Advocating For Alzheimer's 💜

No one ever said life is easy, but I believe by giving yourself permission, you will find you have more control over your life than you realize. I'm Julie. I hope you will join me by taking responsibility for yourself, by only controlling the things you can and letting go of the things that you can't. By doing this, you will have discovered the secret to having happy, healthy and more fulfilling relationships. This is Nearest And Dearest Podcast. I'm Julie Rogers and you are listening to Season 3, episode 4, Advocating For Alzheimer's.

So I recently attended Alzheimer's Impact Movement's Advocacy Forum in Washington DC, also known as AIM. This is my second time as an advocate representing District 24 in my home state of New York. This annual event keeps getting bigger every year. There were over 1,000 advocates, along with the Alzheimer's Organization staff, from all 50 states. Since this was my second year, I knew what to expect and I was excited to meet even more advocates who are fighting to end Alzheimer's and other dementia. The weather was awesome the cherry blossoms were in bloom, along with some of the biggest tulips that I have ever seen. There were shades of red, yellow and white. Seeing spring unfold, with the trees budding and the leaves opening, reminds me of new life, positive change and renewal. I can't help but compare that to how it feels being an advocate for such a personal cause to me.

The Alzheimer's organization is presently in the treatment era. There is new hope for people who are living with early onset Alzheimer's or other dementia. There are currently FDA approved drugs that treat the underlying biology of the disease that can give people more time when early onset Alzheimer's or dementia is diagnosed. More time to live their lives, decide on their own choices and love their families. After losing my beautiful mom to this incurable, progressive and fatal disease in 2019, I felt compelled to make a difference, to see firsthand how much more advancement the Alzheimer's organization has already accomplished since 2015, when my mom's severe symptoms of dementia were beginning. This has inspired me to become part of this fight. I wanted to be part of something that is bigger than me, something that sparks compassion, empathy and hope. I have found that with this amazing organization.

Unfortunately, this disease does not discriminate. It doesn't care about your ethnicity, your religion, your political views or how rich or poor you are. It won't stop its devastation until we find a cure. Let me share with you some staggering statistics. There are 6.9 million Americans who are living with Alzheimer's disease. By 2050, this number is projected to rise to 13 million. Over 11 million Americans provide unpaid care for people with Alzheimer's or other dementia dementia. These caregivers provided more than 18 billion hours valued at nearly 340 billion dollars. One in three seniors dies with Alzheimer's or another dementia. It kills more than breast cancer plus prostate cancer combined. The lifetime risk for Alzheimer's at age 45 for women is 1 in 5, and it's 1 in 10 for men.

Let me clarify what dementia is. It's an umbrella term for loss of memory and other thinking abilities severe enough to interfere with daily life. Alzheimer's affects more people compared to the other types of dementia. Alzheimer's disease is a continuum. The symptoms range from mild to moderate and severe. Alzheimer's begins 20 years or more before memory loss and other symptoms develop. Think about that. That's why it's so important to talk with your loved ones and your own doctor about any memory concerns you or your loved one might be experiencing. More than 1 million additional direct care workers will be needed between now and 2031. That's more new workers than in any other single occupation in the United States. So, basically, with our diverse growth, with population of people who will be living with dementia, the more need for skilled and knowledgeable care workers to navigate and treat this relentless disease, along with the loved one and their families. In 2024, health and long-term care costs for people living with Alzheimer's and other dementia are projected to reach $360 billion dollars. All of these statistics and facts are available on ALZ. org. I will share a hyperlink in my show notes from wherever you listen to Nearest And Dearest Podcast. The Alzheimer's Association's vision is a world without Alzheimer's and all other dementia. It was formed in 1980. The Alzheimer's Association is the leading voluntary health organization in Alzheimer's care, support and research.

One of my goals as an advocate for my community is to fight and stop the Alzheimer's stigma. Stigma is the use of negative labels to identify a person with a disability or illness. For Alzheimer's, it exists in part due to the lack of public awareness and understanding of the disease. For my mom, she was able to hide a lot of her early, mild and moderate symptoms from our family and her friends. I believe she felt a stigma attached to what was happening with her memory and her cognitive symptoms. It wasn't until she was starting with those severe symptoms that the family had to step in and begin our caregiving roles. I want to educate the public so that a loved one or family member can be aware to seek medical treatment when symptoms are present.

The earlier a diagnosis happens, the better early-onset dementia can be treated. This leads to living the best quality of life possible while they're able to do so. The loved one, along with the family, can make plans for their future. Support systems will not only help the loved one feel like they are not alone, so does having a support system for the caregiver as well. The choice to participate in clinical trials can help scientists and doctors keep striving to find a cure.

