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.