WHY YOUNG PEOPLE SHOULD CARE ABOUT ALZHEIMER’S DISEASE

BY MARY WATSON

I am a high school student, a member of Girls Write Nashville, Loudmouth Community Music and a writer for the Youth Voice Column for The Contributor. You might wonder why a teen like me is writing an article about Alzheimer’s disease.

Alzheimer’s is a degenerative brain disease that affects the memory, thinking and behavior of older people. I am writing for two reasons. First, I would like to find out, and let other young people know if there are things we can do while we are young to keep from getting the disease. Second, and more importantly, I am writing because Alzheimer’s is a disease that at some level affects almost every family. It has affected people in my own family. When I was 5 years old my great-grandmother took me to visit her favorite aunt in a nursing home. Her aunt had Alzheimer’s and what I remember the most about that visit is that no one really knew what to say to her or how to act around her.

To learn more about Alzheimer’s, I talked to a volunteer from the Alzheimer’s Association. (Read my Q&A with her below.) Her name is Amy LaGrant. She recently lost her father to the disease. I asked her if there is anything we can do in our young years to keep from getting the disease. I also asked her how a person should act when one of their loved ones is diagnosed with it.

I asked LaGrant about early prevention. She said, “The likelihood of developing Alzheimer’s is influenced by many risk factors that we cannot change, such as age and family history.”

However, she also said that there are some precautions that we can take while we are young — things like preventing head injuries and leading a healthy lifestyle can lower the risk of getting the disease later in life.

LaGrant offered this advice to young people who might have a grandparent suffering from the disease. She said, “Continue to just be their grandchild, love them, engage with them, share your life with them. While they may not be able to mentally or physically keep up, they still love you and want to be there, even if it is just sitting quiet holding your hand. Don’t be afraid to continue to love them as the people they are.”

She also shared the best ways to treat and speak to people with the disease. Speak directly to them, don’t exclude them from conversations, give them time to express their thoughts, give them time to respond, don’t interrupt, laugh with them, and lastly don’t pull away.

There are many ways people can join the fight against Alzheimer’s. The Alzheimer’s Association has several volunteer opportunities here in Nashville. They need educators and volunteer speakers to help educate communities. They also need people to help enact legislation that serves those impacted by the disease. People can help by telling their stories to lawmakers.

This is an exciting time in Alzheimer’s research. The Federal Drug Administration is expected to consider a new drug called Aducanumab. Hopefully, it will be approved soon.

That being said, with the drug and with the help of organizations like the Alzheimer’s Association and the support of communities perhaps we can eventually eliminate Alzheimer’s. It is my hope that researchers discover a way to make the disease disappear. It is also my hope that the world becomes a healthy and happy place for people to grow old in.

On Jan. 27, 2021 Mary Watson’s two times great aunt, Shirley Ann Couturier Wallace lost her battle with Alzheimer’s. She died in the home of her granddaughter in Springfield Oregon after suffering from the disease for many years.

The Youth Voice Column is a partnership between The Contributor and Girls Write Nashville. In Girls Write Nashville, as well as their gender neutral wing Loudmouth Community Music, students are guided through the process of writing and recording original songs. In this project, youth writers will offer essays, poems and insight to The Contributor’s regular roster of stories.

Q&A: AMY LAGRANT WITH THE ALZHEIMER’S ASSOCIATION

What exactly is Alzheimer’s? Are there ways to prevent it?

Alzheimer’s disease is a degenerative brain disease and the most common form of dementia. It affects memory, thinking and behavior. Symptoms eventually grow severe enough to interfere with daily tasks. An individual’s likelihood of developing Alzheimer’s is influenced by many risk factors that we cannot change, such as age, family history and genetics. However, there are some risk factors that we can influence, including preventing head injuries, working to maintain a healthy heart, and pursuing overall healthy aging through a healthy diet, staying socially active, avoiding tobacco and excess alcohol and exercising the body and mind.

As a person who lost a parent to Alzheimer’s what do you think is the most important thing for people to know if someone in their family is diagnosed with this disease?

In my early twenties, I began my journey with the disease upon the diagnosis of my grandfather. He did not have lots of money nor did we have an understanding of the disease at that time. Our family was so reactive to everything that was happening. He spent the last years of his life frightened, misunderstood, and alone. When my dad was diagnosed with the disease over ten years ago, he expressed that his biggest fear was to end up like his dad. He spent many years in denial of his condition, trying to maintain some level of normalcy. Pushing himself, not accepting what was happening, and fought hard against what he thought his destiny would be life with no purpose, alone and helpless.

