Your Fiction Reading List: Dementia and Caregiving (Part Two!)


I cut my last post short so that some of you could get to the library or bookstore this weekend to check out The Bonesetter’s Daughter, and I heard that some of you did! After you finish reading that one, you might want to check out my next recommendation.

Still Alice by Lisa Genova

The author of this book was an academic studying Alzheimer’s Disease and other neurological disorders before she became a best-selling novelist. Lisa Genova earned a PhD in neuroscience from Harvard University, so you can bet that she has the scientific knowledge to back up what she writes. The beauty of what Genova has done for Alzheimer’s Disease in Still Alice (and for traumatic brain injury in Left Neglected) is that she has revealed another layer of truth about this disease, moving beyond clinical observations and scientific study to a deeply personal level of compassion and empathy.

Still Alice is written from the perspective of Alice, a Harvard professor and researcher at the peak of her career who starts having some very disturbing spells of confusion and memory loss. She receives a definitive diagnosis of early-onset Alzheimer’s Disease based on genetic testing, then has to cope with all of the life changes that come with a degenerative neurological condition. Continue reading

Your Fiction Reading List: Dementia and Caregiving

I do a lot of reading in my free time, and when I have the choice, I pick novels. Not only do they take me into a new time and place for a while, but I also think that we can learn a lot by reading good fiction, spending time in someone else’s shoes.

Are you a reader, too? If so, you might enjoy two novels that share dementia and caregiving as common themes.

The Bonesetter’s Daughter by Amy Tan

Amy Tan often writes about mother-daughter relationships, particularly the unique relationships between Chinese immigrant mothers and their American-born daughters. You may have heard about The Joy Luck Club, Tan’s first bestseller that eventually became a film by the same name. In The Bonesetter’s Daughter, middle-aged daughter Ruth is navigating some new challenges in her relationship with her mother, LuLing, who is certainly in the early stages of dementia at the beginning of the novel, despite both women’s denial of this fact. LuLing gives Ruth some of her writings, which tell stories from their family history that Ruth had never known. The novel unfolds as Ruth reads more into LuLing’s past, even as the mother is losing her grip on the present. In addition to the wonderfully compelling story of LuLing’s life in China, this novel addresses several issues that will be familiar to those who have encountered dementia: Continue reading

Can Music Cause Harm? (Part Two)

Can music cause harm? In my last post, I talked about how music as a sound stimulus can contribute to overstimulation, increased anxiety, and hearing loss. Many times, people experiencing this kind of music- or sound-related stress show their discomfort in negative behaviors rather than communicating verbally, so it is especially important to be aware of the how the sound environment is affecting the person you care for if they can’t tell you what’s bothering them.

Music can also potentially cause harm in the form of unexpected emotional or physical responses that could defeat a person’s coping mechanisms. There can, in fact, be negative responses to music that you might not expect, and not being aware of and prepared for these negative responses can lead to harm. Here are four areas of concern: Continue reading

Can Music Cause Harm? (Part One)

Can music cause harm?

This is a big question for music therapists. Of course, all of us are surrounded by music every day, and you’ve probably heard by now that music and music therapy can be a great help for people dealing with many different problems. But could it be dangerous?

I won’t tell you that music could kill you, although given specific circumstances, perhaps it could. Rather, I wanted to tell you about some of the ways I’ve seen music cause harm, and suggest what to do about it. I’ll discuss three areas today, and four more in my next post. Continue reading

Forgiving Forgetfulness

Here’s what happened to me yesterday:

I led a music-making group at a nursing home in one part of Kansas City. It went great! Everyone was really clicking with the music, playing drums and singing while I played guitar, and they all seemed to be enjoying our discussion about baseball and the All-Star Game to be played in Kansas City last night. After the music ended, I finished my documentation, chatted for a moment with the activity director and the receptionist, then let myself out the door, loaded up my equipment in the back of my car, and drove off to another part of the metro for a business lunch.

Fast forward two hours. I arrive at an assisted living home for my next music therapy group, unload my equipment, take it all in the home, start unpacking and realize…

I don’t have my guitar.

My stomach sank. I was thrown off by not having things in their proper places, and I felt kind of dumb for forgetting my guitar somewhere. After all, it’s kind of bulky and heavy, and I carry it almost everywhere I go. I thought, “I shouldn’t have forgotten that.”

How could I forget this?

It didn’t take long for me to figure out that I had left my guitar at the first nursing home. I called them to confirm that it was still there, which it was, safe and sound. I led my music therapy session at the assisted living home using hand percussion instruments and body percussion, which, incidentally, led to some interesting and out-of-the-ordinary musical interactions. I then rescheduled my next session so that I could pick up my guitar before my last appointment of the day. Everything worked out fine. People were understanding, and no one accused me of being a horrible person or ruining their day.

