By Charlene Martin-Lillie, M.A.
A diagnosis of Lewy Body Dementia (LBD) can be overwhelming. The experience of fear, sadness, worry, anger, and denial are normal reactions. Not knowing where to turn for resources and support can perpetuate these feelings and make us feel vulnerable and isolated. Although information today is more accessible than ever, navigating through this information can be daunting.
The Department of Neurology at Mayo Clinic designed a family seminar series to assist those affected by neurodegenerative disease and their families. The Lewy Body Dementia family seminar day is one of four offered throughout the year. Each one is geared towards a different neurodegenerative syndrome including Frontotemporal Dementia-Primary Progressive Aphasia, Corticobasal Degeneration -Progressive Supranuclear Palsy, and Posterior Cortical Atrophy. The all-day seminar emphasizes education, support and connection with others. Sessions focus on the basics of the disease, the latest in research and genetics, management using medications and non-medication strategies, and issues with communication and swallowing. A presentation entitled, “Understanding Behavioral Expressions,” is an important part of the day. Physical and occupational therapists share their knowledge of ways to improve quality of life, safety, and today’s best assistive devices and services.
Critical to the program are separate supportive sessions for both the person affected by DLB and for their care partner. Although there are many professionals who share their knowledge throughout the day (physicians, nurses, therapists and education specialists), we are not the experts of DLB. Persons with DLB and their families are truly the experts. You are the ones on the front line dealing with this disease and all that it brings. You are entrenched in a 24/7 learning experience and that knowledge can only be obtained from living your life. The group supportive sessions, in which families and patients are able to speak with one another is the most powerful part of any seminar. With support from people in similar situations, feelings of isolation dissipate. There is a connectedness with complete strangers that is difficult to explain. Knowledge shared by someone who has experienced a similar struggle is always more meaningful than reading information in a book or a hearing it from a professional. Many attendees have shared that their feelings of guilt, shame and worry have lessened, even if only for a little while.
For the last three years, Jim McEvoy, who was diagnosed with LBD in 2010, attended the LBD family seminar day along with his wife Peggy. The McEvoys say the first year was “overwhelming,” the second year was “even better” and the third year was “the best.” According to the McEvoys, it takes time for the information to “sink in” and they learn something new with each year they attend. Peggy, a self-proclaimed pragmatist, appreciates the advice and the tools given by Jack Thomas, a Speech/Language Therapist at Mayo Clinic. Jim states that although he typically is not fond of a small group setting, he has taken away some valuable tools from being in a group of others that also have a diagnosis of LBD. He believes that having physicians join the small group with other patients is a “nice addition” to the day’s activities. He comments, “You get a sense of where you are, as far as other people in the room. “ He continues by stating, “ It’s had an impact on my life. It gives me information to measure myself with. These things that affect me… I’m not alone.”
Regardless of what part of the day means the most to each individual, the day itself is about coming together and sharing. It’s about learning, coping, reflecting and finding courage and strength in yourself, your loved ones, and the others in the room.
If you are interested in attending a family seminar, contact:
Alzheimer’s Disease Research Center
41st Street Professional Building
Rochester, MN 55901