Lewy Body Dementia (LBD) is a disease that affects a person’s thinking and motor skills. Due to the illness, people with LBD may behave in ways that are different than the past. LBD causes people to absorb information more slowly, have problems with balance, have difficulty handling things, experience hallucinations and sleep more, among other symptoms.
It can be hard for friends and family to understand how someone with LBD feels—and even harder to know what to say or do. Members of the Ann Arbor Support Group for those with LBD have put together some suggestions.
I have Lewy Body Dementia (LBD). Please . . .
Give me some slack. It takes me a little longer to do things because my brain works more slowly, but I’ll get there. Just give me time.
Don’t hover. It’s annoying and sometimes it makes me nervous. You probably wouldn’t like someone hovering over you constantly.
Let me make the mistake—don’t do it for me. I’m sure you want to help, but it can feel demeaning to be treated as though I’m incapable of doing things for myself.
Continue to treat me like I’m part of the family. My illness is not contagious and I still care for you as much as ever. Invite me to things and if I don’t feel like going, I’ll let you know.
Don’t make assumptions—ask me. For example, just because I was tired one day doesn’t mean I’m always too tired to do something. Please don’t think for me—ask me.
Be patient when we’re talking. Sometimes I lose my train of thought, but give me a chance. My thought will come back around.
If you can’t hear me, ask me to speak up. I’m not always aware that my voice may have grown softer. If you don’t tell me, I don’t know you can’t hear me.
Don’t talk about me as though I’m not there. My thinking may be affected but I can still hear. Would you like to be treated as though you didn’t exist?
Remember that the time of day and medications can affect my energy and alertness. Sometimes my meds—and when I’ve taken them—can really impact how “with it” I appear. The effects are as unpredictable to me as they are to you.
A few of the things we appreciate
This list wouldn’t be complete if it only focused on what not to do. Group members recognize how much love and support their family and friends give them. Here are some of the things we appreciate.
I like it when . . .
You help with my medications. I appreciate your helping me stay healthy by organizing my meds and giving me reminders.
You go to doctors’ appointments with me. It’s good to have another set of ears taking in the information and advocating on my behalf.
We’re working as a team. This disease is affecting you as well as me and it’s good to feel that we’re dealing with it together.
You research helpful LBD information and resources. I appreciate the effort you put into looking for new information that can help us deal with this disease.
A final note for caregivers
Be sure to take care of yourselves. It’s great you’re concerned about me, but if you wear yourself out, how will you be able to help me? Remember, we’re in this together.
This list is not comprehensive
It simply reflects the thoughts of the members of the Ann Arbor Support Group. If you are not sure what is helpful, ask your loved one. And keep in mind that things are likely to change as the disease progresses. Use this document to start a conversation with your LBD “teammate.”
Note: This information was created by people with Lewy Body Dementia (LBD) who attend a support group just for them while their care partners meet in another room.
- Learn more about the Ann Arbor Area LBD Support Group (a Rinne LBD Initiative Group)
For more information about LBD, good resources include:
- Visit the Lewy Body Dementia Association website
- The Caregivers Guide to Lewy Body Dementia by Helen Whitworth and James Whitworth
- Lewy Body Dementia: Information for Patients, Families and Professionals published by the National Institutes of Health
For Lewy Body Dementia (LBD), there is no cure. But there is hope. The Rinne Lewy Body Dementia Initiative is part of the University of Michigan Alzheimer’s Disease Center (MADC). Experts at MADC are leading the study of the biologic processes that cause dementia, discovering new ways to detect the disease earlier and searching for effective treatments. We are dedicated to moving what we learn in the laboratory to the clinic for the benefit of patients.