Tuesday, August 17, 2010

What You Should Do to Support Your Relative

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.

Friday, July 2, 2010

Music and Alzheimer's Disease

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.

Monday, June 21, 2010

Tabula Rasa

In 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.

Thursday, May 27, 2010

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."

Friday, April 23, 2010

The Power of Purpose

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