About three years ago, my parents both moved to live closer to me here in Middle Tennessee. Some days he didn’t know where he was, still thinking he was back in California. The hardest part of the transition was watching him become disconnected from his hunting and golfing buddies. Those friends who loved the man that my dad was, their friend, and even though he was declining, knew that he was still with us. My dad was the proper patriarch in our family, the dedicated provider in all sense of the word. As he declined, he struggled to manage the finances, upkeep of the house, and all the “Dad” things he loved to do. He felt that he wasn’t “pulling his weight” and had no use to us all.

Then slowly, my relationship began to change with my dad. Rather than him being the person who solved all the family problems, we became a team. We authentically came to the disease with all of our imperfections. We yelled, hugged, cried, and shared all of our humanness in these years. The disease slowly took more and more of my “old” dad away, but a new man emerged. A loving, talkative, expressive man that I did not recognize.

One that said he loved me and was proud of me, maybe not in those specific words, but with his glances and touch. Learning how to navigate and respond to this new version required reprogramming of my story. This man, my dad, is giving me the emotional support that I ached for as a child. Was this the gift of this disease? To allow my dad to unconsciously soften to be all the things I had wished for in a parent. Why now? Why not earlier? Hoping not to squander away this time, we talked, not always in a linear way, and not productively. But since it was difficult to communicate for both of us, we listened harder. Now that he is gone, I playback

How should someone respond to a grandparent or other relative who is in the early stages of Alzheimer’s?

Continue to just be their grandchild, love them, engage with them, share your life with them. While they may not be able to mentally or physically keep up, they still love you and want to be there, even if it is just sitting quiet holding your hand. Don’t be afraid to continue to love them as the people they are.

What is the best thing they can do for them in the early days? Later on, when they start to forget people and things what is the best way for their grandchildren or great grandchildren to talk

Rather than him being the person who solved all the family problems, we became a team. We authentically came to the disease with all of our imperfections. those conversations in my head. Some make me smile, while others cause a tear to stream down my cheek.

The other day while going through all of his stuff, I found a letter he had written to my sister. Telling her that he loved her and always had her best interest in mind, it was pages of incoherent sentences and half thoughts. My first inclination was “where is my letter?” and then slowly realized that he didn’t need to write me a letter. I got the live in-person letter every day for the last three years.

My letter to my dad is that I honored him, his wishes and gave him the dignity and love that made his life full of purpose. I appreciate everything my dad gave me through my life, shelter, food, never to live without, and a strong work ethic. But Alzheimer’s gave me a man who I may have never gotten to meet. My love story with the disease continues, and I hope that families get to meet another part of their loved ones that they may not have known even existed.

Speaking to young people, what advice can you give them about how to them?

• Don’t make assumptions about a person’s ability to communicate because of an Alzheimer’s diagnosis. The disease affects each person differently.

• Don’t exclude the person with the disease from conversations.

• Speak directly to the person rather than to his or her caregiver or companion.

• Take time to listen to the person express his or her thoughts, feelings and needs.

• Give the person time to respond.

Don’t interrupt unless help is requested.

• Ask what the person is still comfortable doing and what he or she may need help with.

• Discuss which method of communication is most comfortable. This could include face-to-face conversation, email or phone calls.

• It’s OK to laugh. Sometimes humor lightens the mood and makes communication easier.

• Don’t pull away; your honesty, friendship and support are important to the person.

What would you like people to know about Alzheimer’s?

It surprises you, every minute of every day.

Please tell me about the Nashville Walk to End Alzheimer’s. When is it? Where is it? How does a person sign up for it? What are the funds raised used for? Beside the walk what else can we do to help? Please tell me something positive about the fight against Alzheimer’s. Is there hope that the disease will one day disappear?

• Date/location -TBD • Sign up - alz.org/walk

• The Alzheimer’s Association has several volunteer opportunities outside of participating in the Walk to End Alzheimer’s! We always need community educators who are trained, volunteer speakers who help us educate communities across the state about Alzheimer’s disease and all other dementia. We also have volunteer opportunities within our advocacy work, including volunteer spokespeople who share their stories with lawmakers in an effort to help us enact legislation that serves those impacted by Alzheimer’s disease. You can see a full list of our volunteer opportunities at alz.org/volunteer

• We are in the middle of a very exciting time in Alzheimer’s research!

The FDA is expected to consider a new drug called aducanamab, which is a treatment for Alzheimer’s. The

Alzheimer’s Association is advocating for this drug to be approved for use and we are working to ensure the

FDA hears all relevant information — including stories and insight from families who have been impacted by this disease. We know that together, with the help and support of our communities, we will eventually eliminate Alzheimer’s disease!

The Alzheimer’s Association helps family members with their concerns issues by offering a 24/7 toll free line with a trained clinician at the following number: 800272-3900.