Caring for Elderly People With Lewy Body Dementia


Here are 10 tips for taking care of elderly people with Lewy body dementia, from a woman whose parents were both diagnosed with dementia. Her mother had frontal lobe dementia.

Elderly People With Lewy Body DementiaOne of the most interesting books I’ve ever read about dementia is Tangles: A Story About Alzheimer’s, My Mother, and Me by Sarah Leavitt. It’s a powerful memoir that describes how Alzheimer’s disease (a type of dementia) affected Sarah’s mom and family.

Here’s what Ellen Nielsen says about caring for elderly parents with dementia: “Changing my mindset from being a daughter to being a caregiver was mostly a long slow process. Looking back, I feel I had barely transitioned from being a young adult – getting my education and starting my career and still mostly carefree. Subtle things started changing with both parents, but it was definitely more and faster with my mother, who had frontal lobe dementia.”





Ellen also created the Facebook page Caregiver Connexion, which is where I connected with her. Her group is a wonderful resource for adult children caring for parents with dementia – or anybody caring for elderly people with Lewy body dementia. If your elderly people aren’t easy to take care of, read How to Cope With Controlling Parents.

Signs of Frontal Lobe Dementia

Ellen noticed several signs of frontal lobe dementia in her elderly mother. Here’s here experience of the first signs of frontal lobe dementia, in her own words…

Odd items being “stolen”

The house was ‘broken into’ several times and on one occasion my mom had directly confronted the trespasser. Her purse was stolen from the home several times. But so were other unusual items like pots and pans, towels, the vacuum cleaner … did someone really steal those items?!

Change in routine

I got a call from someone at their church saying my parents had not been there for a few weeks and when they asked my parents, they got a strange answer that didn’t really make sense. I asked my mom and she said they had been very busy as of late so had not been able to ‘make it’ to church. This was very odd because my dad was a retired pastor, and they would never have missed church for anything.

This may be one of the things that’s difficult about how to help elderly people with frontotemporal or Lewy body dementia: extreme and unusual behavior changes.

Getting lost, forgetting where the car was parked

I got a call from the neighbor saying he had found my parents at the mall one day and they couldn’t find where they had parked their car. The neighbor brought them home and then they went back later to retrieve the car.

Unusual behavior

My parents made a very unusual trip, but the timelines didn’t add up with other things I knew they had been doing. They also didn’t stop in to see my brother, who lived a half hour from where they had gone, because they ‘didn’t have time to go that far.’ When I asked my mom where they had stayed, she said “My, aren’t you inquisitive?”

Elderly People With Lewy Body Dementia

Ellen’s Dad

Initially these things were just ‘odd’ or ‘unusual’ behaviors, but more and more things started happening. My parents couldn’t explain them and avoided my questions. When I asked each of them about something separately, I got confusing answers that contradicted each other. This all happened over a period of several years. At first it was just little things that were odd or ‘off’ and gradually it became more and more serious.

Those odd or unusual behaviors are sometimes easy to dismiss when they’re happening. When you look back, you clearly see signs of frontotemporal, Lewy body, or other types of dementia.

If you aren’t primarily responsible for caring for your elderly people, read 10 Thoughtful Gifts for Caregivers.

Caring for Elderly People With Lewy Body Dementia

These tips are geared towards adult children caring for parents with dementia. and they can be applied to anyone who is helping elderly people with Lewy body dementia. This is Ellen’s experience, and are in her own words. Everyone’s experience of caring for elderly people with Lewy body dementia is different – but everyone needs support.

If the “elderly people” are your parents, take time to grieve

The most difficult part of realizing my parents had dementia was the emotions, as I started realizing that things were not well. I think I started grieving before I even realized fully what was happening. I would describe this period as if I was harnessed to a three ton rock, and that I was throwing myself against the harness repeatedly trying to move things forward, and maybe budging the rock a millimetre or two, or not at all. And the constant trying was exhausting. It also felt like I was extremely alone. I couldn’t find anyone who was sympathetic or had any understanding — even the doctor felt alien.

Even adult grownup children need to grieve the fact that their parents aren’t who they used to be. If you’ve been working with elderly people for a long time, you know the losses that diseases such as Lewy body dementia brings.

Be persistent with the doctors

I tried taking my mom to the doctor (my mom’s dementia was worse than my dad). Each time I got the report back that she was ‘very healthy’ in fact ‘probably healthier than most seniors.’ This initially comforted me because it made me feel that things were okay and that it was just me finally ‘growing up’ enough to see that my parents were a bit eccentric. However as time when on it became more and more apparent that things were NOT fine. I ended up throwing a fit in the doctor’s office when I got one more diagnosis of ‘fine,’ which finally led to a diagnosis of frontotemporal dementia in my mom.



