This is the disease where our parents become our children

By Marissa Volpe, Diversity & Inclusion Coordinator, Alzheimer’s Association of Colorado

Mairik Adult Day Center in Centennial, Colorado, is not your typical strip mall shop. It has a bit of United Nations feel to it.

Nestled between a post office and a gluten free bakery, refugee elders from places like Burma, Bhutan and Nepal gather at the Russian-run facility to share meals, exercise and maintain community ties.

I was invited to the adult day center by Brandy Kramer, Spring Institute’s Project Shine coordinator. “Could the Alzheimer’s Association possibly teach a few classes to these aging populations?” asked Brandy. “Gladly,” I replied.

One of the best aspects of working in Diversity and Inclusion for the Alzheimer’s Association is the opportunity to not only serve diverse communities living with Alzheimer’s disease, but the challenge of matching outreach efforts to meet the needs of communities.20100812_flores_la_0286.jpg

For Mairik, we designed our outreach efforts to take place after the midday meal and a few exercises. I arrived at each session to the smells of aromatic rice and legume dishes. After lunch, I proceeded to lead groups with a few simple stretches, explaining to the group that healthy diet and exercise are paramount to brain health.

Then, we’d start in about Alzheimer’s disease, the warning signs and possible ways to reduce the risk of it. Working with community translators, we navigated language and cultural questions.

“So, this is the disease where our parents become our children,” expressed one elder.  Elders wanted to know about loved ones leaving stoves turned on and wandering. “Why does this happen?” “Is there something we can do?”

I explained the importance of warning signs and letting medical professionals know about them. And I encouraged the use of the Alzheimer’s Association 24/7 helpline with translation services in over 180 languages.

And then we’d talk about what we could do to reduce our risk of Alzheimer’s disease.  Drawing on the strengths of these community oriented societies emphasizing strong community ties, whole foods, socialization and exercise, I smiled to know so much of what the Alzheimer’s Association prescribes as “healthy living” is already underway in what appears to be an otherwise unassuming strip mall shop!

Special Walk to End Alzheimer’s Update

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As many of you know, the months of August and September are busy times for the Alzheimer’s Association of Colorado. The 11 Walks to End Alzheimer’s around the state contribute a significant portion of our Chapter’s revenues, and enable us to continue to provide education, programs and services – all at no charge – to Colorado families. In addition, we support national research to find the cure for this dreaded disease.

For those of you who have participated in or supported one of the Colorado Walks, you have our heartfelt thanks. For everyone else, there is still time to participate in one of the four upcoming Walks, sponsor a Walk team, or make a donation to ensure that no family facing Alzheimer’s has to face it without the services of the Alzheimer’s Association.

Upcoming Walks

DenverThe Denver Walk to End Alzheimer’s will be held Saturday, Sept. 17, at City Park. Registration opens at 7 a.m. and the Walk starts just after 9 o’clock. We are expecting 10,000 Walkers for Colorado’s premier Walk to End Alzheimer’s and one of the top five Walks in the entire country. The event currently stands at 53 percent of the $1.39 million goal. For details on the Walk or to make a donation, click here.

Colorado Springs – This Walk also will be held Saturday, Sept. 17, at America the Beautiful Park. Registration opens at 7:30 a.m. and the Walk starts just after 9 a.m.  This event currently stands at 57 percent of the $195,000 goal. To learn more about the Colorado Springs Walk or make a donation, click here.

Southwest Colorado/Cortez – The third Walk on Saturday, Sept. 17, will be held at Cortez City Park, with registration opening at 8:45 a.m. and the Walk at 9:15 a.m. This event currently stands at 57 percent of its $30,000 goal. Click here for more details or to donate to the Cortez Walk.

Larimer County/Loveland – The final Colorado Walk of 2016 will be held Saturday, Sept. 24, at Loveland’s Chapungu Sculpture Park, with registration opening at 9 a.m. and the Walk at 10 a.m. To register for this Walk or make a donation, click here. The Larimer Walk is at 61 percent of its $185,000 goal.

