The Alzheimer’s Association of Colorado is proud to announce Oh Say Can You Sing to End Alzheimer’s, a talent search for a volunteer vocalist to sing the National Anthem at the 2015 Denver Walk to End Alzheimer’s. More than 10,000 Coloradans are expected to walk the morning of September 19 at Denver City Park to raise awareness and funds to end Alzheimer’s.
The 2014 Denver Walk to End Alzheimer’s was the fourth largest in the United States and raised more than one million dollars to advance research and provide support to the more than 65,000 Coloradans living with the Alzheimer’s and their caregivers.
To audition for this high profile performance opportunity, please submit a YouTube video of you singing the national anthem a cappella to Jordan Ambron, firstname.lastname@example.org, by Noon MTN on August 26, 2015.
The winner must be available to arrive at Denver City Park no later than 8:00 am the morning of Saturday, September 19 to perform at the Opening Ceremony of the 2015 Walk to End Alzheimer’s. The winner will be announced on September 8, 2015.
Fussell started his incredible cross-country journey on November 4, 2014 from Tybee Island in his home state of Georgia, and he will be finishing the trek in Monterey, California. Currently, Fussell is racing across Colorado. This ‘regular guy’ covers an impressive 20-25 miles each day, inspiring and educating those he meets along the way, and changing the lives of people affected by the disease one step at a time.
But his journey isn’t just about completing the physical challenge. Talking to as many people as possible about the disease is one of his most important goals. “Every 67 seconds, a diagnosis of Alzheimer’s is made,” he said. “This disease is devastating…and not just for the people living with the disease, also for their caregivers.”
In 2000, Fussell lost his father to Alzheimer’s disease. His father came from a family of 12 siblings, seven of whom died of the disease. Faced with the loss of his father and a personal health scare, Fussell was inspired to reevaluate his life. He lost 100 pounds and made it his new mission to raise awareness of Alzheimer’s disease by trekking across the country.
His campaign, “Across the Land, raising awareness one step at a time” has been featured in hundreds of media outlets across the country and has enabled him to meet four governors as well as countless people affected by the disease. “I’ve spent about 55 nights in Alzheimer’s units talking to patients and caregivers. These special experiences are life changing and remind me that I need to keep going forward with our mission.”
Although his journey is physically and emotionally draining, Fussell is constantly inspired by the many brave people he meets that are either affected by the disease or working towards finding a cure. “I feel like the luckiest guy in the world to be able to do this.” But he stresses that so much work needs to be done in terms of legislation and funding. “It is shocking how little funding is provided for this disease – people can help by talking to their lawmakers and demanding change.”
Fussell said his trek doesn’t exactly have a set-in-stone plan. He usually just travels wherever there is an Alzheimer’s Association chapter. Fussell also wants to raise awareness of the network that is available to inform and support anyone touched by Alzheimer’s. “People can call 800-272-3900 to reach a 24-hour-a-day help line that has counselors for caregivers or anyone concerned about the illness,” he said.
My Grandma, Charlotte Barrett, passed away in 2007 after nearly 13 years of living with Alzheimer’s disease. I remember the day when I saw my dad, Miles Barrett, after he had just heard the news about his mother. At the time, I was just a young teenager and didn’t know anything about the disease or what my Grandma’s future held. What I do remember is that I had never in my life seen my Dad so devastated and I feared for what I was about to learn.
Looking back, I don’t remember much about my Grandma before she began living with Alzheimer’s. However, my memories with her are all distinctly filled with fun and laughter. Dancing around to the player piano at their house in Littleton – Laughing at my new favorite movie “Dumb & Dumber” – Skiing the slopes of Breckenridge. She was the type of person who always wore a smile and was loved by everyone who knew her. During her later years, I particularly remember how greatly music would lift her spirits. When she heard a song that triggered her memory, she would light up and sometimes even laugh; much like how I now feel when I hear songs that take me back to the days of dancing around their player piano. The gift of memory is truly something special.
I couldn’t write this without talking about how strong and supportive our family was throughout these years; in particular, about my Grandpa (whom I was named after). Grandpa took care of Grandma as long as he could before getting professional help. Even then, Grandpa visited Grandma for years on a daily basis. Taking her on walks, to the movies or just listening to some of their favorite tunes. His love and support never grew thin. Grandpa partnered with the Alzheimer’s Association for support and was heavily involved with them through the years.
