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Published on: April 3, 2014
by Dr. Beata Skudlarska for News Times:
Q: My husband was diagnosed with dementia almost six years ago. Initially, he was just a little more forgetful, but then he started having real problems with things he used to be very good at. Despite the diagnosis, he remains cheerful and never loses his temper. He is on memory medications and also takes pills for anxiety.
He is still able to go to the bathroom and dress himself. As a matter of fact, the last nine months have been very good for us — no emergency room visits, colds or urine infections. I know this will not last. My question is, what will happen to him? What should I be prepared for? How much longer will we enjoy this stable time? I want to be ready and not scared. We have been married over 55 years.
A: It is not easy to be the caregiver of a loved one with memory loss. Even the process of recognizing a memory problem in someone you care about can be lengthy and painful. It may go on for months, or even years. Couples who have been together for a long time seem to take a while to realize that the changes they’re noticing in a partner’s memory are not a normal part of aging.
Eventually, someone gets enough courage to bring the issue to a professional, usually a primary care doctor. Quite often that doctor can do some simple tests and help diagnose memory disease. Sometimes a specialist, such as a neurologist, geriatrician or psychiatrist, is asked to assist. This is especially the case if the patient is highly performing or if the pattern of the memory loss and behavior change is unusual.
Not every dementia is the same, and there are many other forms of dementia besides Alzheimer’s disease. For these “atypical” dementias, special tests are needed and not every doctor can diagnose them well. Still, in most cases, a diagnosis is eventually made. What happens next varies greatly depending on both doctor and patient. Some doctors will spend a substantial amount of time with the family and even recommend support groups and books. Others will take less than five minutes to break this very loaded news to the patient and his or her loved ones.
The other very important thing to understand is that no two dementia patients are alike. Some have an uncharacteristic amount of insight and want to fully participate in the treatment plan. This is quite rare. More often, patients have some understanding that their memory is bad, but tend to minimize the disease’s impact on their daily life. They tend to greatly overestimate their abilities, especially when it comes to more complex tasks, such as driving, managing and investing money or continuing one’s professional career.
Some patients have a lot of behavioral issues with anxiety, paranoia and, in some cases, can even have halluciantions or delusions. Other patients stay their usual selves with no changes whatsoever. The trajectory of the disease also varies from person to person. At times, it hits like a lightening bolt. This is common if the diagnosis was made late in the course of the illness.
In others cases, it can wax and wane, alternating good weeks — or even months — with horrible catastrophes. There are also patients who progress very, very slowly. They may take more than 10 years to get to the last stages of the dementia.
It is extremely important to establish a relationship with a trusted physician early. The same doctor should redo memory evaluations and tests at least twice a year, if not every three months. The family needs to prepare for visits by writing down questions and observations about the patient and his or her behavior. Ideally, the person who knows the patient best should accompany him or her for the visit. If this is not possible, then that person should give a detailed note to whoever can bring the loved one to the doctor. The family should leave the visit feeling that their questions were answered. If this is not the case, it needs to be made clear to the doctor that more information is needed. As a rule, most physicians genuinely want to help and will invest time and effort to work with the patients and their families and make them happy.
Very few patients die directly due to dementia. A wide range of events can influence how quickly dementia progresses. A major stroke or heart attack will make things much worse, but even a simple urine infection or flu can be very dangerous.
Being in the hospital is the worst. Patients with dementia rely heavily on the familiarity of their surroundings and the faces around them. All of this is lost during an acute hospital stay. Regaining mental and functional capacity after a hospital stay may take weeks, months or never happen.
Non-medical issues can also worsen dementia. Obviously, the loss or the illness of a loved one can be very damaging. Moving can affect can either good or bad, depending on the situation. Sometimes, moving to a more protected setting like an assisted living facility may be a salvation for both the patient and their caregiver. Other times, a move can make things much worse.
World events at times preoccupy dementia patients who may be unable to distance themselves from the information and cope appropriately.
It is very wise to be prepared. Two things come immediately to mind. First, what if the main caregiver gets ill? Wives, husbands, daughters, sons can all get stroke, cancer and heart attack too.
There needs to be a well thought-out emergency plan: Who will take care of the memory impaired and where the money will come from? It may be wise to see an attorney to talk about this. Then there are advanced directives. What if the person with memory loss gets really ill? What would they want and not want? Almost no one wants to be a burden, live permanently in the nursing home, and not be able to recognize loved ones or be in pain. Yet we do not discuss this in advance often enough. If the person is too far gone to have the discussion, who will make decisions for them? We all need to remember that each medical illness is likely to make the dementia patient deteriorate. At some point, staying home and never coming to the hospital may be the best choice.
For Jackie, planning ahead means anticipating medical illness for both her and her husband. Their family needs to be involved. This discussion may be unpleasant and painful but also much needed. Specific scenarios may need to be vetted. Usually, for those who are prepared horrible things, happen much, much less.
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