My Reasons to Care

In this entry, 17-year old Aliya Farmanali shares her experience with Alzheimer's disease and her motivation to get involved as a chapter president of AFA Teens in Las Vegas, NV. 

No one in my family has Alzheimer’s disease. That in itself is such a blessing; yet to some, it, therefore, may seem incongruous that I am the president of the AFA Teens Chapter at my school and the Alzheimer’s Awareness Club associated with it. I am sure people wonder, “Why are you involved with the Alzheimer’s cause if you have not been personally affected by the disease?”

But I have. Some of my grandparents’ closest friends have battled the disease, either as individuals diagnosed with Alzheimer’s or as caregivers supporting their loved ones. My parents run a small residential home for individuals with Alzheimer’s disease, and I treasure the companionship of the residents I meet there. I have friends whose families have dealt with Alzheimer’s disease, or who are curious to learn more about the disease itself. These are some of my connections to Alzheimer’s disease, and they stimulate me every day to continue to raise awareness of the disease and visualize a world in which there is a cure for Alzheimer’s there.

Every day I am reminded of why I joined the cause. Looking through my emails, I find my inbox filled with emails concerning Alzheimer’s disease (ongoing research, proposed legislation, and caregiving issues, to name a few). I receive magazines in the mail that discuss various aspects of Alzheimer’s disease, and I keep textbooks and novels on my bookshelf that illustrate the effects of the disease through detailed pictures of the brain, sweeping descriptions of potential causes and prevalent symptoms, and heartrending prose in a “third-person limited” point of view that offers a striking view on what life and thoughts might be like for a person with Alzheimer’s disease.

Perhaps the most poignant reminder for me is that more and more frequently, characters in television shows and books are depicted with Alzheimer’s disease. That Alzheimer’s disease is no longer being discussed just in documentaries and nonfiction books, but in fictional works, disturbs me. It disturbs me because its inclusion in storylines emphasizes just how prevalent and how brutal Alzheimer’s disease is. There is, however, a more positive side to this situation as well. The fact that Alzheimer’s is showing up in visual and literary works of many genres illustrates an increased awareness of the disease in the world today. Moreover, I find it inspiring that in some works of science fiction, the future holds a cure for Alzheimer’s disease. And even when the comments regarding Alzheimer’s disease are brief within the plotlines, they focus people’s attention on the disease.

Like cancer and diabetes, Alzheimer’s disease affects millions around the globe. Unlike these two diseases, right now, Alzheimer’s can neither be prevented nor cured. I raise awareness for Alzheimer’s disease because right now, it is my way of being a part of the solution to this problem.

A Fundraiser for Grandma

Paige McCoy, a high school senior from Warwick, R.I., held a fundraiser for Alzheimer’s disease in honor of her grandmother who passed away in May 2013 after her struggle with the disease. In a previous blog entry posted on January 15, 2014, Paige reflected on her relationship with her grandmother. In this installment, Paige reflects on her fundraising event and its impact.

When choosing the topic of my senior project, I knew that choosing Alzheimer’s disease would allow me to honor my grandmother whom I was very close with. I decided to add a second, voluntary aspect to my project by hosting an awareness event and fundraiser that would benefit the Alzheimer’s Foundation of America (AFA).

The event took place on the evening of October 26, 2013 at an armory in East Greenwich, R.I. The hall that I rented was very large, and the venue supplied many tables and chairs at no cost, which was absolutely outstanding. The room also had a stage where I could make a short speech and announce raffle winners.

It was important to me that the event included personal touches that my grandmother would love, so I incorporated her favorite color. Using a lavender and white color scheme for the invitations and the tablecloths allowed my grandmother’s presence to be felt.

 I charged an admission fee of $10 for adults and $5s for kids ages five to 13; children four and younger were free. Through the support of stores and businesses that made generous donations,  the event had had a wide variety of food, including  finger sandwiches, calzones, party pizza, cookies and brownies, and many types of beverages such as juice pouches, waters, coffee and soda.. I was also fortunate enough to receive 27 gift card and basket donations for raffle prizes.

Prior to my event, I decided that I wouldn’t prepare anything word for word to say during my speech because I wanted it to come from the heart. I started to tear up while I was talking about my grandma, but I also dedicated my speech to all of the other people with Alzheimer’s disease and their families. I mentioned some statistics about Alzheimer’s disease and talked about what AFA does to help people affected by the disease. I thanked my family, my friends, etc. At the end of the night, I made one more speech: I announced that we had raised $1,100 for AFA. And with this news, there was a standing ovation.

Growing Up With My Grandmother

Paige McCoy, a 17-year-old high school senior from Warwick, R.I., lost her grandmother, Frances Medeiros, to Alzheimer’s disease last May. In this blog entry, Paige reflects on her relationship with her grandmother and how she continues to feel her grandmother’s presence in her life.

To me, there is no bond that is greater than the one between a grandchild and his or her grandparents. In my family, the word grandparents is an understatement; I might as well call them parents because of the love, support and encouragement that they’ve given me in the last 17 years.

My relationship with my grandmother was a very special one. There is not one day that goes by that I don’t start my day with a glass of orange juice—a habit that she started when I was seven years old. She was everything that a grandmother should be. She came to every birthday party, my first communion, the father and daughter dances, and every dance recital.  She always had to be the one to hand her grandchildren their birthday and Christmas presents. She would swipe it right from my papa’s hand and say, “Here you go, honey bun!” Nothing could beat the overall positive vibe and warm embrace that came from my grandma.