Recent Walks

Seven Walks to End Alzheimer’s have been held throughout the state already this year, beginning with the Aug. 13 Boulder Walk and including events in Greeley, Sterling, Steamboat Springs, Fort Morgan, Grand Junction and Pueblo.

Collectively, the 11 Colorado Walks are at __ percent of their goal. Check out some photos of the Boulder Walk, and be sure to like us on Facebook to see photos of all the other Walks.

“We are hopeful that those with a family member with an Alzheimer’s diagnosis, or those the Association has helped in the past, have an understanding and appreciation for the services that all Coloradoans can receive at no charge, from our 24/7 bilingual Helpline to education to support groups to a wide range of programs,” said Linda Mitchell, president and CEO of the Alzheimer’s Association of Colorado. “In addition, to enabling us to provide services locally, your contributions help further our national research efforts to find a prevention, treatment and cure for this deadly disease.”

To support any of the Walks, or to make a donation to support Alzheimer’s Association programs and services, click here.

Alzheimer’s Facts

  • 67,000 Coloradoans are living with Alzheimer’s – a total expected to top 92,000 by 2025, a 37% increase
    • 4 million Americans have Alzheimer’s – projected to top 16 million by 2050
  • 239,000 Colorado caregivers provided 272 million hours of unpaid care valued at $3.3 billion in 2015
  • Alzheimer’s is the sixth-leading cause of death in the U.S. – it kills more than breast and prostate cancer combined
    • Alzheimer’s is the only leading disease without a prevention, treatment or cure
  • African-American and Hispanic adults are twice as likely and 1.5 times as likely, respectively, to be diagnosed with Alzheimer’s than white adults
  • More than 1 in 5 Medicare dollars currently are spent on people with Alzheimer’s and other dementias – totals expected to reach $1 of $3 by 2050

 

14 Years After Our Diagnosis, I Still Walk…and Volunteer

By Deb Wells

A cool crispness penetrates the dimly lit sky as we drive to the Walk each year. “Want to grab a cup of coffee on the way?” “Sure, it’s a tradition, after all!”

I’m looking forward to my 14th Walk to End Alzheimer’s this year, the fourth year without John – the reason for my personal involvement in the Alzheimer’s Association. My late husband and I did our first Walk in 2002 – about two months after John’s diagnosis with younger-onset Alzheimer’s disease. The news was devastating and grief quickly grabbed us for a few weeks. Our first few days after getting the news, on the recommendation of our doctor, we visited the Alzheimer’s Association. I purchased books, grabbed brochures, and talked to some helpful staff members who encouraged our participation in support groups and classes. So began our journey…

John Wells and Murph

John Wells with his canine companion, Murph

Since the Walk was coming right up, we planned to participate. I was quietly apprehensive… Would this be too much for us, in terms of the exposure to others affected by Alzheimer’s? Would it be depressing to see so much about Alzheimer’s in one place? But, the opportunity to raise funds to help support the efforts of the Association outweighed all of the niggling thoughts that would deter us.

My apprehensions were unjustified! The spirit, the enthusiasm, the colorful fun of groups walking was so upbeat! We had a great time – gathered a boatload of information and materials, connected with the few folks we knew from our first activities, and went home in a better mood than I had ever thought was possible.

It really did become such a nice tradition for us – great memories now that John is gone. Our family and friends to one extent or another are always also on hand. We’ve had strollers, runners, wheelchairs, walkers – funny to think of the methods we’ve used to get around the lake at City Park over the years. John’s final years were in a wheelchair, but he still looked forward to being there to see old friends we made over the time we participated in activities with the Association. He always had a quick wit, which didn’t leave him throughout the disease process. A particular support group facilitator always caught his eye; he was enchanted by her! When he saw her on one of our last Walks together, she was shocked that he knew who she was, and could manage a joke to make her laugh.

