While some families are eager to get their loved ones into drug trials, my family has avoided that path. We had some horrible experiences with current FDA approved treatments and don’t believe that the potential benefits of unproven drugs outweigh risks that are hard to predict. Nevertheless, we are optimistic that science will eventually reveal the mysteries of dementia and produce more reliable treatment options. In my interview with Dr. Roy Hamilton of Penn’s Memory Center, I asked him to comment on the range of approaches currently being explored.
Before we took my Mom to the Memory Center, our family pursued some alternative approaches to fighting her symptoms. These included chelations and nutritional supplements. I asked Dr. Hamilton to assess the value of these and other homeopathic regimens for fighting the disease. He said, “Allopathic doctors – those who are educated in the Western medical tradition — must remain a little skeptical about these approaches” mainly because there is insufficient data to show if they are truly effective. But he agrees that this lack of data also makes it hard to say that alternative treatments have no value. From his perspective, it’s important to remember that even if alternative regimens are helpful to a dementia patient, “You can still have side effects or interactions with other aspects of your treatment. You need to consider that when combining them with other items prescribed by your doctor.”
Among drugs on the market today, the most effective include two FDA approved medications which are acetylcholinesterase inhibitors. Drugs in this category include Aricept, Exelon, and Razadyne. Gastrointestinal problems are the most common side effect of these drugs. Another treatment uses an NMDA receptor antagonist. This drug affects the receptor in the brain that is associated with neuroplasticity. Mementine is one drug which has fewer side effects but may be less efficacious in combating symptoms. Dr. Hamilton says that the general outlook for medication development has not been encouraging. Scientists are now experimenting with monoclonal antibodies which attack the protein that causes Alzheimer’s disease. Although these drugs are now in the last phase of clinical trials, some serious clinical side effects have been observed. One new line of research focuses on using resveratrol, a polyphenyl antioxidant from red-wine. The research in this area is too new to assess its potential value and weary caregivers, please note: Red wine is not a medicine!
I asked Dr. Hamilton how caregivers should deal with their own health in light of the common fear that we may get the disease ourselves. His advice is, “Stay intellectually active, physically active, and socially active. Follow a healthy diet. This is a good prescription to help anyone maintain cognitive function.” He also suggests joining a support group. Being a caregiver can be a very isolating experience, which “can be borne more easily when shared.” He advises caregivers to take a structured break with time off from the family member. This practice is good for caregivers, but it also improves care when we returned to our loved one feeling refreshed. Respite care and adult daycare programs can help caregivers get needed breaks.
Dr. Hamilton doesn’t feel that it’s imperative for family members of dementia patients to get tested for genetic markers of the disease since most cases are “polygenetic” and you can’t predict your odds of getting the disease by determining that you have just one genetic marker. He also thinks that the cost of genetic testing would be unjustified since it’s not clear what you could do to modify your disease if you discovered that you were susceptible. Finally, Dr. Hamilton reminded me that since about 40% of all people over the age of 80 have the dementia profile – everybody should make a long-term care plan!
Since my mom got sick, my sister and I have done tons of research to find the most effective ways of caring for her. During the period when her symptoms emerged, we were all living in a city with expert physicians and State of the Art centers for treating memory loss. But after moving my mom to a rural place with a slower, more calming quality of life, I realized that there are many American towns and cities where access to expert care is very limited.
To provide all readers with more information on the latest developments in dementia treatment, I interviewed Dr. Roy Hamilton from Penn’s Memory Center in Philadelphia. Dr. Hamilton is a Harvard-trained physician who serves as Co-Director of Penn’s Laboratory for Cognition and Neural Stimulation. Our conversation yielded enough ideas to turn this into a two, or even three-part, info session for caregivers.
We started our talk by discussing how families should approach the issue of diagnosis. Since there are not many effective treatments for the disease, many people are willing to accept a probable diagnosis of Alzheimer’s when they may actually have a different form of dementia. I asked Dr. Hamilton whether it makes much difference to get a more precise diagnosis. His view is that “a better diagnosis has greater prognostic value. It gives caregivers a better idea of the course of the disease they will be dealing with.” He reminded me that, “Symptoms vary between the different types of dementia. Frontal Temporal Dementia patients typically have more behavioral symptoms than memory issues. Patients with Lewy’s bodies have more motor symptoms and hallucinations and caregivers need to be prepared for that.” Accurate diagnosis is also important because symptoms experienced by some patients are more treatable. Dr. Hamilton believes that, “It is better for caregivers to know if they are observing a condition that could be arrested or reversed. Examples of modifiable medical conditions that may contribute to cognitive decline include Vitamin B deficiency and hypothyroidism. These can be treated effectively and doing so could lessen their impact on the patient.”
Dementia can be a very puzzling disease, so I asked Dr. Hamilton how caregivers and family members can help physicians come up with the most accurate diagnosis and treatment plans. He advised family members to, “Be honest reporters of the family member’s symptoms. Try to be accurate even if it is painful to recognize what is happening. If the patient is present, it may be hard to talk about, but it’s important for the doctor to know. You may want to try to convey information to the doctor privately. You need to be able to describe to patient’s history of decline and be a good documentarian of treatment that has already occurred. The patient often will not remember the evaluation information that has already been collected.” He also mentioned that since the law limits access to medical records, some information may not be available to a patient’s new doctor. In that situation, “The physician may have to chase down bits and pieces of the story from other sources. Family members can help a lot by collecting results from previous doctor visits. The process of coming up with a complete diagnosis may require a long course of investigation. By providing complete information, families can help to shorten that process.”
Getting Mom treated at Penn’s Memory Center has given our family access to other services that have helped us improve her care. I asked Dr. Hamilton to describe some of the ways that the Memory Center adds value to the treatment of dementia patients. He pointed out that the center gives families access to a patient educator who is a trained social worker. She links families with information and resources that can help them adapt to the demands of the disease. The Center has a psychologist who offers counseling when families need help to deal with difficult situations. The psychologist also holds patient and caregiver training sessions. In addition, the Center has a multi-disciplinary team of physicians. Their broad spectrum of expertise enhances physicians’ ability to address patients’ complex problems. Specialized centers like Penn’s also qualify to participate in research studies and clinical trials so families can get speedy access to the latest treatments.
Because readers of this site are located all across the country, I asked Dr. Hamilton to mention a few other places where people might find treatment centers offering similar services. He suggested that families check out centers operating at the University of California at San Francisco, the Mayo Clinic, and at Harvard (Massachusetts General Hospital) and Washington University in St. Louis.