Advocating For Alzheimer's 💜

Hello! 👋 send me a text message! Tell me what your thoughts 💭 are about this episode

 I found myself in a sea of cherry blossoms in Washington DC, 🏛 feeling a sense of renewal that only spring can bring.🌷🌳☀️ It was here, at the Alzheimer's Impact Movement's Advocacy Forum, that I channeled my personal loss into something greater—a passionate fight against Alzheimer’s and dementia.💜 This episode of Nearest and Dearest Podcast takes you through that journey, where we grapple with the staggering reality of Alzheimer's impact and the ray of hope that recent treatment advancements provide. I unpack both the emotional and realistic components of the disease, as someone who's witnessed its effects firsthand, watching my beautiful mom suffer and as an advocate for change.

There's no denying the urgency; the numbers are daunting, with Alzheimer's cases expected to double by 2050. But there’s power in unity, 🫶 and this episode is a testament to the collective strength of caregivers, advocates, and those living with the disease. 👫👭👬I discuss the Alzheimer's Association's vision,  where a world 🌎without this devastating condition isn't just a dream but a goal worth striving for. 🙌🤍 So, take a moment to tune in, find the hyperlinks below 🚨👇and let's embark on this fight together! 🤝It's not just about facing the facts—it's about fostering hope and action in an era where advocacy isn't just needed, it’s a matter of life and death. ❤️
LINKS! 🚨🚨👇👇

• https://www.alz.org ( find the facts, support & volunteer opportunities )
• https://en.wikipedia.org/wiki/Still_Alice ( details about this award winning movie - Still Alice )
• https://www.imdb.com/title/tt2049586/ ( details about this courageous journey Glen Campbell & his family embarked on together )
• https://www.imdb.com/title/tt15429788/ ( details about this heartwarming & magical performances by Tony Bennett & Lady Gaga )
• [e-mail] ( send me an email 📧 if you have any comments, suggestions or YOU want to share YOUR own personal story! ❤️)

Episode Transcript

Julie Rogers (00:06):
No one ever said life is easy, but I believe by
giving yourself permission, youwill find you have more control
over your life than you realize.
I'm Julie.
I hope you will join me bytaking responsibility for
yourself, by only controllingthe things you can and letting
go of the things that you can't.
By doing this, you will havediscovered the secret to having

(00:31):
happy, healthy and morefulfilling relationships.
This is Nearest And DearestPodcast.
I'm Julie Rogers and you arelistening to Season 3, episode 4
, Advocating For Alzheimer's.
So I recently attendedAlzheimer's Impact Movement's

(00:52):
Advocacy Forum in Washington DC,also known as AIM.
This is my second time as anadvocate representing District
24 in my home state of New York.
This annual event keeps gettingbigger every year.
There were over 1,000 advocates, along with the Alzheimer's

(01:12):
Organization staff, from all 50states.
Since this was my second year,I knew what to expect and I was
excited to meet even moreadvocates who are fighting to
end Alzheimer's and otherdementia.
The weather was awesome thecherry blossoms were in bloom,

(01:32):
along with some of the biggesttulips that I have ever seen.
There were shades of red,yellow and white.
Seeing spring unfold, with thetrees budding and the leaves
opening, reminds me of new life,positive change and renewal.
I can't help but compare thatto how it feels being an

(01:54):
advocate for such a personalcause to me.
The Alzheimer's organization ispresently in the treatment era.
There is new hope for peoplewho are living with early onset
Alzheimer's or other dementia.
There are currently FDAapproved drugs that treat the

(02:14):
underlying biology of thedisease that can give people
more time when early onsetAlzheimer's or dementia is
diagnosed.
More time to live their lives,decide on their own choices and

(02:35):
love their families.
After losing my beautiful momto this incurable, progressive
and fatal disease in 2019, Ifelt compelled to make a
difference, to see firsthand howmuch more advancement the
Alzheimer's organization hasalready accomplished since 2015,
when my mom's severe symptomsof dementia were beginning.

(02:57):
This has inspired me to becomepart of this fight.
I wanted to be part ofsomething that is bigger than me
, something that sparkscompassion, empathy and hope.
I have found that with thisamazing organization.
Unfortunately, this disease doesnot discriminate.

