AFA Teens and AFA on Campus Blogs

The Power of Music To Make an Impact

2011-11-11T12:47:00.000-08:00

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

2011-10-20T13:21:00.000-07:00

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"

2011-10-13T10:28:00.000-07:00

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

2011-10-05T11:02:00.000-07:00

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

2011-08-12T10:30:00.000-07:00

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

2011-07-21T10:52:00.000-07:00

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.

How to Overcome the Loss of Communication Caused by Alzheimer's Disease

2011-07-12T07:09:00.000-07:00

In this latest post from the AFA Teens Blog, 2011 AFA Teens Advisory Board member, Chris Schloss provides meaningful suggestions on how to overcome the loss of communication caused by Alzheimer's disease.

One of the many frustrating aspects of coping with loved ones affected by Alzheimer’s disease is the loss of communication. More than likely, over time, the disease strips people of their ability to remember words, communicate thoughts and even to understand the life stories you might want to share with them. This limited communication is a fact that many caregivers find hard to accept.

But, in order to move forward through this sad period, caregivers can make the most out of the time they have with loved ones with the disease by cherishing the precious moments that remain. If a caregiver can proceed to this step, he or she might ask many questions: “How do I make the most out of our remaining time?”, “How can we still communicate if I can’t tell him/her anything?”, and “How can I get help?” Both my grandmas currently have or had Alzheimer’s disease or another form of dementia. Only one is still here for me now, and I am facing these types of questions as my relationship with her continues to change as a result of her illness.

Now, whenever I tell my grandma anything pertaining to my personal life, it’s hard to believe that it will only entertain her for a few brief moments at most. Lately, it has escalated to the point where we hardly speak because of the pandemonium.

I have discovered that the most successful way to bring her to a calm state is simply to reminisce with her over her childhood memories or engage her in discussion about the things that she enjoys.

Once, during a stretch of long, chaotic days, my sisters and I brought over our black lab. This acted like a quick remedy for happiness; I hadn’t seen her that happy for months. She didn’t stop smiling, laughing and petting the loving dog, and my sisters and I saw a glimpse of how we remembered her a few years prior. Another time, when, things went bad, my mom and I took the advice of another AFA Teens advisory board member and played Puerto Rican Christmas music for her, even though the holiday season was nowhere near. Again, she was ebullient because she still remembered the memories of the carols.

The most important factor in keeping a loved one relaxed and sociable is to make the person feel as comfortable as possible, at all costs. Sometimes, when all else fails, just sitting quietly and holding the person’s hand is the best way to connect. Making the most out of the time you have with a loved one with Alzheimer’s disease isn’t necessarily figuring out how to communicate your own personal life, but rather stepping back and enjoying being in the moment.

How "Mannies for Grannies" is Utilizing the Power of Touch to Aid People with Alzheimer's Disease

2011-06-28T10:26:00.000-07:00

In this blog post by 2011 AFA Teens Advisory Board member Lexi Gray, learn about the importance of touch for people with Alzheimer's disease and how she is truly making a difference with her service organization, "Mannies for Grannies."

The power of touch is a subject that has been studied for decades. Newborns, for example, need human touch because it helps them feel the same sense of security that they felt inside their mothers’ womb. Studies have shown that babies who are not touched can suffer from health problems, including failure to thrive, poor immune systems and even brain damage. Children in orphanages are often not held or touched enough, and are sometimes afflicted with “severe social problems.” In some extreme cases, children’s deaths have been linked to lack of touch.

These studies are prime examples of how important touch really is to the human race. While not quite as detrimental as the lack of touch for newborns, the need for touch for older adults is very strong as well. Adults are known to lead happier, healthier lives when they receive loving touch from others on a regular basis.

Unfortunately, for people afflicted with Alzheimer’s disease, they often receive too few visitors and limited human interaction.

Realizing this inspired me to start an organization called “Mannies for Grannies.” Through “Mannies for Grannies,” I take a small group of middle and high school aged girls to a nearby nursing home to give manicures and hand massages to the residents with Alzheimer’s disease.