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Get information about Lewy body dementia and elderly people

Learn as much as you can about Lewy body dementia and elderly people. There are more resources now that I never had , such as web pages, youtube, Facebook, etc. Find other adult children caring for parents with Lewy body dementia, and stay connected with them.

Take it one step at a time

This tip for taking care of parents with Lewy body dementia is from me (Laurie) – I worked with the Alzheimer Society during my practicum placement for my Master of Social Work: Don’t try to learn everything about how Lewy body dementia affects elderly people at once! There is so much information, research , resources, online networks – and it’s all good. But, if you try to do it all you’ll soon be overwhelmed. Take it slowly, go easy.

Realize Lewy body dementia is not easily diagnosed

Don’t assume the medical professionals know or can diagnose dementia easily. In fact, it is often through family anecdotes that they realize that elderly people have a disease such as Lewy body dementia.

Ellen says, “My mom could pass all of the standard cognitive tests for dementia, such as “what time does this clock say?” “Count backwards from 10.” etc.” So, it took a long time for her frontotemporal dementia to be diagnosed.

Prepare a marathon, not a sprint

The journey for caring for elderly people with Lewy body dementia is probably going to take everything you’ve got. Start to put in place supports for yourself, such as a support group through the Alzheimer’s Society, a  senior centre, or your church.

Hire professional caregiving support to come into the home, even though your parents will probably resist it. Find volunteers to check in and help out – there are people who are interested in helping you care for elderly people with Lewy body dementia. It’s exhausting to care for parents with dementia, and it’s important to get help with the caregiving.

Learn how to phrase things in ways that appeal to elderly people

Ironically, my marketing background taught me to phrase things in a way that appealed to my parents whenever possible. When you’re arranging for paid caregivers or caregiving services, tell them you’re “putting in supports so they can continue to stay independent and not have to go into an old folks’ home.” Or, you’re “arranging meals on wheels so mom has more time to look after dad (or vice versa), or so they “have more time to enjoy the retirement they earned.”

When you’re caring for elderly people with Lewy body dementia, you have to be creative.

Appeal to your parents’ inclinations

An example of how adult children can care for parents with Lewy body dementia is to go along with their beliefs.

Caring for Elderly People With Lewy Body Dementia

Caring for Elderly People With Lewy Body Dementia

For example, my mom was put on medication for her dementia. She got blister packs that showed what medication was to be taken when, but it was apparent that she wasn’t taking them properly. So we got a nurse to come in to give them to her. And, then the medications ‘disappeared’ and my mom’s story was that the nurse stole them.

Instead of arguing with my mom, I told her I had a plan to ‘catch that nurse.’ I would lock the medications up and only give the key to the nurse. Not even my mom would get a key. If the medications disappeared we would have ‘nailed that nurse.’ This, of course, took control away from my mom and gave it to the nurse – and my mom was not unhappy because it was going to ‘prove her point.’

Remember you are not alone

What I’ve learned from my own experience (and from working with other adult children caring for elderly people with frontotemporal dementia or Lewy body dementia on my Facebook page) is that we feel alone and isolated. There is a lot of grief associated with the whole situation. It can feel overwhelming and exhausting. I have a “you can handle this, be grateful” personality, and I ended up making myself so stressed that I started having dizzy spells. I couldn’t even walk without holding on to someone or something else.

Look after your own health

Doctors don’t know what causes Lewy body or other types of dementia, but they know prolonged stress does not help. So, make sure YOU don’t end up in the same place; do things to look after yourself. This is not a luxury. This is mandatory for everyone who is taking care of elderly people with dementia, whether it’s Lewy body or frontotemporal or Alzheimer’s.

Eat as best you can. Exercise your body. Exercise your brain. Get exercise. Learn meditation. Learn cognitive behaviour therapy to manage stress, anxiety, depression. Don’t be afraid to use medication if you need it. Do everything you can to stay healthy and strong, so you can continue caring for your parents through their dementia journey.

Visit your local Alzheimer Society – either in person, by phone, or online. Ask about support groups for adult children caring for parents with dementia. Check with local seniors societies for what resources are available. Look for 50+, boomer or retirement organizations. Ask the nursing home. Check with mental health. Ask your doctor. Go to the library. Go to the bookstore. Go online.

If you don’t think you can care for your parent, read How to Help Your Mom Move to an Adult Group Home.

I welcome your thoughts about how to care for elderly people with frontotemporal or Lewy body dementia below. I can’t offer advice, but it may help you to share your experience.





Ellen Nielsen has been a caregiver to two parents with dementia. Now Ellen is committed to being a caregiver for caregivers through her Facebook page Caregiver Connexion. She is also writing a series of books (as simple as children’s books, but with grownup topics) for seniors including those with early to mid-stage dementia. Her first book will be released prior to Christmas 2013. For updates check her caregiver facebook page or her website Magic Word Books. 

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