You are more than your diagnosis. Our identities are often defined by what we do rather than who we are. The qualities that make each person unique represent a range of domains, from physical traits to our relationships with others. The diagnosis of Alzheimer's or another dementia may impact how you see yourself, but only you can decide how much you will allow the disease to be part of who you are. I met some amazing, courageous advocates at this forum who are living with early onset dementia. Their testimonies they shared with me and our legislators on Capitol Hill Day was not just inspiring but, more importantly, empowering. I spent most of the day with the sweetest couple, David and Nancy, from Buffalo, New York. David has been diagnosed with early onset dementia. This was his first Alzheimer's Impact Forum, but he has been a voice in his community already. He understands the significance in raising his voice and continuing to share his story until he can't. His courage puts a face in front of our government in order to humanize this debilitating disease. By doing so, David, along with 6.9 million Americans who are battling this disease, is demanding the respect, care, treatment, support and quality of life that every single person deserves.

I didn't know much about Alzheimer's or dementia before my mom's symptoms were progressing. I remember watching the movie Still Alice around the beginning of 2015. Julianne Moore portrayed Dr Alice Howland, who was a linguistics professor at Columbia University. The story was fiction, but it was inspired by a real person. The character Alice, began struggling with her own words and getting lost on her daily runs. She comes face-to-face with a devastating diagnosis of early-onset Alzheimer's disease at the age of 50. It was a hard film to watch. I felt compassion and sorrow for her character and her family who had to watch her once-vibrant life start to disappear more and more each passing day. I had no idea at that time that my family would also come face to face with realizing our mom was battling the last stages of Alzheimer's by the time she turned 80.

Also around that time period, country music star Glen Campbell, who also was battling Alzheimer's, did a documentary about his farewell tour. The title is Glen Campbell, I'll Be Me. I watched that documentary when it first aired in June of 2015. Watching both of these gave me a glimpse into what this devastating disease does to the loved one and their families. I applaud the courage and the transparency the Campbell family showed. It definitely opened the audience's eyes to witness how this progressive and fatal disease robs the loved one of their identity, while the family suffers helplessly that gut-wrenching aftermath.

His wife, Kim, valued the importance of community. Quote" But there's life and energy and community. He's there with other people, doctors, lawyers who are all facing the same thing. I'm in a community with other family members who are going through the same thing." She goes on to say Glenn is one of the first people who came out and lived with dementia before the public. It was his choice to do it. He was, I think really brave." End quote. Brave End quote.

Today there are countless celebrities who have been diagnosed with Alzheimer's or other dementia. Tony Bennett passed away last year at 96. He didn't let his diagnosis define who he was. His wife, Susan, explained in a profile published in AARP magazine, that the rags-to-riches crooner was officially diagnosed in 2016. While many people end up losing their ability to speak, understand and recognize their loved ones, Susan said Tony was a special case. There were times when he had been capable of recognizing his friends and family and even able to remember the lyrics and sing his songs. She said, quote, "inging is everything to him, everything. It has saved his life many times. End quote.

Lady Gaga and Tony did a concert series together. I loved how the two of them performed. I bought the CD Love For Sale. It connects me to my mom because she grew up listening to Tony and was a big fan of the Broadway soundtracks that were on that playlist. I'm also a big Lady Gaga fan, so whenever I want to feel nostalgic and remember my mom, I listened to that playlist along with Frank Sinatra, Dean Martin or any music from that generation. It instantly reminds me of my beautiful mom. If you didn't see their performance One Last Time: An Evening with Tony Bennett and Lady Gaga, you missed something almost magical. It was a celebration of Tony's 95th birthday, which was recorded on August 3rd and 5th of 2021 at Radio City Music Hall in New York City. It was his final public performance. The duo was joined on stage by a 41-piece orchestra and musicians related to both artists. Before its release, backstage content of the shows were documented in CBS's TV news show 60 Minutes. The special was watched by over 6.38 million viewers when it first aired.

You can help erase the stigma of Alzheimer's or other dementia. Education, courage, open and honest conversations and sharing your own personal stories will be the key to eliminate the myths of these diseases. I will add more hyperlinks that relate to this episode on my show notes. You will find them from wherever you listen to Nearest and Dearest Podcast. Please share this episode with others who you think might benefit from listening to this special episode. Thank you for listening. The views and opinions expressed by Nearest And Dearest Podcast are those of the authors and do not necessarily reflect the official policy or position of Nearest And Dearest Podcast. Any content provided by Julie Rogers or any other authors are of their opinion. They are not intended to malign any religion, ethnic group, club, organization, company, individual or anyone or anything. Thank you.