One thing my Grandpa taught me was the importance of giving back. Every year, I make it a priority to start a team and participate in the annual Walk to End Alzheimer’s. It’s a fun way to raise money for the association, and is turning into a tradition of mine. I’ve also helped provide the large banners and signs for the Association’s events through my previous large-format printing job. However, I wanted to do more. I wanted to make a bigger impact and raise more awareness. Finally, the perfect opportunity arose with my new start-up company, JustSayCheese.com.
We started Just Say Cheese based on the simple fact that we all have way too many photos on our phones and never do anything with them. Thousands of memories each year get loaded onto hard drives and rarely visited again. The marketplace didn’t offer an affordable way to showcase your photos and celebrate your memories with others. Through our unique, patent-pending process, we’ve developed a type of canvas print that is a fraction of the cost of any other photo-to-canvas company and can easily be ordered through our website. Our prints make for beautiful wall art, personalized gifts and can even be used as a type of reminiscence therapy for those suffering with Alzheimer’s, all at a price point that wasn’t previously available. Our team is dedicated to working hard for the success of JustSayCheese.com as well as our efforts to become a large supporter of the Alzheimer’s Association.
For every canvas print sold, JustSayCheese.com will donate $1 to the Alzheimer’s Association. I will continue to walk each year for my Dad – for my Grandma – for my Grandpa – and for the millions of other people impacted by the disease. Thank you for your support of our efforts and I look forward to seeing you at this year’s Denver Walk to End Alzheimer’s on September 19th!
Amy Miller, LCSW, is the Director of Family Services at the Alzheimer’s Association Colorado Chapter, where she meets with families and helps develop a plan of care to address short-term needs and long-term goals. Her background in working with older adults includes managing a Memory Care Unit at a Skilled Nursing Facility, as well as working with care managers & health clinics to provide information and support to older adults and their families.
One of the most common topics in family care consultations is how to go about choosing the right care community for a person with dementia. The process can be time-consuming and overwhelming, but having the right information will save families unnecessary time and disappointment. Here are the five steps for selecting the right care community:
Step 1: Determine what the person’s level of need is. Assisted Livings offer a lower level of supervision and medical attention than Skilled Nursing Facilities. The person might need Memory Care if they frequently try to leave and are at risk of wandering. Click here to learn more.
Step 2: Determine how you will be paying for care. Assisted Livings average about $3500 a month, but costs can increase quickly if you need to add on personalized services. Skilled nursing averages $7700 a month. Generally, a person can pay out of pocket, with a long-term care insurance policy, with VA benefits, or through Long-term Care Medicaid. Keep in mind not every community accepts Medicaid. If you need assistance determining how you will pay, the Alzheimer’s Association offers a free Legal and Financial Planning class.
Step 3: Call the Alzheimer’s Association Helpline (800.272.3900) to get a list of care communities in your area. Find the communities that work based on level of care, payer source accepted, and location. Call to see if there is a waitlist, and if you are paying with Medicaid check if the community requires you to pay out of pocket for a period of time first before you can use your Medicaid benefits.
Step 4: Tour three to five places. Use the following checklists from the ombudsman’s office when touring to get a feel for the community:
Once you have visited a few places, call the Area Agency on Aging and speak to the Long-Term Care Ombudsman to see if there have been frequent complaints or serious issues on their Health Department surveys.
Step 5: Tour the places that have passed your screening again. At least once arrive without an appointment, ideally during the evening or weekends when most of the management team isn’t there. Visit during a mealtime, and observe how staff are able to manage during their busiest time of day. See if there are visiting family members that you can talk to about their experience.
Trusting a care community to care for your loved one is difficult. It can be confusing to know where to start, but the Alzheimer’s Association is here to help. If you’d like more information on choosing a care community, you can contact the Helpline 24/7 at 800.272.3900 and speak to a counselor over the phone or set up an in-office Care Consultation to create a step-by-step action plan specific to your family’s situation.
Quick Guide To Helping Families Select A Care Community:
Determine the level of need (ALF, Memory Care, Skilled) and how you will be paying (LTC insurance, VA benefits, private pay, Medicaid).
Go through our list, finding places that will work in terms of location, payer source, and level of need.
Call and ask about any waitlists.
Tour 3-5 places once. Get a feeling for the community using our checklists of things to look for.
