage of Alzheimer's. However, there are some people who do not have a benefit even at the beginning of the disease.

Comment from Christine: I don't even know where to begin in getting necessary care for my 72-year-old father who has had dementia for the past 4 years. Neurologist is saying now that it "may likely be becoming Alzheimer’s" and we need to develop a plan for serving "his best interests," which I understand to mean assisted care, psych services, etc. None of which Dad can understand and of course, reasoning with him is beyond us now. Where do I even start????

Peter Rabins: Think about what he would have wanted if he knew in advance that he would develop dementia.

If he has an advance directive, review it.

Many people with Alzheimer's disease can express some wishes even though they are very forgetful.

Comment from Guest: How are the stages determined?

Peter Rabins: There are several different conceptualizations.

I favor one that identifies three stages: in the first stage, difficulty learning new information is the predominant problem.

In the second stage, people develop difficulties with language and communication, doing every day activities such as using a knife or tooth brush, and in accurately seeing the world, for example not recognizing their own home.

In the third stage, people develop physical problems and become unsteady and fall, lose bladder and bowel control, have trouble swallowing, and may lose the ability to speak.

Comment from Guest: Are there any specific tips that you could give regarding getting through a typical day?

Peter Rabins: Having a scheduled day often helps the person with dementia and therefore also helps the caregiver.

For example, give medications at the same time every day, read the newspaper with the person at 11 a.m. and then have lunch. Go for a walk or a drive in the early afternoon.

Comment from Bobbi G: Makes me feel guilt when I have to sneak out of the facility. Any suggestions on dealing with this situation and the guilt from sneaking out?

Peter Rabins: Guilt is very common in caregivers of people with dementia. I speculate that many situations such as the one you describe make people feel guilty.

Unfortunately, it is often necessary to "sneak out" or even tell a person that their mother will be coming to pick them up later when, in fact, their mother has been dead for many years.

I think it is helpful to discuss this with other caregivers because you usually find that almost everyone in this situation finds themselves doing similar things.

Comment from Guest: What is an example of sundowning behavior?

Peter Rabins: Sundowning is a term used to refer to the fact that many people become more active or restless in the late afternoon or evening.

Other people, though, are more restless in the morning. The time of day is less important than trying to figure out what is occurring in the environment or in the person that is leading to restlessness.

For example, are they becoming tired or fatigued? Is the environment more noisy or less stimulating? Is the caregiver so busy that he pays less attention to the person?

Comment from Guest: I have recently placed my husband in an Adult Care Home. He receives excellent care but when I visit he always tells me to take him home. I tell him this is his home. He says he doesn't know what our home looks like; where it is; how far it is.

Peter Rabins: This is an example of the stage two symptom I described earlier, in which a person loses the ability to recognize familiar places.

It's usually best to try to change the subject, to reassure the person that she is safe where she is, to distract them by asking them to help do something else such as folding clothes or to ask them their favorite memory about the house they grew up in.

Next page: How to deal with angry or threatening behaviors. »

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Video Extra

MANAGING STRESS: Long-term care expert Elinor Ginzler discusses strategies for identifying and managing stress as a caregiver.

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