What is Lewy Body Dementia (LBD)?
LBD is a complex, progressive form of dementia caused by abnormal protein build up (Lewy bodies) in areas of the brain that regulate cognition, movement, behavior, and the autonomic system. LBD is the second most common form of dementia after Alzheimer’s. It affects an estimated 1.4 million individuals in the US. While the disease is not uncommon, getting a diagnosis can be difficult.
Symptoms
The most common symptoms are changes in thinking, behavior, movement, and sleep. Manifestations might include sleep disorders (RBD), hallucinations, mood changes, unexplained falls, paranoia, delusions, tremors, loss of balance, stiffness, visuospatial issues, and difficulty with concentration, problem solving and decision-making.
Other names
LBD is an umbrella term for two related conditions: Dementia with Lewy Bodies (DLB) and Parkinson’s Disease Dementia (PDD).
Why Join a Support Group?
Support groups exist because it’s therapeutic to share experiences with others who get what we’re going through. The goal for each meeting is to collectively brainstorm ways to better cope with our problems, feelings, and emotions. They work because we find strength in the commonality of the struggle. Support groups offer information, compassion, encouragement, acceptance, and validation. They also provide a much-needed opportunity to let off steam and recharge our energy and patience.
Build your village.
Caregiving is not for the faint of heart, especially when it comes to family. It requires an overabundance of love, patience, compassion, empathy, faith, kindness, strength, and time. It requires a village. With only two hands and 24 hours in your day, you will need help.
A loved one’s disease diagnosis can be overwhelming, but there are many steps you can take to improve the quality of life for your loved one and yourself. Below is a list of suggestions to help you get started. Be proactive. Start planning and building your village now, before you need it.
You, the caregiver, are the essential part of your loved one’s care village. Be kind to yourself. You can’t give what you don’t have. If you’re tapped out, it’s like trying to cook dinner when the pantry and fridge are completely empty. Occasionally doing something for yourself is not selfish. It replenishes your “supplies” and your loved one directly benefits.
News
Find links to LBD-related news, updates, trials, treatments and seminars.
Resources for caregivers
Find various recommendations and resources for books, dementia organizations, doctors, medications and coping strategies.