“So what does this have to do with caregiving and music?”  you might ask. “Have you forgotten what this blog is about, too?”

Don’t worry – I do have a point. It’s this:

Be forgiving of your own forgetfulness. Continue reading

Song Spotlight: T’ain’t What You Do (It’s the Way That You Do It)

  • Mood: Lighthearted
  • Theme: Letting go and taking it easy
  • Tempo: Upbeat
  • Style: Calypso

I’m always looking for songs with catchy choruses that lend themselves to new song verses, and I recently found a gem: “T’Ain’t What You Do (It’s The Way That You Do It).” Written by jazz musicians Melvin “Sy” Oliver and James “Trummy” Young, this calypso song was first recorded in 1939 by Jimmie Lunceford, Harry James, and Ella Fitzgerald. It’s a popular song for dancing the shim sham, a wonderfully accessible jazz line dance. (Check out the instructional video here!)

The chorus is downright infectious:

Oh ‘t ain’t what you do it’s the way that you do it
‘T ain’t what you do it’s the way that you do it
‘T ain’t what you do it’s the way that you do it
That’s what gets results

Then, the verse reminds you:

You can try hard
Don’t mean a thing
Take it easy, greasy
Then your jive will swing

The rhythm is catchy and gets you moving. Continue reading

“Still a Child” – A Caregiver’s Song

Last week, I received an email from Bakhus Saba, a caregiver who wants his song to be heard. Nine months ago, he placed his mother in a retirement home. She has Alzheimer’s disease, and he had lived with her for all of his 52 years and been her caregiver for seven years. He wrote “Still a Child” together with John and Michele Law, about what he went through as a caregiver when he placed his mother in full-time care. Continue reading

Take Off the Pressure: 7 Creative Experiences to Try with Your Loved One with Dementia

I heard a great story on NPR last week about a program that encourages creativity among people with Alzheimer’s disease as a medium for meaningful, enjoyable communication with others. In the TimeSlips program, a facilitator shows folks a photo and encourages them to make up a story about the characters in the picture. Without the pressure of remembering who people are or what is supposed to be happening (as might happen when you’re looking at a family scrapbook), someone with memory loss can have a fun time making up a story about someone else’s life. Plus, as one researcher pointed out in the NPR piece, you don’t have to be a trained therapist to try out storytelling with your loved one. In fact, you can try it out for yourself on the TimeSlips website.

I really love this concept, because it lines up with two ideas that I preach all the time:

  1. Creative activities – music, storytelling, dance, art – are universal human experiences that can be meaningful, even for a person with memory loss.
  2. Caregivers can engage in creative activities with their loved ones as a means of connecting with them.

Creative activities take the pressure off of both the caregiver and the person with memory loss. The person with memory loss may really want to remember the details of their personal history or their current circumstances, just as much as the caregiver wants them to remember, and knowing that they can’t remember can cause anxiety. At the same time, the caregiver is often distressed by their loved one’s declining ability to remember things. Each person’s anxiety can feed into the other person’s anxiety, and then time spent together is all about worry and fear instead of simple, fun, meaningful experiences.

When you’re making up something new, though, you don’t have to remember the details. The pressure is off both people. You don’t have to worry about creating a “stupid story” or “improvising wrong,” because the whole point is making up something new, in the present moment – something that only needs to last for the present moment, not for an eternity of literary critics and art historians.

You simply get to enjoy the act of creation. 

So, I had the fun of creating a list of creative experiences to try with your loved one. Continue reading

Music Therapy Does More Than Address Non-Musical Goals: Part One

The idea of music therapy can be confusing. What does a music therapist do, exactly? A common answer is to say we use music to address non-musical goals. For example, we might employ a particular method to help someone regain walking speed after a stroke, or to help someone express and explore their feelings of anger, guilt, and sadness following a divorce.

This description – using music to address non-musical goals – is truthful, I think, but it’s also incomplete. Our focus is not only on physical, emotional, and social goals.

As music therapists, we’re also there to help you create, enjoy, experience, and live music. Then, through the music, people can find many other positive outcomes. Continue reading

How I Start Group Music Therapy Sessions

Do you know this song?

Sing along with me!

He’s got the whole world in his hands

He’s got the whole wide world in his hands

He’s got the whole world in his hands

He’s got the whole world in his hands

This song forms the basis of how I start many of the group music therapy sessions I lead, especially those with seniors who have dementia. Continue reading