It’s tough to think ahead when you are in the middle of a caregiver crisis. We constantly respond to the needs of our loved ones, yet seldom have time to learn better ways of solving problems. Today, however, there are pioneering research studies underway to help caregivers find new techniques for managing stress and reacting to common dementia care problems. To learn more about one study, I interviewed Jennifer Merrilees, RN, Ph.D., who is part of an international team now working with caregivers in the United States and Australia.
The U.S. section of the research group works out of the Memory and Aging Center of the University of California, San Francisco. But because the work is done over the Internet, caregivers from any part of the country can participate in their study. Sessions are carried out using online technology that is adaptable to any computer with a webcam. The only restriction for participants is that the dementia patient they care for must have a confirmed diagnosis of Frontal Temporal Degeneration (FTD). This includes people diagnosed with Corticobasal Syndrome, Pick’s Disease, and other variants of FTD. Click here to learn more about definitions of FTD.
This study is unique because it helps the caregiver learn to focus on skills that may help them reduce stress and find new meaning in their role. Facilitators from the study help caregivers identify — and focus on — small things that are valued and helpful in the course of a given day. The general theory underlying the study is that if caregivers focus on specific skills, it could help them cope better. The strategies employed in this study have already been used successfully by Judith Moskowitz in her work with people who have HIV. By offering new tools for managing problems, researchers hope to help reduce stresses that might affect caregivers of different ages and backgrounds.
After an interview with Judy Mastick, the project’s research coordinator, participating caregivers are assigned to one of two groups. One group is interviewed and receives support around life events, while the other gets instruction on the “skill-building” approach. Caregivers engage in one hour online sessions every week for five weeks. Sessions cover a different set of issues and techniques which caregivers can practice between meetings. The U.S. team is seeking 20 caregivers from across the country and would love to get a diverse group of caregivers of all ages.
Jennifer and Judy have extensive clinical experience in the dementia field. Jennifer earned her Ph.D. last year and has spent a dozen years providing dementia care. She also has a faculty position educating nursing students for the field. Judy is a Family Nurse Practitioner and has been involved in research studies for over 15 years. Both of them really understand the impact of dementia on patients and families. The Memory and Aging Center — where the study operates — is a national leader in training doctors, nurses, and pharmacists for positions in the dementia field. You can learn more about research at Memory and Aging Center by viewing their YouTube links.
If you’d like to participate in the study, do what I did: send an email to firstname.lastname@example.org. I did it because I want to learn better ways to take care of my mom — and myself. I also hope that my experience will benefit other caregivers who share my challenges today …or will face them in the future.
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!