And although we are not professional manicurists, the residents really do seem to benefit from our visit. I believe this may simply be because they are receiving the attention they need and deserve from others. So our visits are really not about how great their nails look after we are finished, but instead, it’s about how our visits make the ladies feel on the inside after they have received human interaction and touch.

I know that perhaps the residents do not remember our visits soon after we leave and I know that giving the residents manicures and hand massages will not cure their disease. However, my hope is that it does enhance their lives in a positive way.

So if someone close to you has Alzheimer’s disease, remember to hug and use touch with them often. And if you are so inspired, you can also start a service organization that brings the power of touch to those who are often forgotten.

Editor’s Note: For more information on how to “Tap the Power of Touch,” check out the Fall 2010 issue of care ADvantage magazine, AFA’s quarterly publication for caregivers of individuals with Alzheimer’s disease and related illnesses.

What Athletes Show Know About Contact Sports and Brain Injury

2011-01-21T07:21:00.000-08:00

In this post by Michael Powers, a graduate student at Boston University and former football player for the University of Pennsylvania, read what athletes should know about contact sports and brain injury.

Many of you may have seen the news about dementia in athletes who played contact sports. The condition gaining most of the attention is called chronic traumatic encephalopathy (CTE). For those of you who play contact sports such as football, soccer, lacrosse or hockey, hearing repeated stories of athletes developing dementia can be frightening.

After playing college football and taking thousands of hits to the head, I am very concerned about my health and the health of my teammates. The recent news of a college player suffering from brain damage hit particularly close to home because we played for the same school.

The best way to deal with this sort of fear is to educate oneself, which is why I have done extensive research on the subject. I wanted to find out the truth about dementia in athletes and share it with other athletes.

Here are the key facts that I have found:

1. Although certain types of brain changes, called neurofibrillary tangles, have been described in some athletes, there is no conclusive evidence that playing contact sports, even boxing, increases your overall risk of developing dementia.

2. There is no conclusive data to firmly show that contact sports cause CTE because the number of examined brains is small. In many of the athletes with CTE had other risk factors for dementia, such as blood vessel disease.

3. Concussions are dangerous and should be taken seriously. Repeated concussions can do serious long-term damage to your brain.

I do not want to minimize the significance of brain trauma in sports; rather, I want to emphasize the known risk of concussions. Many concussions in sports go unreported because athletes feel pressured, often by their own sense of loyalty to the team, to play through the pain. However, playing through a concussion may be dangerous because concussions may cause temporary chemical changes in the brain that make it susceptible to permanent damage.

I encourage you and your family to read the information on the AFA Teens Web Site about how athletes can protect themselves from sports-related head injuries.

What You Should Do to Support Your Relative

2010-08-17T10:49:00.000-07:00

In this latest post from an AFA Teens Advisory Board Member, Andrew Hsu explains what you should do to support your relative who has dementia from a teens perspective.

When we are young, our parents are supposed to take care of us. From the time we were born, even to now, our parents, if we are lucky, are always supporting us physically, financially, emotionally and in many other ways.

We’re kids. We’re supposed to be carefree, or at the very least, mind our own business. Anything that was not school related and was confusing was automatically tossed to our parents to deal with. They’re the adults and we’ve pretty much ingrained in our minds that they would forever be the ones who would take care of us; that they would be the ones to solve all the problems; that they are all-powerful.

At least that’s what I thought when I was growing up. Now that I’m transitioning into adulthood, the experience is surreal. The adults in my life are getting older, and I’m starting to realize that my parents and other relatives are like any other human beings. They get old, too, and now, the fact of our elders getting sick, getting older and dying is suddenly becoming more and more real.

When a relative has Alzheimer’s disease, you need to assure the relative that he or she has your support. The person will be less and less able to think and organize his or her thoughts in order to communicate, so you have to be very patient and understanding. Don’t be disappointed if your relative is having trouble recognizing you. It’s not because he or she doesn’t love you anymore. It’s simply because he or she is unable to recognize you. Don’t get frustrated, and be sure to visit often. Don’t interrupt when the relative is trying to speak because it will cause everyone to be frustrated and that’s not what we ultimately want.

