A. Obtaining a diagnosis is usually the first challenge. Research indicates an LBD diagnosis typically involves seeing 3 physicians over 18 months. The onset timing of distinguishing LBD symptoms, misdiagnosis or referral to more specialized doctors commonly delay LBD diagnosis. The early stages of LBD may also include symptoms not immediately recognized by the person with LBD, family or professional advisors as related to the Lewy body disorder. These include sleep problems which may have been present and problematic for many years, bowel and bladder problems, loss of smell and taste, dizziness, unsteadiness and falls. Neurologists make the majority of LBD diagnoses, but other specialists like geriatricians and geriatric psychiatrists diagnose LBD as well.
Soon after LBD is diagnosed, families should begin researching community-based resources in advance, like home health and aging services. People with LBD must also review their finances and legal affairs in order prepare for the time they can no longer manage their own personal matters. An elder law attorney is an excellent resource and can prepare the legal paperwork to empower a trusted, responsible individual to serve as power of attorney for legal, financial and healthcare decisions.
Safety issues like driving and medication management should be considered early. A person with LBD may be an unsafe driver early in the course of the illness due to visual hallucinations, muscle rigidity or slow reaction times, and fluctuating cognition. A physician may be needed to advise the person with LBD to stop driving, but research indicates the family caregiver typically determines when driving is no longer safe for a person with dementia.
The person with LBD will likely need assistance with high level functional activities like managing a household, paying their bills or using a computer or household appliances independently. Their cognitive abilities may vary on any given day, making it difficult and even frustrating to anticipate how much help is wanted or needed.
Navigating family dynamics and role changes are often difficult in early LBD. Family meetings, putting the needs of the person with LBD equally important as caregiver needs, and family counseling can be helpful at this time.
This is a good time to consider participating in LBD research studies. Participating in research studies provides people with LBD access to LBD expertise, may provide for more extensive diagnostic or treatment options, and may include a brain autopsy at the end of life. Researchers also need healthy people without LBD to participate in studies, so if no LBD trials are in your area, friends and family members should consider participating in a dementia or movement disorder study as a healthy control. Visit www.clinicaltrials.gov to find trials near you.
By Dr. Ian McKeith
Professor of Old Age Psychiatry, Newcastle University, Newcastle upon Tyne, UK
LBDA Scientific Advisory Council Member
Jeff: One thing I found to be very helpful was to keep a daily log. It prevents bias on my part where I can objectively see how things are going, and not see them from day to day based on my own level of energy. If I chart things, I can see patterns quickly.
Nona: A log would have overwhelmed me, as I was still working. Talking things out well in advance was really important, even the hard decisions and upsetting topics. I know it makes those scary things more real, but you have to put it on the table. That way there are no surprises and everyone gets emotionally prepared for the time those difficult things come to pass. It’s better to prepare in advance than to deal with things when you can’t ignore them any longer.
Also, be open about the diagnosis, limitations and behaviors with friends and family. They know something is wrong even if you haven’t said anything. Give them the opportunity to get comfortable with the news and adjust to the changes with you. We still play card and board games with our friends, making special rules and exceptions for my husband. We also go out to dinner and social events. Everyone knows so they watch out for him, help when he can’t communicate clearly, and go with the flow, when he does or says something odd.
Amy: I second the talking about things again and again. For us, there were times he did not remember having the conversation.
Ricki: My husband was very relieved when he got a name for his symptoms so he could blame the disease. It was a whole different attitude to it.
Jeff: When you focus on yourself as a caregiver, keep in mind that none of us were trained or had the background to be a caregiver. It’s going to change us as our loved one change. Our expectations should not be perfection. As we go down this road, we are going to make mistakes. We should love ourselves as much as we love our loved ones. Expect a carousel ride with ups and downs.
Ricki: Don’t take things personally – I get a lot of accusations from my husband in a facility, like he says nobody told him where I am or when I am coming in again. When he asks me where I’ve been, my first thought is to say I was just there yesterday, but I don’t get defensive any more.
Cordelia: You need to have patience and I recommend going to support groups. Also, read as much as you can about this disease. Learn to tell fiblets to the person with LBD when they are having a hallucinations. For example, Mom would constantly be looking for missing kids (hallucinations) and asking where they went. We would say, “Oh, their parents came by and picked them up.” This would cause her to relax.
And give them chores that they can be successful at. Mom's job was setting the table when she came to visit. Play games and let them continue to do hobbies as long as they still enjoy them. Mom liked to go to the library. She was an avid reader, both before and during the disease, and she would go through tons of books. Now, she would not read them all, but she enjoyed picking them out.
Jeff Maruna, Nona Halvorson, Amy Silverman, Ricki Cunninghis and Cordelia Bohreer are members of LBDA’s LBD Community Discussion Panel.