Mom may have Lewy body dementia — what is it?

My mom is 74 years old. She is having difficulty taking care of her finances and has started having some visual hallucinations. Other changes are going on with her, almost like a personality change. Her doctor thinks that she may have dementia, possibly of the Lewy body type. I’ve never heard of this. Can you tell me about it and what I can do to help her? — R.B., Walnut Creek

I’m really sorry to hear about the struggles your mom has been facing. And I know it’s especially scary and disorienting to get a diagnosis of something that you have never heard of and don’t understand. In fact, many people haven’t heard of Lewy body dementia, certainly not as much as its “cousins,” Alzheimer’s disease and Parkinson’s disease. Sadly, Lewy body dementia has been in the news lately, when it was revealed that Robin Williams was exhibiting symptoms of it, associated with his Parkinson’s.

According to the National Institute on Aging, approximately 1.3 million Americans, mostly older adults, are affected by this brain disorder. In Lewy body dementia, abnormal protein deposits in the brain, called “Lewy bodies,” disrupt the neuronal cells and their communication with one another. LBD develops slowly and progresses over time. The main manifestations are significant loss of cognitive functioning and changes in attention, problem solving and handling finances. Symptoms affecting movement, such as rigidity, shuffling gait, balance problems and falls, may also exist. Visual and auditory hallucinations are found in up to 80 percent of people with LBD. In addition, cognitive abilities may fluctuate, making a person appear to function better on one day and worse on another.

There are officially two types of LBD: dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD), although some clinicians believe that these are more on a continuum than two separate types. In DLB, cognitive challenges develop first, followed by movement symptoms. In PDD, movement symptoms are most pronounced, with cognitive symptoms developing years later, although not all people with Parkinson’s develop dementia.

Although there is unfortunately no known cure for Lewy body dementia, there is a lot that can be done for your mother and for you as her caregiver. To begin with, the correct diagnosis is absolutely essential. Neurologists along with geriatric psychiatrists, geriatricians and neuropsychologists have the skills and the expertise for this type of dementia assessment.

A hospital affiliated with a medical school may have a clinic specializing in dementia movement disorders, offering a high level of diagnostic and treatment capability. This will involve medical testing, brain imaging and neuropsychological testing, among others.

I know that getting the right diagnosis and then thinking about the complex and difficult journey of caring for your mom must feel overwhelming. I strongly recommend that you work toward creating a coordinated care team to ensure thorough care and improve quality of life and independence for you and your mom. A good team could consist of a physical therapist to help with movement problems, a speech therapist to help with low voice volume or swallowing difficulties, and an occupational therapist to identify strategies for carrying out activities of daily living such as eating and bathing.

A care manager (social worker) can coordinate the team, oversee the overall system of care, set up in-home help, train caregivers, provide your mom and you with emotional support, and offer you care-giving respite. A care manager can also help you plan for future needs. Having a social worker involved can be particularly helpful because she/he will be able to identify if either you or your mom start to experience depression as you go through this process.

Your social worker can also recommend stress reduction techniques such as music or pet therapy and help you both avoid the tendency to self-isolate. To minimize stress and anxiety for your mom, a care manager can manage behavioral and mood symptoms by adjusting the environment to the desired level of stimulation and lighting and by setting up daily routines. Simple tasks and a consistent schedule can decrease confusion that may lead to agitation in someone with LBD.

As with any major diagnosis, it’s important for your mom and you to maintain a meaningful and structured life. Encourage her to be active socially and physically as much as she is able. This is good for her cognition and general quality of life. Being part of a larger community of people dealing with LBD may help you normalize your feelings along this journey of care.

Some resources specific to LBD are the Lewy Body Dementia Association (www.lewybodydementia.org) and the LBD Caregiver Link (talk to a volunteer at (800) 539-9767). Some other helpful resources may be the National Institute on Aging (www.nia.nih.gov/alzheimers), the National Institute of Neurological Disorders and Stroke (www.ninds.nih.gov), the UCSF Memory and Aging Center (http://memory.ucsf.edu) and the Family Caregiver Alliance (www.caregiver.org).

There is no denying that Lewy body dementia is a devastating disease that doesn’t yet have a cure. Education and planning are central to decreasing stress and care complications during the progression of the disease. Informing yourself as much as possible about treatments and disease management is perhaps the best thing you can do as a caregiver. And then surround yourself with a support team that will walk this path with you and your loved one.

 

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Rita Clancy

Rita Clancy, LCSW, is the director of adult services at Jewish Family & Community Services of the East Bay. Have questions about your aging parents? Email rclancy@jfcs-eastbay.org or call (510) 558-7800, ext. 257.