For Lewy Body Dementia Awareness Month 2019, LBDA staff interviewed Pamela Corsentino, Director of Support Services at Lewy Body Dementia Association, for insights into her role as an LBD professional.
1. Provide background as to who you are and what you do at LBDA.
I'm the Director of Support Services for LBDA. I am also the administrator of the Facebook groups for care partners, volunteers and those living with Lewy. As part of my position, I conduct workshops and webinars on Lewy body dementia. Along with our Coordinator of Support Services, Wendy Smith, I oversee LBDA's support groups and train new facilitators. We are also responsible for the Lewy Line and coordinating the efforts of our Lewy Buddies in responding to calls and emails for LBD support.
2. What movtivated you to work with those with LBD?
LBD is one of the most misunderstood and misdiagnosed dementias. People struggle to get a proper diagnosis and care. It is a challenging journey due to symptoms which are not usually attributed to dementia, such as sleep issues. The fluctuations in symtoms can be very frustrating for those who are diagnosed and their loved ones. As a licensed professional counselor, my approach is about encouragement as well as providing a supportive environment for those affected by LBD.
3. What do you hope to achieve working at LBDA?
One of my greatest goals in for those who are receiving a diagnosis to understand they can still live a very purposeful life despite the illness. My hope is their loved ones will continue to support their independence and see the person and not the disease.
4. What do you believe is the most pressing issue for those living with LBD and their caregivers?
While I am tempted to veer toward promoting earlier diagnoses, I feel that understanding of the disease would greatly impact the quality of life for those who are diagnosed is of greater importance. When the community and healthcare professionals are not familiar with the symptoms of the disease, it makes it difficult for people to obtain proper care and live their life in a positive manner.
5. What is the one thing you want readers to know?
I would like to stress the importance of having a supportive environment. Depression and anxiety are emotions commonly experienced by both care partners and those living with LBD.
I encourage those living with Lewy and their care partners to seek counseling to help them adjust to their new normal and learn important coping skills to use along the LBD journey.
If you are experiencing issues with LBD or would like to seek advice and/or guidance from LBDA staff or a Lewy Buddy, please call our Lewy Line for support. LBDA is here to help you.