Although my last column focused on Alzheimer's disease and dementia, I couldn't allow an opportunity for awareness to slip away. This past week, the wife of Robin Williams' shared his autopsy results. Initially misdiagnosed with Parkinson's disease, Robin Williams' autopsy confirmed that he was suffering from Lewy Body dementia.
Not too long ago, whenever dementia or senility was mentioned, most often Alzheimer's disease (and the associated classic symptoms) was thought of as the culprit. Years ago, when I began lecturing about dementia, Alzheimer's was the dementia that everyone recognized. Other dementias were considered rare, consequently rarely spoken about and much less understood. Even physicians would often clump any dementia symptoms into the "Alzheimer's" category. Not surprising is that the Alzheimer's Association was founded prior to the rise in numbers of all these types of dementia.
With the news of Robin Williams's diagnosis, others will most decidedly benefit from the lack of knowledge about this crippling disease. Diagnosis is challenging. Many struggle to find an accurate diagnosis as they are sent from one doctor to the next — all the while undergoing various medical tests, and still receive little answers to their symptoms.
Lewy Body dementia (LBD) affects an estimated 1.3 million people in the United States. LBD is a progressive disease which causes decline in motor functioning similar to Parkinson's disease, fluctuations in mental or cognitive abilities (but not always with memory problems as a presenting symptom), and eventually a decline to the point of being unable to care for activities of daily living. Many people affected have hallucinations and very vivid dreams in which they may thrash and hit in their sleep — making it impossible to get a good night's sleep for themselves and their spouse. Changes in personality and mood are common as well as depression, anxiety, apathy and delusions for those who are affected. Bladder and bowel habits are also often compromised.
The problem with LBD is that many who are affected begin to show signs of movement disorders first: slowed movement, shuffling feet, becoming "frozen" in stance, rigid muscles and tremors, balance problems, increased falls, smaller handwriting, and a weak voice — all symptoms associated with Parkinson's.
Diagnosis is difficult because there is no single LBD test. It is typically a diagnosis made from ruling out the "other" things that may be causing the symptoms. Frequently medication to help with the motor problems are prescribed. If the symptoms get better, then Parkinson's may seem to be the culprit. In some cases, those with LBD will show improvement in the motor symptoms and in some cases there may be no change or even worsening of the symptoms. This is not an easy disease in which to diagnose. Therefore, diagnosis may often take months or years.
During this time of uncertainty, many exhaust financial resources looking for answers and become frustrated with the lack of direction. The cognitive decline and symptoms associated with LBD are life-altering and devastating to the person affected, yet there are also consequences for the spouse and family members. Personality changes can turn a once pleasant person into someone who is depressed, anxious, agitated, paranoid and delusional. This is not the picture of the typically "forgetful" person affected by Alzheimer's disease. Living with a person suffering from LBD is very difficult.
What should you do if you think there is something wrong with you or a loved one and you have symptoms of motor changes, sleep problems or any symptoms that are causing concern? First discuss these symptoms with your primary care doctor. Early diagnosis is essential to coping with the changes brought by LBD. A neurologist is the best person to see when the symptoms are potentially confusing. In order to receive proper testing, it's essential that a person undergo a thorough personal history and physical, laboratory testing to rule out other diseases or deficiencies, brain imaging and neuropsychological testing.
Dr. Nicole Absar, the Director of Neuropsychiatry at InteGrace Copper Ridge warns that memory does not need to be affected to have a dementia. Dementia can start with Parkinsonian signs and symptoms, hallucinations, or sleep disorders/disturbances. You can go to different neurologists or sleep specialists and get differing opinions. It's essential to see a cognitive neurologist or neuropsychiatrist.
Dr. Absar gathers information from the patient's physicians, family members and then conducts a very thorough assessment of the patient. . Her vast experience is evident when sitting in on an appointment. She often orders testing that may not have been recognized as a need in the past and then meets with the patient and family to discuss the diagnosis and create a practical plan. Most families just want to walk away knowing where is this going and what can they do to be proactive and plan for the future.
There are a few take-away notes that I would like you to remember: Dementia is more complicated than the classic Alzheimer's disease with memory problems — this is becoming a huge problem that I am witnessing within the medical community. The Alzheimer's Association extends its resources to all dementias. Many get a dementia diagnosis and do not realize that the Alzheimer's Association can help them too. And finally, it is OK to get a second opinion. I can't tell you how many people do not want to hurt their doctor's feelings. There are specialists that work with patients with these symptoms — no one can know everything. Although there is no cure for this disease, with proper diagnosis and counseling the person affected and the family can gain understanding and direction for moving forward.
Jill Rosner is a registered nurse, certified geriatric care manager and owner of Rosner Healthcare Navigation. She provides patient advocacy and care management services to clients with health and aging issues. Contact her at JillRosnerRN@aol.com.
Resources
Lewy Body Dementia Association, www.lbda.org, 800-539-9767
Alzheimer's Association, www.alz.org, 800-272-3900
The Mayo Clinic, www.mayoclinic.org