So now, here I am working at the Alzheimer’s Association, recruiting volunteers to help on the day of the Walk. In this role there is a bit of a sales pitch to make for our various roles for volunteers. For this one, looking back on everything, I think being involved in the Walk made us more optimistic about the way we could handle the disease, and the changes coming our way.

If you have a personal reason, like I do, to be involved with the Alzheimer’s Association, joining us as a volunteer or doing the Walk is a worthwhile way to spend half a day in the late summer – making a difference for so many wonderful folks. Call me, at 303-813-1669 for details on volunteering or Walking on Saturday, Sept. 17, at beautiful City Park!

 

Deb Wells is the Volunteer and Statistics Coordinator for the Alzheimer’s Association of Colorado

Make a Special Tribute to a Loved One with Alzheimer’s – or to a Caregiver

Tomorrow is the deadline to participate in the Promise Garden Tribute Wall at the 2016 Denver Walk to End Alzheimer’s. Until noon on Friday, Sept. 8, you will have the opportunity to post your tribute to a loved one on the 16-foot-wide by 9-foot-high Jumbotron screen at the Colorado Chapter’s Walk to End Alzheimer’s event on Saturday, Sept. 17, at City Park.

Each image will be broadcast at least three times during the Walk. After the Denver Walk is completed, the Tribute Wall images will be shown throughout the year on the Colorado Chapter’s website: www.alz.org/co.tribute wall blog image - rider

In addition to honoring those with Alzheimer’s, the Tribute Wall also can be used to recognize caregivers who make supreme personal sacrifices. The donations support the Colorado Chapter’s ongoing care and support services that are offered at no charge throughout the state, as well as educational programs and research to find a cure.

Make a personal sponsorship or join with family and friends to recognize your loved one. Learn more about the Promise Garden Tribute Wall, or make a donation to the Alzheimer’s Association of Colorado…

Honoring My Parents

Kristen Beatty

Everyone impacted by Alzheimer’s has an amazing and touching story. My friend Marty, whose family also lives with this disease, very eloquently stated a wish that I share: that someday soon our kids will talk about Alzheimer’s the way we talk about polio – a disease that is all but gone due to the advances of science.

My Family

Blog photo.  Ray Rider, Sue Rider, Kristen Beatty, Brian BeattyMy story is also one of love. It is not only about my father currently living with Alzheimer’s, but the amazing caregiver that my mother was for him.

My father, Ray, was in the United States Air Force for 30 years. He was a fighter pilot – full of life – and considered himself lucky to be entrusted to defend our country by flying the F-100, F-4 and ultimately the F-16. He served in Vietnam, and never speaks of the experience.

The true hero of this 30-year story, though, is my mom, Sue. If you’ve ever read anything about military wives, you know the stamina, love and intention it takes to manage a household, move every two years (for some), make new friends, support other wives, and hold it together when your military husband is away often. She was loved deeply by her peers and by me and my brother for her joyful spirit and great advice.

At their 50th wedding anniversary, my mom shared great stories of their travels, adventures and friends. We’d lived in Europe for over 10 years, and she said we’d moved 26 times since they’d been married! Their grandkids called her “Super Nana” because she was indeed super-human, and always there with everything we needed, all while caring for my dad.

Our Journey

My dad was diagnosed with Alzheimer’s sometime in his 60s. My brother and I didn’t know for a while because my mom always kept it together and didn’t want to worry us. Even after we did find out, it didn’t seem to be so bad because my mom made everything seem effortless. She put up a good front to make everything appear “handled” and “not that bad.”

On November 10, 2012, my mom passed away unexpectedly. They said it was from heart failure. I agreed that her heart did fail – she died of a broken heart. Once she was gone and not there to make “everything alright,” we realized just how bad my dad’s condition was – the anger, the paranoia, the confusion and the onslaught of questions that he must’ve asked my mom over and over every day.