She taught me many things in life. She taught me about the importance of religion. She taught me to have class. And she also taught me little things in life, like how to fold clothes. My grandma was an educational inspiration, having been the valedictorian of the first graduating class at Salve Regina University. My mother and uncles always tell me how great she was with words, that she could define any word she was asked about with a brief definition and always carried a small dictionary with her. I still keep that tiny dictionary in my jewelry box.  

Since my grandma passed away, there has not been one night where I don’t pray to her. I tell her how my day went, about a big test I have coming up, or about how stressed out I am about work, school, and college applications. I truly believe that she can hear me. One night, about three months after she passed away, I talked to her about my papa. I told her how depressed he was, and how seeing him so sad made me want to cry. I asked her to help him feel better.

A few days later, I was sitting at the kitchen table with my papa and my mom. All of a sudden, my papa’s face lit up, and he said to my mother, “I almost forgot to tell you, I had a dream about mama two nights ago!” He explained the dream, and how beautiful he thought she looked when all of a sudden it hit me: my grandma had heard me. That was such an emotional moment. I cried tears of joy, sadness and shock. I felt like I had talked to my grandma and I would never trade that feeling for anything in this world. I didn’t tell any of my family what happened, because I wanted it to be something that stayed between my grandma and me

I refuse to say goodbye. No distance or amount of time can break the bond between a granddaughter and her grandmother. Someone who nurtured you from the start does not just “go away.” I just had to change my perspective. Instead of driving to her house, now I just put my hands together and speak—and she’s all ears.  

Bullying Prevention Awareness Month: How Student Involvement May Be the Key

In honor of Bullying Prevention Awareness Month, Jessica Burke, event and volunteer coordinator at the Alzheimer's Foundation of America, discusses the importance of awareness and prevention of bullying. 

I feel compelled to reach out to our AFA Teens about an issue that impacts nearly 30 percent of adolescents in the United States: bullying. As you may know, Bullying Prevention Awareness Month just ended, in October, but this is a conversation that should continue year-round.

Bullying continues to be a widespread problem during school hours; after school hours at clubs, ball fields, community centers and even on one’s own residential block; and on the Internet. Whether a student is the victim of bullying, or is the bully, the act of bullying can have a profound impact. Effects include depression, anxiety, and increased substance use.

The good news is that research shows active engagement in extracurricular activities and community activism helps reduce one’s exposure to environments where bullying occurs. This involvement also develops leadership skills in students who are more likely to safely intervene if they witness the mistreatment of others.

Participation in an activity like AFA Teens aligns with this research. We hope that this encourages you to get involved even more and to spread the word about AFA Teens so that your friends, peers and classmates will also join our family. AFA also encourages you to talk with your family, friends and educators about this important topic so that, together, we can increase awareness and prevention of bullying.

For information on bullying signs, prevention and reporting, please visit http://www.stopbullying.gov/. 

Making a Difference One Person At a Time

In this blog post, Jessica Burke, event and volunteer coordinator at the Alzheimer's Foundation of America, reflects on the rewards of working with AFA and how one family caregiver showed her how important her role really is. 

I celebrated my three-month anniversary as the events and volunteer coordinator at the Alzheimer’s Foundation of America (AFA) on August 15, 2013. On my subway ride home to Brooklyn, N.Y., that night, I found myself reflecting on my new position and what it means to be part of the AFA family.

In the summer of 2001, I began working with college students who reside in campus housing. I worked my way over the years through the ranks, from an undergraduate resident assistant, to a graduate assistant and then to the professional position of resident director. What I most enjoyed about working with college students was the ability to impact their college experience and watch them grow from freshmen to accomplished student leaders on their graduation day.   

When I accepted my position at AFA – a role that includes overseeing AFA Teens and AFA on Campus, I was happy that I would be able to continue the student interaction that I had grown to appreciate. But, with my responsibilities also involving contact with individuals with dementia, adult caregivers and other clients, I underestimated the impact that working with a different population would have on me. In my first month of employment, AFA hosted its annual conference for family caregivers and healthcare professionals. From the time that I began registering family members to attend the conference, I knew that this would be different.  

One woman who I will always remember shared with me that she has been the sole caregiver for her husband of more than 30 years. Her call to register for the conference turned into a 15-minute conversation about their relationship, the challenges she faces on a daily basis, and even some advice that she had for me as a newlywed. She thanked me profusely for the support AFA has given her over the years. And, when we hung up, the tears in my eyes were proof that this job was going to be an experience I will never forget.

What I suspect is that, if you are reading this, you are also someone who wants to make a difference in the lives of people impacted by Alzheimer’s disease. You may not know where to start, but that is where I come in. I want to help you feel the same sense of meaning that I felt that day, and continue to feel each time I interact with a caregiver or individual with Alzheimer’s disease.

Whether you choose to start a chapter of AFA Teens or AFA on Campus, volunteer at a local senior center or long-term care residence, host an educational or awareness program, or participate in one of many online activities available to visitors to AFA Teens and AFA on Campus – I’ll be here to guide you.

If you’re ready to join the AFA family and participate in our cause, contact me at 866-232-8484 or jburke@alzfdn.org. I look forward to working together this coming academic year!

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.