Rallying Around Alzheimer's Awareness

Tuesday, January 8, 2013

Rallying Around Alzheimer’s Awareness

           In this blog post, Victoria Aramini, president of the AFA on Campus chapter at the College of the Holy Cross in Worcester, MA, relays how college students pulled together to raise awareness of Alzheimer’s disease—and found out that we’re all in this together.

If students and faculty at the College of the Holy Cross were not aware of Alzheimer’s disease before, they are now!

This past November, 20 students and I worked to execute the College of the Holy Cross’s first annual Alzheimer’s Awareness Day. This day marked the inaugural event held by the college’s AFA on Campus chapter, which I started a chapter at Holy Cross this fall.   AFA on Campus collaborated with three different groups on campus: SHAPE (Student Health Awareness Peer Educators), which promotes responsible decisions regarding health; COPE (Counseling Outreach Peer Educators), which strives to increase students’ awareness of mental health issues; and SPUD (Student Programs for Urban Development), whose mission is to improve social conditions of individuals in our surrounding area of Worcester, MA.

This project was extremely important to me. In August, I lost my grandmother (or Nonna, as we call her in Italian). Nonna had Alzheimer’s disease for years, and I cannot even begin to describe the pain I felt as the disease took over her body. I watched my mom and grandfather, my nonna’s primary caregivers, take care of her day in and day out. It made me angry that she appeared so helpless. I was mad Nonna forgot who I was. I was upset that the disease existed.

All of these feelings made me want to do something—and that’s how the first Alzheimer’s Awareness Day at Holy Cross came about.

Our campus chapter met several times prior to the actual day of the event. At our meetings, we brainstormed goals and tactics, and shared our personal stories related to Alzheimer’s disease with each other. We all realized that each of us was not the only one who had a loved one with the disease. It helped us connect with each other, motivate each other and successfully act together to raise awareness of Alzheimer’s disease.

We advertised the event with flyers, a mass e-mail that was sent out to the student body, and coffee sleeves that were labeled with stickers with information about the event.

On the actual day of the event, we hung balloons in our main campus center with facts about Alzheimer’s disease hanging from the bottom of the strings. For six hours, we staffed a table in the campus center, speaking to students and faculty and handing out educational materials. The information, which was provided by the Alzheimer’s Foundation of America (AFA), explained the disease, caregiving techniques and ways to promote a healthy brain lifestyle. We also had a copy of the “STOP Alzheimer’s” petition for students to read over and sign. In total,, we collected more than 300 signatures!

The day was surely a success; the overall turnout was great, but the relationships we made were even better. When people who had a personal connection with the disease came by to sign the petition, they pulled either me or a member of the team aside and shared their experiences. People wanted to talk about how horrible the disease is and how their own lives had been affected by it. We received a lot of positive feedback after the event was over, including many people who congratulated our team for bringing a rarely-discussed topic to the front burner.

This is definitely a project that the Holy Cross community wishes to be a part of in the future, and hopefully that means the Alzheimer’s Awareness Day will be a tradition at Holy Cross!

 

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.

Lessons Learned from Understanding Her Abuelita's Alzheimer's Disease

In this blog entry from AFA Teens Advisory Board Member Melissa Stepovich, she describes the lessons she has learned as she tries to understand her abuelita's Alzheimer's disease, and the various stages she must go through as the disease progresses.  

Alzheimer’s disease is not only a disease that affects memory, it is a disease that affects different aspects of a person’s life through changes in personality and behavior.  I have seen these changes in my abuelita (grandma), who was diagnosed with Alzheimer’s disease in 2003. 

     By being with my abuelita, I have learned several things.  First, I have learned that patience is very important when being in the presence of my abuelita or anyone who has Alzheimer’s disease.  Having patience allows me to deal with whatever mood my abuelita is in that day.      

    There are, in general, three stages of Alzheimer’s disease: the mild stage, the moderate stage and the severe stage.  Symptoms of the mild stage include becoming confused in familiar places, taking a longer time than usual to finish regular daily tasks, and minor mood changes.  These symptoms are frequently confused with changes that occur when someone ages. Problems recognizing family and friends, intensified memory loss, and repeating stories or motions are the indications of the moderate stage.  In the severe stage of Alzheimer’s disease, a full-time caregiver is often needed to assist with all daily activities, such as eating, going to the bathroom, and getting dressed.

     Unfortunately, my abuelita is in the severe stage of Alzheimer’s disease.  The severe stage requires me to pay close attention to my actions around her. Her mood and personality greatly fluctuate.  A simple smile could make her very happy or it could make her very angry because she thinks you are laughing at her.  

     Overall, I have acquired a deeper level of patience and love for my abuelita.  Even though I know she will never be the same, I have learned ways to cherish every moment I have with her.

Coping with Her Grandfather's Alzheimer's Disease and Lessons Learned from "The 36-Hour Day"

In this blog post from AFA Teens Advisory Board Member  Emmy Prothro she explains the important lessons she learned about caregiving and particularly those from reading "The 36-hour day" and how they benefited her interactions with her grandfather who had Alzheimer's disease. 
      It has been eight years since my grandfather was diagnosed with Alzheimer’s disease.  We have been very lucky that his illness has progressed gradually over that time.  