Any contenders that are still in the running after the first visit: call the long-term care ombudsman to see if they have any frequent complaints from residents or families or serious deficiencies from the Health Department.
Tour again, this time unannounced. Go during the evening or weekend, when most managers have gone home. If possible, go during meal time to see the staff when the demand on their time is highest, and see if they are still able to interact and take the time with residents that is needed.
Following the release of Still Alice, a movie staring Julianne Moore as a Columbia linguistics professor diagnosed with early-onset Alzheimer’s disease, several courageous members of our Early Stage Group got together to kick off a new social media campaign, #StillMe. The campaign aims to raise awareness about Alzheimer’s disease by putting a face on a disease that affects more than 5 million Americans.
Every 67 seconds someone in the United States develops Alzheimer’s, a progressive disease, where dementia symptoms gradually worsen over time. In its early stages, memory loss is mild. In the late-stages of Alzheimer’s, individuals lose the ability to carry on a conversation and respond to their environment. The #StillMe project aims to emphasize the individuals behind a disease that slowly robs them of themselves.
It is the slow and sorrowful progression of Alzheimer’s disease in a loved one that inspired Brad Torchia, a Denver based professional photographer, to get involved with the project:
A few years ago my grandmother was diagnosed with Alzheimer’s disease. My family lives across the country from me, and on my trips home every six months I would notice her decline, as well as the devastating effect it was having on everyone around her. I started photographing her as a way to make sense of the situation, and slow the process in my mind. Over time, this has turned into a larger scale portrait project that I have been working on in conjunction with the Alzheimer’s Association of Colorado. I provide portraits of those living with the disease to their families at no cost, and simultaneously create a personal body of work. With this series, my goal is to convey the personality, and subtle, but noticeable effects that begin to take shape within the first stages of diagnosis, as well as contribute to the growing conversation around this disease.
Barring the development of medical breakthroughs to prevent, slow or stop the disease, by 2050, the number of people age 65 and older with Alzheimer’s disease may nearly triple to as many as 16 million. Despite this trajectory, Alzheimer’s remains the most expensive condition in the United States, and one of the most underfunded disease. Hopefully, the #StillMe campaign can shed a light on the individuals behind these statistics, because where there is humanity there is hope.
“We support you not to win Broncos tickets, but because what you do is important,” said Tom Hindorff as he accepted a pair of AFC Divisional Playoff tickets to the Broncos vs Colts game on Friday. Long time Alzheimer’s Association supporters and Broncos fans, Tom and his wife Jenny were quick to enter a ticket giveaway held by the Alzheimer’s Association Colorado Chapter.
Following Pat Bowlen’s Alzheimer’s announcement at the start of the NFL season, along with the subsequent impact of the Bronco’s community partnership on Alzheimer’s awareness throughout Colorado, the Alzheimer’s Association Colorado Chapter wanted to reward Broncos fans for their support of the Alzheimer’s cause. For four days last week, Broncos fans and Alzheimer’s Association supporters were encouraged to sign up for the Association’s monthly email newsletter, for a chance to win a pair of AFC Divisional Playoff tickets. Thanks to television coverage by 9News and social media coverage by the Denver Broncos, word of available Broncos tickets quickly circulated and the response was overwhelming. More than 8,450 people signed up for a chance to win tickets. On Tuesday, the day the giveaway was announced, alz.org/co attracted 7,720 visitors. On the same day in 2014, the website had 248 visitors. Delighted by the positive response to the giveaway by Broncos fans, a generous longtime Alzheimer’s Association supporter donated an additional four tickets! Bringing the total tickets available to eight.
On Friday, the four lucky winners were announced. The winners could not have been more excited after receiving a personal call from the Broncos and the Alzheimer’s Association. Tom Hindorff remarked that winning the tickets was, “a dream come true for me and my wife. We even found child care and will wear orange and purple to thank the Alzheimer’s Association.”
Although many fans left Sports Authority Field feeling deflated on Sunday night following the Broncos’ loss to the Colts, for those who won tickets while supporting a great cause the loss was easier to stomach. “Even though the Broncos lost, we still had a lot of fun,” said Edward Rose.
