David Shenk is the author of "The Forgetting: Alzheimer's, Portrait of an Epidemic."
You submitted your questions about Alzheimer's disease. Read Shenk's answers below:
Question: I still don't understand the difference between dementia and Alzheimer's. Also, I have read that you should not argue with an Alzheimer's patient, but when my mother is confused, I feel that it sometimes seems to help when I "correct" her version of reality. Can I do anything to keep her grounded in reality?
-- Judy, Gadsden, AL
Shenk: Very important question. "Dementia" and "senile dementia" are generic terms that describe a set of symptoms - memory loss, confusion, aphasia, and so on. Every case of dementia is caused by one or another disease. Alzheimer's is one of those diseases, and is by far the most common cause of dementia. There are other diseases that cause dementia - multi-infarct dementia, fronto-temporal dementia, and others. But the important point here is that it is no longer acceptable for a doctor to leave a diagnosis at "just dementia." It's important to find a doctor who will work to find out which disease is causing the dementia.
This has to be handled on a case-by-case basis, but every caregiver I've spoken with about this has found that the easiest and most comforting thing to do is to let the patient be comfortable in his/her own reality. As you've suggested, you're never going to bring your mom back to your reality. She has a progressive brain disease and is now living through her own very different reality. If correcting her gently makes her happy, that might make sense some of the time. But generally, you want to be showing an understanding of what they are saying, and gently steering them to a conversation that they find comforting.
Question: Is there such a disease as pre-Alzheimer's? What medicines, nutritional changes or aggressive clinical trials are available to help patients keep their memory and ability to function longer? Does loneliness or depression precipitate dementia or Alzheimer's?
-- Alicia, Clayton, NC
Shenk: There are a few medications that help some people to stabilize their symptoms, or perhaps improve a little, for as long as a year or two. These drugs do not actually stop the disease. You should speak to your doctor about which drugs might be appropriate for your loved one. [Disclosure: A number of pharmaceutical companies have funded conferences at which I have paid to speak.]
Depression does not cause Alzheimer's or any other disease related to senile dementia. It is possible, even common, for people to have depression and Alzheimer's at the same time, and the depression can and should be treated. It's also very common for caregivers to develop depression - and it's important to watch for that and to treat it aggressively.
Question: How do I deal with a family member who accuses me of lying and stealing from her?
-- Karen, Sherwood, OR
Shenk: First thing is to realize that this phase will pass. Alzheimer's is a progressive disease with many different stages. As bad as it gets in any one phase, it won't stay that way. Next, please be mindful that this is not your loved one talking - it's the disease. The Alzheimer's plaques and tangles have gotten to the parts of the brain that controls emotion and reasoning, and have created a clinical paranoia. Alzheimer's often takes gentle people and makes them temporarily violent. It takes enlightened people and turns them into racists. At that level of brain destruction, literally anything is possible.
Try not to be personally offended. Try to distract her, pacify her, do anything that gets her past that paranoid moment. At this stage in the disease, she won't remember from one moment to the next. So if you can get past this moment and put her attention on something else, you'll be past it - at least for a while.
Don't waste your time or energy trying to convince your loved one is sick with a disease. She won't understand that, and it won't help.
Question: Do you have any suggestions for caregivers who want to help ease an Alzheimer's patient who has significant anxiety as a result of his awareness of his own disease?
--Sally, Ann Arbor, MI
Shenk: You have to follow your instincts. If someone really wants to know, then it's often appropriate to share the information. But it's rarely appropriate to force the diagnosis on someone who doesn't really want to know. Depending on how far along they are, it's quite possible they will forget the news moments after you present it.
Question: Is it better to care for an Alzheimer's patient at home or is it more feasible for them to be in professional care?
--Monica, Taylorsville, KY
Shenk: Almost every Alzheimer's patient eventually needs professional care, either at home or in a facility. This nags at many caregivers, who often promise their loved one that they will never put them in a nursing home. It's important for caregivers to understand that this disease is much more powerful than they are. Everyone feels guilty for seeking outside assistance, but it simply becomes necessary.
Question: What rights are there to protect the elderly with Alzheimer's disease from people who potentially will manipulate them?
Ann, Nashville, TN
Shenk: Alzheimer's is a progressive disease. It never goes into remission. It always advances to a stage of more and more confusion. At a certain point, every patient is vulnerable to manipulation, abuse, theft, etc. The only way to protect your loved one is to personally make sure that they are protected - you or someone you trust should gain control of their finances and other important life matters.
I would urge all caregivers to work to get their loved ones to stop driving as soon as possible. It's simply not safe - for them or for others. There are all sorts of strategies for this. Unfortunately, they frequently involve deception. But in the world of Alzheimer's, deception is often required for safety and comfort.
If you feel your loved one is being unfairly manipulated by someone who you do not trust, find a lawyer. Your local Alzheimer's Association chapter might also be helpful in helping you through this situation.
Question: Can someone with Alzheimer's ever improve? What is usually the cause of death?
--Linda, Cornelius, NC
Shenk: Alzheimer's is a progressive and ultimately fatal disease. On average, it takes 8-10 years to progress from initial diagnosis to death. It can take half that amount of time, or more than twice that amount of time. I've known of patients to have it for 20-25 years.
Very often, elderly people with Alzheimer's disease will die of a different, unrelated condition before they get to the end stages. Everyone has to die of something, and it's very common for someone to have Alzheimer's for a few years, then die quickly from heart disease or cancer. Alzheimer's doesn't bring on any of these diseases, but it also doesn't protect anyone from them.