      As I look back over the past few years, it makes me happy that I can remember the days when everything was normal at Maw Maw and Paw Paw’s house. Paw Paw used to sit and sing with us for hours.  He would tease us and make us laugh.  He always had time for us. So as his disease has gone from forgetfulness to almost total disability, I have tried to give back to him my gift of time. 

     The hardest thing for him is letting people help him.  I have learned to be more compassionate and patient with Paw Paw.  I always give him a kiss when I leave, and I tell him I love him.  Sometimes he will still say, “I love you too.”  I have learned to cherish those moments. 

     This past summer, I read the book “The 36-Hour Day" a family guide for caring for persons with Alzheimer disease by Nancy L. Mace and Peter V. Rabins. As I read this book, I not only began to understand the illness better, but I also began to understand what my grandmother has gone through as Paw Paw’s only caregiver during the past eight years, until a few weeks ago when Paw Paw had to go to a rehabilitation hospital. He had become completely dependent upon her for everything, from getting dressed to eating to going out in public. She has done it all. She is my hero.

     In reading, “The 36-Hour Day,” I also learned ways to communicate with my grandfather as he slips away more and more each day. Remaining calm, smiling, holding his hand and looking directly at him when I speak are all ways to communicate with him nonverbally.

     As I learned from the book—and in real life, when someone in your family is facing a disease that involves memory loss, it is challenging for the family as well as the person who has the disease. All of us try to help Maw Maw out as much as we can. We have all adapted to Paw Paw and his needs.  The most we can do is keep his life as stable and familiar as possible.  Although I cannot change what my grandfather is going through, I have realized how my family can better deal with his disease and be more compassionate toward all of my family members who have been affected by it.  

     Editor's Note: Emmy's grandfather recently passed away on September 9, 2011. Emmy notes: "I am glad that I had him in my life for 18 years."

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.

               

The Residual Power of Music

 In this blog post, AFA Teens Advisory Board member, Liz Pires speaks to the residual power of music, its ability to heal, and how we can help use music to improve quality of life for people with Alzheimer's disease. 
 
It is generally acknowledged that music elevates mood, soothes fear and tension, and solidifies relationships. So how can it heal as well?

Neurologist Frank R. Wilson, who is an internationally respected, Pulitzer Prize nominated-author, labels music one of the hallmarks of humanity (Hodges 17). While most people are neither bestowed with the gift of musical ability nor the ear to distinguish between sharp and flat tones, every human being has the capacity to appreciate and experience music.

People with all types of disabilities are able to understand and enjoy music in a way that fascinates many doctors and scientists – and why is this?

The residual power of music…

Several years ago, an article in Wall Street Journal included information about a 28-year-old man in the Bronx, NY whose recovery from a stroke was helped along by music. The reggae and rap that emanated from his borrowed iPod aided him in walking again (Beck), emphasizing that music has an incredible healing power that is, mostly, indescribable.

In an article in The Wall Street Journal, Concetta Tomaino, D.A, the executive director of the Institute for Music and Neurologic Function, in the Bronx, NY, describes  music as "engaging very basic mechanisms of emotions and listening…stimulating dormant areas of the brain that haven't been accessible due to degenerative disease."  The institute’s internationally recognized programs use music therapy to assist the "awakening and healing" of individuals with various neurological conditions, including Alzheimer’s disease.

  

I’ve found that music’s click of familiarity possesses a calming feeling, a sense of home for anyone and everyone. Just as our skin feels warm and our head begins to gently bob to the sound of a favorite song slowly making its entrance, an individual with Alzheimer’s disease may be able to do the same. The process of measuring an individual’s ability to react to familiar music can be unreliable; however, music still has a charming, undeniable force. The rush of music can call up distilled memories or just feel recognizable, like warm water trickling into a tired, dry plant. It’s nourishment.

I urge others to explore the magic of rhythm and beat in the face of the devastation of Alzheimer’s disease. One idea that I find to hold colossal potential and requires little effort is an organized music drive to benefit people with Alzheimer’s disease. In every way possible—from stopping by garage sales to asking storeowners, friends and neighbors, collect used and new iPods, CD players, CDs and cassettes to donate to organizations with programs for people with Alzheimer’s disease.  Or better yet, to make this drive even more impactful, find out what types of music the residents have enjoyed in the past and try to collect those songs. In addition, you can find individuals or groups to perform familiar music at senior centers or care facilities.

Easy. With those simple acts, you can make an immense impact on many peoples’ lives and simultaneously involve the community, which would also help raise awareness of the disease.   

Hodges, Donald A. "Implications of Music and Brain Research." Special Focus. Music     Educators Journal, Sept. 2000. Web.

Beck, Melinda. "IPod Therapy for Alzheimer's Patients - WSJ.com." Business News & Financial News - The Wall Street Journal - Wsj.com. 16 Nov. 2009. Web.

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.