In supporting your relative, it’s also important to understand that they often need the familiarity and repetition in their lives in order to minimize confusion and disorientation. Don’t be afraid to repeat what you just said because, with the person’s short-term memory loss, your relative might ask the same questions over and over again and you might have to repeat your answers.

The best thing to do is to always be understanding of your relative and always be patient, no matter what the circumstances. Although it may be challenging trying to communicate with your relative, always do your best. Now is the time to be as loving as possible. Do the best you can and always adjust! Hopefully, this helps with ways to support your relative in the event that he or she does end up being diagnosed with Alzheimer’s disease.

Music and Alzheimer's Disease

2010-07-02T09:55:00.000-07:00

In this latest post by an AFA Teens Advisory Board Member, read what Robbie Hynes thinks are the benefits of music therapy for people with Alzheimer's disease and why it's important for teens to form intergenerational connections.

Like many other teens, Alzheimer’s disease has had a significant impact on my life. My grandfather was diagnosed with Alzheimer’s disease seven years ago, and I have witnessed first-hand the effects that this disease has on families. When I was in elementary school I looked forward to visits from my grandfather a few times a year. In recent years, however, I have only been able to see him a handful of times. When I speak with him on the phone I sometimes feel as if I’m not even speaking with my grandfather anymore. It is a struggle to maintain a conversation since he will address me by different names, and I can sense the increasing difficulty he has putting cogent thoughts together. I find myself having to remind him about my life when I talk to him in order to carry on the conversation, and this has made me very sad. When I first became aware of his condition, I did not understand how over the span of a few years, my grandfather, who has known me my entire life, could forget almost everything about me.

Then, a few years ago, when my older sister was doing research on the positive impact live music might have on those living with Alzheimer’s disease she introduced me to AFA Teens. My family was very excited when we found this organization and wanted to find a way in which we could help contribute to its cause. AFA Teens is an organization that by virtue of its very existence provides a “home base” for families and specifically young members of those families who have a relative with Alzheimer’s disease. One avenue we have used to attempt to “connect” with individuals with the disease is tied directly to one of my family’s major interests: music. Music has played an important role in all of our lives, and we were fortunate to find a way in which we could help raise awareness for Alzheimer’s disease and have a fun time doing it. My siblings and I first formed a quartet and later a quintet that consists of two violas, two violins and a cello. We began to contact local nursing homes and assisted living centers and volunteered to come and play our music for their residents. Many of the residents at these facilities are affected by Alzheimer’s disease, and our goal was to observe how they would react to the music. It was astonishing to realize how much of an impact our music actually had on many of these people. We were even more surprised at how thankful the residents and staff were that we took the time to visit.

Our first concert was at a nursing home in our town, and we had put together a program of five songs to play. As we unpacked our instruments and prepared for the performance, the crowd of elderly people was quite loud and talkative. I distinctly remember a person in the audience shouting at me to ask when we were going to start. Prior to the concert, the head of the nursing home had informed us that many of the residents had Alzheimer’s disease and that they could be loud and restless. So, we were not entirely surprised by the initial reaction when we first arrived. Then, we introduced ourselves and began to play our first song. As we began to play, a silence fell over the crowd; all you could hear was the ringing sound of string instruments. This caught me entirely off guard, and it was clear to me that our music was acting as a sort of therapy for the residents. I was very excited by this because now we were not only doing something we enjoyed to help raise awareness for Alzheimer’s disease, but our music was acting as a way to soothe people affected by the disease.

Just a couple of months ago I saw my grandfather for the first time in a few years, and he insisted that I play my music for him. I was very curious to see if he would react just like the people at the nursing homes have—and he did. As I played, I sporadically glanced over at him to see him sitting there mesmerized by the music. It was a very rare occasion to see my grandfather able to sit down and concentrate on one thing for more than a few minutes, and I felt very proud of myself that I was able to provide a temporary respite from the disease for those 10 minutes during which I played that day.