(03:20):
It doesn't care about yourethnicity, your religion, your
political views or how rich orpoor you are.
It won't stop its devastationuntil we find a cure.
Let me share with you somestaggering statistics.
There are 6.9 million Americanswho are living with Alzheimer's

(03:45):
disease.
By 2050, this number isprojected to rise to 13 million.
Over 11 million Americansprovide unpaid care for people
with Alzheimer's or otherdementia dementia.
These caregivers provided morethan 18 billion hours valued at

(04:08):
nearly 340 billion dollars.
One in three seniors dies withAlzheimer's or another dementia.
It kills more than breastcancer plus prostate cancer
combined.
The lifetime risk forAlzheimer's at age 45 for women

(04:41):
is 1 in 5, and it's 1 in 10 formen.
Let me clarify what dementia is.
It's an umbrella term for lossof memory and other thinking
abilities severe enough tointerfere with daily life.
Alzheimer's affects more peoplecompared to the other types of
dementia.
Alzheimer's disease is acontinuum.
The symptoms range from mild tomoderate and severe.

(05:03):
Alzheimer's begins 20 years ormore before memory loss and
other symptoms develop.
Think about that.
That's why it's so important totalk with your loved ones and
your own doctor about any memoryconcerns you or your loved one

(05:25):
might be experiencing.
More than 1 million additionaldirect care workers will be
needed between now and 2031.
That's more new workers than inany other single occupation in
the United States.
So, basically, with our diversegrowth, with population of

(05:48):
people who will be living withdementia, the more need for
skilled and knowledgeable careworkers to navigate and treat
this relentless disease, alongwith the loved one and their
families.
In 2024, health and long-termcare costs for people living

(06:12):
with Alzheimer's and otherdementia are projected to reach
$360 billion dollars.
All of these statistics andfacts are available on ALZ.
org.
I will share a hyperlink in myshow notes from wherever you
listen to Nearest And DearestPodcast.
The Alzheimer's Association'svision is a world without

(06:37):
Alzheimer's and all otherdementia.
It was formed in 1980.
The Alzheimer's Association isthe leading voluntary health
organization in Alzheimer's care, support and research.

(07:02):
One of my goals as an advocatefor my community is to fight and
stop the Alzheimer's stigma.
Stigma is the use of negativelabels to identify a person with
a disability or illness.
For Alzheimer's, it exists inpart due to the lack of public
awareness and understanding ofthe disease.
For my mom, she was able tohide a lot of her early, mild

(07:23):
and moderate symptoms from ourfamily and her friends.
I believe she felt a stigmaattached to what was happening
with her memory and hercognitive symptoms.
It wasn't until she wasstarting with those severe
symptoms that the family had tostep in and begin our caregiving

(07:47):
roles.
I want to educate the public sothat a loved one or family
member can be aware to seekmedical treatment when symptoms
are present.
The earlier a diagnosis happens,the better early-onset dementia
can be treated.
This leads to living the bestquality of life possible while

(08:11):
they're able to do so.
The loved one, along with thefamily, can make plans for their
future.
Support systems will not onlyhelp the loved one feel like
they are not alone, so doeshaving a support system for the
caregiver as well.
The choice to participate inclinical trials can help

(08:34):
scientists and doctors keepstriving to find a cure.
You are more than your diagnosis.
Our identities are oftendefined by what we do rather
than who we are.
The qualities that make eachperson unique represent a range

(08:55):
of domains, from physical traitsto our relationships with
others.
The diagnosis of Alzheimer's oranother dementia may impact how
you see yourself, but only youcan decide how much you will
allow the disease to be part ofwho you are.

(09:22):
I met some amazing, courageousadvocates at this forum who are
living with early onset dementia.
Their testimonies they sharedwith me and our legislators on
Capitol Hill Day was not justinspiring but, more importantly,
empowering.
I spent most of the day withthe sweetest couple, David and
Nancy, from Buffalo, New York.

(09:43):
David has been diagnosed withearly onset dementia.
This was his first Alzheimer'sImpact Forum, but he has been a
voice in his community already.

(10:08):
He understands the significancein raising his voice and
continuing to share his storyuntil he can't.
His courage puts a face infront of our government in order
to humanize this debilitatingdisease.
By doing so, David, along with6.9 million Americans who are
battling this disease, isdemanding the respect, care,

(10:29):
treatment, support and qualityof life that every single person
deserves.
I didn't know much aboutAlzheimer's or dementia before
my mom's symptoms wereprogressing.
I remember watching the movieStill Alice around the beginning

(10:49):
of 2015.
Julianne Moore portrayed DrAlice Howland, who was a
linguistics professor atColumbia University.
The story was fiction, but itwas inspired by a real person.
The character Alice, beganstruggling with her own words
and getting lost on her dailyruns.