My Promise Flower Dedication

I am actively involved in the Alzheimer’s Association, volunteer at many events and even co-chair the Denver Walk to End Alzheimer’s volunteer committee.
As much money as I raise, and as hard as I work to get the word out for advocacy and change to support research to end this disease, it never seems like enough.tribute wall blog image - rider

I am so happy to have the chance to make a significant donation to support the Alzheimer’s Association of Colorado in their names, and place my mom and dad up on the Promise Garden Tribute Wall. My parents raised me to take action, and this is a perfect way to do that and honor both of them.

About the author:

Kristen Beatty is the co-chair of the Denver 2016 Walk to End Alzheimer’s Volunteer Committee, and the director of business development at Webolutions. Kristen is a proud graduate of the University of Denver, and has lived in Denver most of her adult life. She currently resides in Centennial with her husband, Brian, and their two children. Kristen and her brother, Doug, work together with their families to care for her father living with the disease.

Make a Special Tribute to a Loved One with Alzheimer’s – Whether You Walk or Not

Individuals who have lost a loved one to Alzheimer’s – or may know someone who is currently dealing with the challenges of the disease – have the opportunity to make a special tribute to that person at the 2016 Denver Walk to End Alzheimer’s, even if you won’t be able to participate in the annual Walk.

This year for the very first time, the Colorado Chapter’s Walk to End Alzheimer’s event on Saturday, Sept. 17, will feature a 16-foot-wide by 9-foot-high Jumbotron screen, which will show live images from the Walk as well as tributes on the new Promise Garden Tribute Wall.

A complement to the thousands of Promise Flowers that are raised annually at the Walk, the Tribute Wall will feature photos of loved ones who have experienced Alzheimer’s. The Tribute Wall will be prominently displayed on the Jumbotron screen at City Park, with each image broadcast at least three times during the Walk.

After the Denver Walk is completed, the Tribute Wall images will be shown throughout the year on the Colorado Chapter’s website: www.alz.org/co.

The new Promise Garden Tribute Wall offers families that have personally experienced Alzheimer’s the opportunity to honor their loved one while supporting the Colorado Chapter’s ongoing care and support services that are offered at no cost throughout the state, as well as educational programs and research to find a cure.

Each tribute will include the name and photo of the individual, as well as the corresponding Alzheimer’s Promise Flower of the person making the tribute:

  • Blue for an individual with Alzheimer’s
  • Yellow for a caregiver for someone with Alzheimer’s
  • Purple for an individual who has lost someone to Alzheimer’s
  •  Orange for an advocate for a world without Alzheimer’s

Learn more about the Promise Garden Tribute Wall, or make a donation to the Alzheimer’s Association of Colorado and secure your personal tribute to your loved one>>>

The Longest Day Volunteer Lia Jones – Color Her Motivated

On June 20, Denver marriage and family therapist Lia Jones will spend the day coloring.  It’s not a new form of therapy. It’s her way of paying tribute to her 84-year-old mother, Nelly, who is dealing with Alzheimer’s disease, and has found a measure of pleasure and refuge from the disease through art.

Along with five other volunteers on her Color My World team, Jones is participating in the Alzheimer’s Association of Colorado’s The Longest Day program to raise funds to support Alzheimer’s education, services and research, and to pay tribute to those like Nelly who daily deal with the challenges posed by the disease.

Through her education, Jones knows there is only so much she can do to counter the toll that Alzheimer’s is having on her mother.

“The smart, quick, creative woman with dancing feet of fire was struggling to process things we take for granted as simple, everyday parts of life,” said Jones of her mother. It was at that point that Jones realized she needed to help her parents relocate to a senior living residence.

When the disease robbed Nelly of the ability to enjoy reading, daughter Lia turned to art.  About five months ago, she bought her mother a coloring book, and the change was immediate.

“She loves it,” said Jones. “It was so helpful to my mom. She spends much of her day surrounded by her colorful pencils and beautiful coloring books.”

