The Power of Music To Make an Impact

In this blog post by AFA Teens Advisory Board member, Robbie Hynes, he shares his experiences playing music for residents with Alzheimer's disease and imparts how powerful its effects can be on individuals with the brain disorder.  

For the past several years I have been an active and proud member of AFA Teens. I first learned about the Alzheimer’s Foundation of America when I wanted to get further educated about the effects of Alzheimer’s disease, as well as the many ways in which doctors are working to find a cure for the disease. As a child growing up and witnessing my grandfather’s experience with this disease, I felt that I was unable to do anything but comfort him as much as possible. I concluded that if all of the brilliant doctors in the world couldn’t provide a cure, than what was I going to do?

When I entered high school I became more involved with AFA Teens through concerts that my siblings and I hold at assisted living facilities. I began to think of more significant ways in which I could contribute to help raise awareness of Alzheimer’s disease, and if possible see if music had any therapeutic value for individuals with the disease.

The way my family got involved in music started as individuals and more or less morphed into a traveling ensemble over time. We all play a string instrument. I play the viola; my oldest sister, Maggie, plays the cello; my younger brother and sister, Brigid and Tommy, both play the violin; and my youngest brother, Brendan, plays the viola. So, Maggie and I sat down one day and fished through all of the music we had in order to try and find a few pieces that would suit our wide array of skill levels (ages 7-18). We came across a book of simple classical numbers intended to be played by a quintet, and we rounded up the troops and held our first rehearsal.

It wasn’t long until we scheduled our first performance at the Norwell Knoll, an assisted living facility on the other side of town. When we arrived mid-day the director, Karen, greeted us outside the building and escorted us into the room where we would be playing. It was the first time the facility had had live music there. Karen said everyone was ready and waiting, and neither my siblings nor I had any idea of who or what to expect.

Walking into the room, we were welcomed by dozens of excited and rowdy residents. As my sister Maggie used to say when describing our “debut,” her first thought was, “How will they ever hear us?”

But something very different, very strange and very wonderful happened after we started playing. The room fell quiet, quiet enough to hear the vibrations of the strings, quiet enough to hear an older resident humming along in the back, quiet enough to even hear our own mistakes. And, that continued for 40 minutes until we finished.

The director and other staff members told us afterwards that they had never seen an “audience” there as quiet during a lunchtime event. The reaction we received that day prompted my older sister and me to focus our musical efforts on researching the possible impact of live music on cognition for individuals with Alzheimer’s disease.  It also served to deepen our relationship with AFA Teens, including holding an annual candle lighting ceremony as part of AFA’s annual National Commemorative Candle Lighting event.

As others look for a cure for Alzheimer’s disease, we’re doing our part to see if perhaps music may offer one building block toward improving quality of life for people with the disease.

What a Difference Spending a Few Hours with Someone with Alzheimer's Disease Can Make

 In this blog post by AFA Teens Advisory Board member, Barrett Cole, she addresses the growing Alzheimer's disease epidemic and calls on teens to make a difference by volunteering and spending a few hours with someone with the disease.

     
Alzheimer’s disease doesn’t just affect the people with the disease; it has a huge impact on their families, their friends and their communities.  It not only robs individuals of their cognitive abilities, but it steals time and energy from everyone involved.  With a growing aging community, Alzheimer’s disease continues to wreak havoc on those whose lives it affects.  As people live longer, and with no cure yet in sight, Alzheimer’s disease will have a huge impact not only on older generations but on younger generations as well. 

Alzheimer’s disease is a growing problem.  According to the Alzheimer’s Foundation of America (AFA), it is estimated that as many as 5.1 Americans may have Alzheimer’s disease.  

Current research from the National Institute of Aging (NIA) indicates that the prevalence of Alzheimer’s disease doubles every five years beyond age 65.  While deaths from other major health factors continue to drop in the United States, the number of deaths due to Alzheimer’s disease continues to increase.