Because Alzheimer’s disease affects African Americans and Hispanic communities at a rate almost twice higher the general population, reaching diverse communities is a key value of the Alzheimer’s Association. Providing Spanish speaking support through care consultations, support groups and education is one method for outreach to Latino families living with Alzheimer’s Disease. Diversity and Inclusion doesn’t stop there, take a peek at all the great work underway at the Colorado Alzheimer’s Association:
In February, Staff members David Hoppe and Marissa Volpe visited Aza Day Center to provide Education on the Basics Of Alzheimer’s Disease. Listening to how Iraqi communities care for elders in Iraq was especially interesting.
SAGE (Services and Advocacy for GLBT Elders) network and the National Alzheimer’s Association have announced their official partnership. Participating in a Senior Health fair with the Center/SAGE in early August works to increase awareness about Services and Programs for LGBT elders.
At Mairik Day Center in south Aurora, Nepalese, Burmese and Bhutanese Elders gather for social and educational purposes. The Alzheimer’s Association recently led an interactive session on The Ten Warning Signs of Alzheimer’s Disease. One participant responded, “Oh, this is the disease we describe as when our parents become our children.”
Attendees at a local Senior “Pachanga” (party!) register for more information regarding Alzheimer’s disease. Spanish speaking services are available 24-7 through our Helpline. Besides Spanish, over 180 languages are offered on the helpline!
Diversity and Outreach is excited to announce a partnership with AINC (Audio Information Network of Colorado). The Alzheimer’s Association will be featured with its own station for those who seeking to receive information by radio or phone.
Diversity is imperative and integral to our mission at the Alzheimer’s Association. It is a promise we make to those we serve. Our team understands that valuing diversity and inclusiveness is critical to our mission of a world without Alzheimer’s. We seek to be inclusive of the millions of people currently affected by Alzheimer’s disease, their caregivers and the communities in which they live.
We have chosen to join the Walk to End Alzheimer’s in honor for my grandfather Ricardo Gali who passed away from Alzheimer’s in December 2012 at the age of 97. My family has a unique background story which is why I feel my grandfather fought for so long and so hard.
My grandfather, grandmother were born and raised in Havana Cuba. When my mother was 2 years old they began their journey to America. My grandparents went through some very frightening events to get to America, including coming very close to being shot for sneaking milk to my mother and uncle (he was 1 at the time). From the minute my grandfather touched American soil he expressed how grateful he was to be here and how important family was. This was passed on to all of the grandchildren from a young age. I have very fond memories of my grandfather teaching us what it meant to be a part of a family that escaped Cuba unharmed. My grandfather always made sure we did everything as a family.
Growing up I thought it was normal to always have family gatherings with extended cousins, great aunts etc. As I got older I realized how unique we were and cherished it even more. My grandfather was always a very active person and never believed in hiring anyone to do anything, rather do it all himself. As time went on I saw the change in my grandfather and saw him getting more and more frustrated with things that seemed effortless not too long prior. As time went on we all started to see not only the affect on him but also my grandmother as she was the main care taker for him, but never once gave up. We all helped out where we could constantly visiting and staying late to make sure my grandmother had help and had someone to talk to when there were bad days.
3 years prior to my grandfather passing he began falling a lot and my grandmother could not help him back up, so all of the children and grandchildren moved our family’s to be closer so there was always someone minutes away in case of an emergency. Shortly after we all moved I saw the values that my grandfather constantly talked about come to life. My grandfather had fallen, but this time he had hurt himself pretty bad and we had to call the ambulance. Within minutes of us getting the call that he fell and needed a hospital we were all at my grandparent’s house to help out and keep my grandmother calm. As the ambulance took him away we all followed. The hospital had about 30 people sitting in the waiting room to hear about my grandfather. Towards the end things got harder but we never gave up and spent as much time as possible with him knowing time was coming to an end.
It will be 2 years in December since my grandfather has passed and our family has only bonded closer and stronger. We are all still hurt over his passing but know he is watching over us. We still gather for every holiday, birthday, and just because, because that is how he would of wanted it and that is how he liked our family, close together and spreading endless love between each other. This is why we will be participating as a family in the Walk to End Alzheimer’s at Denver City Park on September 20, 2014 to honor Ricardo Gali.