(11:12):
She comes face-to-face with adevastating diagnosis of
early-onset Alzheimer's diseaseat the age of 50.
It was a hard film to watch.
I felt compassion and sorrowfor her character and her family
who had to watch heronce-vibrant life start to

(11:36):
disappear more and more eachpassing day.
I had no idea at that time thatmy family would also come face
to face with realizing our momwas battling the last stages of
Alzheimer's by the time sheturned 80.

(11:57):
Also around that time period,country music star Glen Campbell
, who also was battlingAlzheimer's, did a documentary
about his farewell tour.
The title is Glen Campbell,I'll Be Me.
I watched that documentary whenit first aired in June of 2015.

(12:28):
Watching both of these gave mea glimpse into what this
devastating disease does to theloved one and their families.
I applaud the courage and thetransparency the Campbell family
showed.
It definitely opened theaudience's eyes to witness how
this progressive and fataldisease robs the loved one of
their identity, while the familysuffers helplessly that

(12:52):
gut-wrenching aftermath.
His wife, Kim, valued theimportance of community.
Quote" But there's life andenergy and community.
He's there with other people,doctors, lawyers who are all

(13:15):
facing the same thing.
I'm in a community with otherfamily members who are going
through the same thing.
" She goes on to say Glenn isone of the first people who came
out and lived with dementiabefore the public.
It was his choice to do it.
He was, I think really brave.

(13:37):
" End quote.
Brave End quote.
Today there are countlesscelebrities who have been
diagnosed with Alzheimer's orother dementia.
Tony Bennett passed away lastyear at 96.
He didn't let his diagnosisdefine who he was.
His wife, Susan, explained in aprofile published in AARP

(14:02):
magazine, that therags-to-riches crooner was
officially diagnosed in 2016.
While many people end up losingtheir ability to speak,

(14:22):
understand and recognize theirloved ones, Susan said Tony was
a special case.
There were times when he hadbeen capable of recognizing his
friends and family and even ableto remember the lyrics and sing
his songs.
She said, quote, "inging iseverything to him, everything.
It has saved his life manytimes.

(14:44):
End quote.
Lady Gaga and Tony did a concertseries together.
I loved how the two of themperformed.
I bought the CD Love For Sale.
It connects me to my mombecause she grew up listening to
Tony and was a big fan of theBroadway soundtracks that were

(15:08):
on that playlist.
I'm also a big Lady Gaga fan,so whenever I want to feel
nostalgic and remember my mom, Ilistened to that playlist along
with Frank Sinatra, Dean Martinor any music from that
generation.

(15:28):
It instantly reminds me of mybeautiful mom.
If you didn't see theirperformance One Last Time: An
Evening with Tony Bennett andLady Gaga, you missed something
almost magical.
It was a celebration of Tony's95th birthday, which was

(15:50):
recorded on August 3rd and 5thof 2021 at Radio City Music Hall
in New York City.
It was his final publicperformance.
The duo was joined on stage bya 41-piece orchestra and
musicians related to bothartists.
Before its release, backstagecontent of the shows were

(16:14):
documented in CBS's TV news show60 Minutes.
The special was watched by over6.38 million viewers when it
first aired.
You can help erase the stigma ofAlzheimer's or other dementia.

(16:35):
Education, courage, open andhonest conversations and sharing
your own personal stories willbe the key to eliminate the
myths of these diseases.
I will add more hyperlinks thatrelate to this episode on my
show notes.
You will find them fromwherever you listen to Nearest

(17:06):
and Dearest Podcast.
Please share this episode withothers who you think might
benefit from listening to thisspecial episode.
Thank you for listening.
The views and opinionsexpressed by Nearest And Dearest
Podcast are those of theauthors and do not necessarily
reflect the official policy orposition of Nearest And Dearest

(17:27):
Podcast.
Any content provided by JulieRogers or any other authors are
of their opinion.
They are not intended to malignany religion, ethnic group,
club, organization, company,individual or anyone or anything
.
Thank you.