            
With a disease like Alzheimer’s, for which there is no cure, one of the most important things that we can do as neighbors and communities is to give of our time and energy in helping people dealing with the disease and its insurmountable trials.

            
Alzheimer’s disease is not only emotionally draining, but it is financially draining.  It is estimated that one to four family members act as caregivers for each individual with Alzheimer’s disease, according to AFA.  The annual cost of caring for one individual with Alzheimer's disease ranges from nearly $18,500 to more than $36,000, depending on the stage of the disease, and the national tab for caring for individuals with Alzheimer’s disease is estimated at $100 billion annually.

"The demands of day-to-day care, changing family roles and difficult decisions about placement in care facilities can be extremely hard to handle," according to the NIA.  Community initiatives such as online and face-to-face support groups can be a lifeline to those dealing with these issues.

Volunteering to just visit someone with Alzheimer’s disease for as little as an hour can make a difference both for the caregiver and the individual with the disease.  Additionally, recent studies show that social engagement and mentally stimulating pursuits can help reduce the risk of cognitive decline and Alzheimer’s disease in particular. Take the time to go read a book or play a game with someone with Alzheimer’s disease.  Cook a meal.  Hold a conversation with an individual who spends most of the day alone taking care of a loved one.  Help educate members your community about this disease and risk factors.

            
Even one small act of kindness like this can mean the world to people affected by Alzheimer’s disease—and can reward you with meaningful experiences in the process.

               

How One Novel Shaped a Teen's Experience Volunteering in the Alzheimer's Community

In this latest post from AFA Teens Advisory Board Member Abril Resendiz, she reviews a novel entitled “Still Alice” and suggests how it has helped her as a volunteer at Alzheimer’s organizations. 

For the last several years, I have been volunteering at several different types of organizations, but nothing has had more of a colossal impact on me than volunteering at a care facility for individuals with Alzheimer’s disease.
     I began volunteering at a care facility near where I live in Texas during my freshman year of high school and from the moment I started there, I felt an inexplicable sensation. I soon realized that the people who I was talking to were cognitively impaired. And as a result, our conversations were rather circular. At first, I could not ascertain how to talk to the residents, but after a few visits I realized that the key was to engage them in a conversation in a way that was most meaningful for them.
     I formed such a strong connection with these residents that I felt I should learn more about their illness. I wanted to expand my knowledge of Alzheimer's disease to be able to interact with the residents in the most effective way possible.
     I read several books to further learn about the disease, and even though they guided me to understand the biology of the disease, I still remained unaware of how someone with Alzheimer’s disease would actually feel as the disease progresses. That is, until I came across the novel, “Still Alice,” written by first-time author Lisa Genova, who holds a Ph.D. in neuroscience from Harvard University.
     The novel is a compelling, heartbreaking and terrifying story about a 50-year-old woman named Alice Howland, who is a brilliant Harvard professor, wife and mother of three. The novel depicts her sudden descent into early-onset Alzheimer's disease and the impact that it has on her life. While most books about Alzheimer’s disease are written from the point of view of a clinician or other healthcare professional, “Still Alice” is written from the point of view of Alice, the person who actually has the disease. I believe that this literary approach makes the book that much more powerful.
     As Alice slowly starts to lose her cognitive abilities, the story becomes more difficult to follow. Yet, although the description of events as told from Alice’s perspective becomes less clear, mirroring the course of the disease, what is gained is much more powerful: You get to see the feelings of frustration, anxiety and turmoil that Alice experiences.
     I believe “Still Alice” is a compelling book that can help family and friends connect more effectively with their loved ones and better understand what they are going through.
     The insight I gained from the book has, no doubt, helped me become a better volunteer. One of the caregivers at the facility once told me that she saw me as a messenger—that through my visits, I was delivering joy into these residents’ lives. However, in reality, I see myself as the recipient of this joy, a joy that I believe I acquire each time I volunteer.