How to create a dementia "joy plan"
Welcome back, Careblazer!
Today I want to talk about a book I recently read called Dementia Reimagined.
Specifically, I want to share some takeaways from a chapter in the book called "Try a little tenderness". It's essentially about how this psychiatrist has planned ahead for facing a future where she may have dementia. She states that somewhere between “⅓ and ½ of Americans will have dementia by the time they are 85". She’s assuming that she’s in the batch that will have it based on her family history, and is planning ahead for that time.
If you would like to watch my video on this topic, click here.
What might surprise you is that her planning for a future with dementia is centered around joy and how she can increase the chances her life will still have joy in it despite the disease. This isn’t the perspective most people have and I thought it was refreshing, thought-provoking, and I’m encouraging all of you to create your own dementia joy plan. Also, you might get some creative ideas you can try out now with your loved one with dementia.
She asks, "how can she make every remaining day a good day?" She realizes that there will be no cure for dementia in her lifetime or in the lifetime of all the Baby Boomers. So, while we can’t rely on getting a cure by then, we can rely on finding ways to improve the quality of life.
She basically looks at some of dementia’s challenges and then sees how she can find ways to still enjoy life despite those challenges. Doing it now, personalizing it for herself. She found that by doing this for herself, she felt less afraid. It helped her feel better. Which is the opposite of what most people think about when they think about dementia. They think about all the terrible challenges and losses, but they don’t look at it from a lens of problem-solving, curiosity, and joy.
Most people who think about getting dementia, think about the horror of not being able to go to the bathroom independently, losing the ability to drive, not remembering family and friends. For you, you are probably thinking of all the things you see in your LOWD and are fearful that you may start to have some of those same symptoms in the future. When most people think about dementia, they are thinking about the awful and difficult reality of that moderate to severe stage. Here, Dr. Powell shares coming up with a plan to implement in the early/mild stages. I hope you’ll find some help in some of her ideas as you plan for yourself. Whether you get dementia or not, I find her way of developing, what I’m essentially calling a “late-life joy plan” to be helpful with many of the limitations and functional declines that come in old age.
I ask that you read this blog post with the idea of creating your own joy plan for the future. But perhaps you might also get a spark of ideas that can help your current LOWD. Although they might not be directly involved in the planning of their joy plan, you might have a good idea of what they might include and you can try this approach with them now.
Before I share some of those takeaways, I want to invite you to a free online class I’m hosting on using the Careblazer MAP to lower your dementia caregiver stress and feel better while caring for your LOWD. It’s based on my 3 step system and I look forward to sharing it with you. The link to sign up is here.
What the author of this book essentially did, was look at all the things that bring her joy in her life and think about how she can bring those things in her life if she had dementia. She thought about how she can adapt aspects of those activities so that even as her physical and cognitive abilities declined, she would still be able to engage in those activities in some way.
One of the first things that Dr. Powell talks about is making a dementia song playlist. This is essentially a playlist of songs that she finds happy, uplifting, that make her smile, or bring up memories. People with dementia, even advanced dementia respond well to music. So, the idea is to think about the songs of your teenage years and early adulthood. Songs that have meaning. And create a list. This can be a nice way to enjoy some moments when you have dementia and you might not be able to name the song or remember that you even liked it. When that playlist starts playing, the brain perks up and brings you a moment of joy. I love this small but meaningful idea. She shared some of the songs she will include on her list, including songs that reminded her of when her children were born and her husband’s favorite song.
She also enjoys gardening. She wants to include some type of connection with gardening in her dementia plan. She realizes she will no longer be able to maintain a garden on her own at some point, but going to a community garden and looking at the plants, butterflies, and birds might be enjoyable and still connect her to the gardening world. She also talked about how people with dementia can easily kill plants by overwatering them but by giving someone with dementia a mister to mist plants all day long to help keep them happy and engaged, even in the colder winter months with indoor plants.
If you have a LOWD who enjoys plants, this might be something you want to try. There’s some research showing that gardening and taking care of plants can improve mood in someone with dementia. That’s why “dementia gardens” have become so popular in facilities.
She also enjoys reading but knows at some point she won’t be able to enjoy reading the types of books she reads now. So, she thinks about eventually reading children’s books. Similar to the books she read to her children when they were growing up. She talks about how a failing memory is a benefit in these situations so she can read her favorite books over and over without recognition of having recently read that book. When she can’t read anymore, she talks about switching to children’s books on audio.
She talks about her joy of caring for others and the use of dolls or animated animals for people with dementia. She talks about how these items have worked to help calm people with dementia and she’s open to this option for herself. She specifically mentions a kitty called Joy for All Tabby cat that is able to purr and provides comfort. She can see herself enjoying something like this further in her disease. I know that I will certainly be including something about animals in my dementia joy plan for sure.
Find the cat animated pet here
Find the dog animated pet here
None of these things are going to cure dementia. It’s not going to take away all the challenges and stop the decline. BUT, it may help bring joy into their life for a while, and that is a worthwhile endeavor.
She sees these things as ways to push back against the fear-mongering image of dementia.
She ends by saying, “a life with dementia for you will look different. But if you don’t create the image you’d like to see, someone else will design your life, and it may not suit you half as well.”
Think about some things you enjoy now and how you might enjoy them in your early dementia years. Write them down and share this with your family or friends. I look forward to creating my own dementia joy plan sometime soon.
You can find the book, Dementia Reimagined here.
I’ll be back next week, Careblazer. In the meantime, don’t forget to sign up for my upcoming class where I’ll share the Careblazer MAP for the first time ever here.