Ready to be inspired? Meet Anna, one of our youngest Alzheimer’s Advocates who recently attended the Alzheimer’s Association International Conference in Copenhagen to present her Memory Box project:
I am now a senior in high school, but a formative event in my life happened when I was only eight years old. This was the year that my grandmother was diagnosed with Alzheimer’s disease. A once caring, brilliant botanist and gardener and more importantly the one of the central role models of my life, she was robbed of her ability to take care of her extensive gardens, of her ability to function in social settings, and ultimately of her ability to care for and even to recognize her family. I watched my grandfather struggle with the progression of the disease for several summers, and I spent several weeks each year living at their house in Illinois to help my grandfather around the house and to stay with my grandmother as a way to give him a break from his full-time job as her primary caretaker.
As I grew older and entered high school, I felt that I was not doing enough to support the cause for Alzheimer’s disease research and treatment. As a result, during my junior year in high school I created an educational interdisciplinary model for lower- and middle-school students to expose them to current Alzheimer’s research as well as to educate them regarding the disease and how to spread awareness. The project included community service work by the students (we chose to work with seventh graders) at a local senior living home, studying and presenting research on an Alzheimer’s-related topic, the creation of shadow boxes filled with memorabilia to honor a special elderly loved one, potentially one who has suffered from Alzheimer’s or dementia, and a culminating evening fundraising event to raise money for local Alzheimer’s research. Speakers at the event included Dr. Huntington Potter, a researcher at Anschutz Medical Campus in Aurora, Jill Lorentz from the Colorado chapter of the Alzheimer’s Association, and Catherine Ager, from Sunrise Senior Living. We named the project the “Memory Box Project.”
The project went smoothly and was extremely successful both as a fundraiser and as an experiential learning project for the students. I submitted an abstract of the Memory Box Project to the Alzheimer’s Association International Conference website in the hopes that the judges would select my model for a presentation at the 2014 conference in Copenhagen, Denmark. I didn’t expect to be selected to attend the conference, but I was interested in applying. Though my work was primarily in the social field rather than in the scientific field, I received notification from the AAIC abstract judges that my abstract was selected for a poster presentation at the conference. I was elated to hear this news, and began to plan my trip to Copenhagen right away. Before I left for the conference, I had to create a professionally printed poster that was around three feet tall and six feet wide, which encompassed my abstract and the process surrounding the Memory Box project. In early July I flew to Copenhagen in anticipation of my poster presentation, which took place on Tuesday, July 15th.
Copenhagen is a beautiful city, consisting of ancient buildings built on a system of canals that skirt the edges of the city. While I enjoyed sightseeing in Copenhagen, most of my time on the trip was devoted to attending the AAIC. I spent time attending lectures by some of the most notable researchers in the field of Alzheimer’s, and the conference was officially opened by one of the princesses of Denmark. Presenters and attendees of the conference were welcomed with an evening banquet and free rides at Tivoli Gardens, one of the oldest amusement parks in the world. On the day of my poster presentation, I arrived at the conference early to set up my gigantic poster. I was nervous about what people would think about my project, but as people started to trickle into the poster presentation area I became more confident. All of the people who approached my regarding my poster were curious, kind, and supportive. I made contacts with several other social activists in Australia, Germany, Denmark, Japan, and the US, all of whom were interested in either sponsoring my project as I work to reproduce it in other schools throughout Colorado, or, more excitingly, who were interested in recreating the project themselves in schools throughout the world. The AAIC was extremely worthwhile, exciting, and fun to attend each day that I spent in Denmark. I look forward to improving my Memory Box Project and to attending AAIC next year in Washington D.C. to make further contacts with people who have devoted their lives to eliminating Alzheimer’s disease.
On The Longest Day, June 21, 2014, teams around the world came together to honor the strength, passion and endurance of those facing Alzheimer’s with a day of activity. Worldwide, 2,713 participants and 1,113 teams raised millions of dollars to advance the efforts of the Alzheimer’s Association, the world’s largest voluntary health organization in Alzheimer’s care, support and research.
Colorado had 55 Longest Day teams, the most in the nation! Collectively, Coloradans raised over $62,000. What’s more, team members and communities came together to raise Alzheimer’s awareness from sunrise to sunset. Here are a few of their stories:
Josephine’s Team -Team Ceja honored their mother with a motorcycle rally and poker tournament. They raised over $1,500 through their Texas Hold ‘Em” tournament.
The energy on the Longest Day was truly contagious with 1,113 teams participating across the country, including 55 teams right here in Colorado. Thank you to all of the teams who were part of such a special event! Together, you are making difference on The Longest Day and every day!