But there is more work that can be done to make lives better for both people with Alzheimer’s disease and their families. Even though all of us do not play music, perhaps there are other modes of interaction that can help people in assisted living facilities. . Just as one of our family’s concerts breaks the monotony of the day-to-day routine, perhaps getting more young people involved in visiting these centers might also be beneficial. In a day and age when everyone’s schedule seems stretched to the max, maybe it is time for teens to step back and assess what they can do, what they can personally do, to help make things better.

AFA Teens has created a forum for young people to exchange experiences and possible solutions for the myriad problems facing families dealing with Alzheimer’s disease. However, taking full advantage of that forum requires all of us to take the first step, take the initiative, and make an effort to bring what can be a positive vision to life. Our older population will continue to grow over the coming years; so will the number of individuals (and families) coming to terms with Alzheimer’s disease. Hopefully the number of teens willing to step up and become involved will grow as well.

Tabula Rasa

2010-06-21T11:31:00.000-07:00

lIn the latest blog by an AFA Teens Advisory Board member, hear why Megan Parsons thinks information about Alzheimer's disease is relevant to her generation.

According to John Locke, humans are born a moral blank slate – a tabula rasa. Sensory experiences differentiate us after birth, and mold us into who we are as adults.

I think the idea of a tabula rasa is interesting, but perhaps not entirely correct.

We interact with our environment in a reciprocal relationship: we change our environment through our actions, and our environment acts to physically alter us. But what does this mean? The first statement is rather obvious; our decisions have consequences on our environment, relationships, and other people’s perceptions of their own environment. The second statement, that our environment acts on us physically, has definite scientific underpinnings. Circumstance is able to alter the manifestation of our very DNA – altering gene expression throughout our lifetime – and causes our very person, body and mind, to reflect our experiences.

With current advancements in medicine, the average human life expectancy is increasing. (The U.S. Census Bureau projects that 241,000 Americans will be centenarians by 2020.) Because a primary risk factor of Alzheimer’s disease is age, the prevalence of the disease will increase as life expectancy increases. As teenagers living in the 21st century, we may face challenges reminding us that Alzheimer’s disease is a rising epidemic.

When a grandparent is diagnosed with Alzheimer’s disease, we are often deeply affected, as we’ve seen with Chris in the previous entry. It’s a frightening diagnosis, and many teens find themselves left with many questions, including, “Is my parent next?” For some people, it’s a reality rooted in our DNA; a few genes may boost susceptibility, but having these genes does not mean that a person will definitely develop the disease. It is only natural that we begin wondering about our own futures.

There are however, lifestyle choices that we can be made starting at any age, which can promote successful aging and overall good health. Exercising regularly to improve cardiovascular health, eating plenty of fruits and vegetables (and getting those omega-3s!), and maintaining a socially active lifestyle, may contribute to better cognitive performance throughout life and may reduce our risk of Alzheimer’s disease. Oh, and maybe have a cup of coffee with that morning crossword puzzle. Doing a bit of research and instituting some lifestyle changes now may make a world of difference later.

Given our family histories, many of us may wish for nothing more than a tabula rasa. But research shows that taking steps towards a healthier lifestyle—even as a teenager—is one of the best things you can do for your body and your brain, and research for treatments is ongoing.

2010-05-27T12:31:00.000-07:00

AFA Teens has invited its teen advisory board members to share their own experiences through the AFA Teens Blog. Our hope is that other teens gain a new perspective on what it’s like living with a relative with Alzheimer’s disease and/or raising awareness of the brain disorder in their communities. Here, Chris Schloss shares his thoughts. Please take a look at what Chris has to say and, as always, we encourage you to comment.

"When I was eight years old, my grandmother was diagnosed with Alzheimer’s disease. At the time, I didn’t know what Alzheimer’s disease was. I just noticed the way my grandmother acted, and it wasn’t the same. I thought it was kind of comical; I don’t remember anyone telling me there was something wrong. As I got older, I noticed things were different.

I would go to my grandmother’s apartment when I was little. She was the nicest person, and she loved doing things for me. It made her so happy to give her eight-year-old grandson a cookie, and I always took the offer. She wouldn’t ask just a single time, but continuously, forgetting that I had already eaten five cookies. I thought it was funny, but I didn’t know that she wasn’t kidding.

