Lewy Body Dementia: Caregivers’ Personal Experiences

According to the Lewy Body Dementia Association (LBDA), Lewy Body Dementia (LBD) is a progressive brain disease. They say that it also is the second most common cause of neurodegenerative dementia after Alzheimer’s. LBD is a spectrum disorder, meaning it can occur alone or in combination with Parkinson’s disease (Parkinson’s disease with Lewy bodies), or even co-exist with Alzheimer’s disease.

The LBDA states that LBD accounts for up to 20 percent of dementia cases in the U.S. That means that up to 1.3 million cases of LBD are diagnosed in the U.S. alone, with only 30 to 50 percent of LBD cases being accurately diagnosed, even in dementia centers.

As with most types of dementia, family members are the primary caregivers by default, at least at the beginning of the disease. They are usually the people who notice that something is not right with their spouse or parent. Again, like Alzheimer’s and most other types of dementia, care needs escalate with time. This ongoing care can be physically arduous and emotionally demanding.

Jeanne Gibbs, whose husband had LBD, illustrates her husband’s state of mind with the scenario below, which she handled like a pro:

Sometimes (but certainly not always!) the cause confusion in dementia can be determined and dealt with.

I worked at home to support us. One day my husband, Coy, was waiting for a rain-delayed baseball playoff game, and he came into my office.

Coy: Do we have umbrellas for both of us?

Me: Umm… for what purpose?

Coy: It is raining.

Me: Looking around. Yes. It is raining outside. It isn’t raining in here.

Coy: Oh. Are you going to watch the game in here?

Stay connected with Memoryboard: Designed by caregivers. Memoryboard helps families share reminders, messages, updates, and photos on an easy-to-use screen designed for people with dementia. Peace of mind for families, independence for loved ones.

Leslie Kernisan, MD, MPH, is offering two free caregiver training webinars to people who notice that their aging parents need some help now or will in the future. Sign up now to receive the free newsletter from Better Health While Aging and, if you choose, view two great caregiving webinars that can help you help your older parents (and yourself). Or you can go directly to the trainings page.

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Minding Our Elders: Caregivers Share Their Personal Stories: “…This book is for all of us; let it help you cope! Thank you to the author and everyone she spoke with!” …Dolores