Things weren’t bad at first; this was just the start. We would go to her apartment after church, and she would ask my sisters and me the same question: “Who said the Mass today?” We thought it was funny, and we would smile. Then one of us would give her an answer, and she would ask the same question a few minutes later.

As I got older, the disease progressed. She rarely left her apartment, but she came to my house for the last time on Easter when I was in the 8th grade. I had just registered for high school, and I was wearing a shirt for my soon-to-be school. She asked me if that was the school I was attending, and she did this five times in five minutes. I no longer found any amusement in her actions, and I went into my room and put on a plain white T-shirt. This brought no attention, and I was starting to understand what was wrong.

I would visit her apartment, and she would always wish that she had a cookie for me because she no longer went to the grocery store. I would always smile and say that I was fine. She would ask who did my teeth. It was then that I knew things would probably never get better— her son, my dad, is a dentist. She forgot my sisters’ and my name, and she did this with many other things.

When I would go to her apartment with my family, she would talk to us, though many times we didn’t make much progress. She would get confused and talk about things irrelevant to the subject. By the end, we would go to her apartment and just sit with her, talking at a minimum. I knew she liked to be with me, so I made the most of my visits. She loved my family’s presence, and this was one of her favorite things. My grandmother passed away last September.

How do you explain Alzheimer’s disease to an eight-year-old? How do you explain it to any child? It’s hard to understand the disease at any age, and it is always hard to watch your beloved forget who you are."

The Power of Purpose

2010-04-23T06:15:00.000-07:00

We quickly move from graduation to graduation with big goals in mind. Do well on the SATs, get accepted to our top college, complete a major, qualify for an internship, and find a job. These goals motivate us to succeed and inspire us to do better, learn more, and work hard with each passing day. But zoom ahead three years following college graduation, well into your career and you find yourself in my position. My passion for my work has always been insurmountable, but when I went home each day to my apartment I lacked any definite goals in my personal life--a goal that would have me jumping out of bed early mornings on weekends and motivate me to push myself to succeed in some yet undefined way.

Then, one day early last November, the sixth month of my slump from running, I awoke early and walked through my neighborhood to observe runners participating in the New York City marathon. Watching the many runners among them running for a cause, a lost loved one, or a personal goal to restore their health, inspired me to take the next step in a sport that for me was losing its attraction. I found out that I could run 10 races in 2010 and qualify for a marathon in 2011, and it was in knowing this that I was able to step up my running, set short and long-term goals, and rediscover my love for something that has always given me confidence and perspective.

When I recently read a study in the Archives of General Psychiatry about purpose, I was able to gain insight on what I had discovered last November. According to the study, older adults with a strong sense of purpose were less likely to develop Alzheimer’s disease or mild cognitive impairment. I reflected on my own search for purpose and at once realized the challenge of continuing to find something that drives you each day—from post-college through years after retiring. I admired the seniors who continued to draw upon inspiration from a hobby that both challenges them and improves their well-being.

It seemed to make so much sense to me. I realized that having a purpose is so deeply connected to many of the things recommended by doctors to improve cognitive health, such as diet, exercise and socialization. If someone enjoys dancing, they are likely up on their feet and interacting with others. If someone enjoys cooking, they will often eat freshly prepared foods and take time with friends and family. My own purpose has led me to eat healthier, exercise more and run socially.

What always seems to be the common factor among research is that regardless of your age, it is important to keep finding something that motivates and drives you. We continue to admire our teen advocates who find a variety of ways to honor loved ones and give back to the Alzheimer’s community, whether through research, volunteering, holding awareness-raising rallies at their school, or being there for loved ones in a time of need, with such a strong sense of passion and devotion.

While no research is definitive, I feel confident that with finding a sense of purpose I have given great meaning to each day, and as I complete personal milestones, I feel prepared to overcome each new obstacle.

- Jessie McHeffey, AFA Teens Coordinator, Alzheimer's Foundation of America