Her mother’s discovery of the joys of art inspired Jones to assemble the Color My World team for The Longest Day event with five friends, who will participate in a dawn-to-dusk coloring relay, each coloring during a designated portion of the day.  At sunset, the team will gather for a barbecue dinner to share their art and stories. Due to the generosity of donors, Jones’ team already has exceeded its personal fundraising goal of $4,160.

“What a great way to spend the day, joining her (Nelly) in spirit and in action, creating a more colorful world,” said Jones.

But Jones didn’t stop there.  She also is helping raise donations for a Longest Day event at her parents’ new home, The Residence at Timber Pines in Spring Hill, Florida, where residents and staff there will be participating in their own events to raise funds for the fight to end Alzheimer’s. Her Dad will also be physically participating in the events at The Residences throughout their event day.

“When it comes to Alzheimer’s, it’s a new concept for many people to consider because we’re all living longer,” said Jones.  “It has become an epidemic, and it’s something with which we all need to be concerned.  We all know someone affected by Alzheimer’s.”

Education, Training May Help Nursing Home Challenges with Persons with Alzheimer’s

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By Amelia Schafer, Vice President of Programs, Alzheimer’s Association of Colorado

News reports documenting the eviction of some challenging residents from nursing homes point up an issue that has been vexing health care professionals, residents and families for some time: how to adapt health care practices to an aging society that is showing an increasing incidence of Alzheimer’s disease and other dementias.

Nursing home staff are facing the same challenge that we are seeing with the police, first responders, ambulance crews and emergency room personnel. The traditional training given to these healthcare professionals, like that given to first or emergency responders, is not one-size-fits-all.  Persons with Alzheimer’s and other dementias may not respond to these situations in the way one expects, which can lead to conflicts and, unfortunately, residents in need being removed from nursing homes.

Recent press reports have outlined how thinly staffed nursing homes have, on occasion, involuntarily discharged or evicted individuals who are seen as labor-intensive or whose dementia has led to behavior considered a risk to others.

The Alzheimer’s Association has funded research on these “behavioral and psychotic symptoms of dementia” or BPSD, and found that more than 90 percent of people with dementia develop at least one BPSD, which may include depression, hallucinations, delusions, aggression, agitation and wandering.

Since more than five million Americans are living with Alzheimer’s – a number expected to top 16 million by 2050 – cases of BPSD will increase correspondingly.  Thus, by 2050 the number of Americans exhibiting BPSD could near 14.4 million, straining the nursing home industry with both sheer numbers and an exploding incidence of dementia-related behaviors.

The Alzheimer’s Association of Colorado (AAC) has been focused on this issue, providing specialized training to adult day care centers, nursing homes, assisted living facilities, in-home care businesses and hospices.  The Leaders in Dementia Care curriculum helps professional staff better understand Alzheimer’s disease and other dementias, learn communications techniques and approaches to interaction, and help develop non-pharmaceutical interventions to reduce agitation among persons receiving care.

More than 80 care communities around the state have chosen to go above and beyond – both in staff training as well as client care – by participating in Leaders in Dementia Care, but that’s just a fraction of the senior care organizations in the state.  There is still a substantial void to be filled.

The AAC is hoping to increase the progress against this challenge through a grant to develop “Person-Centered Dementia Care: Reducing Anxiety and Agitation to Improve Well-Being.”  If approved, the grant would enable AAC to provide at no cost customized training and consultation to staff as well as families of clients at six skilled care communities in the Denver area on a trial basis.

By promoting the utilization of a consistent, non-pharmacological process to address behaviors such as agitation and anxiety associated with Alzheimer’s and other dementias, it is expected that the program will further improve the well-being of residents as well as care community staff.

Like the Leaders in Dementia Care program, the goal here is to help nursing home staff recognize common triggers for behaviors associated with dementia. If we can eliminate the triggers, in many cases we can reduce or eliminate the behaviors. By doing that, we could help these individuals with dementia stay in their nursing homes and, hopefully, reduce the use of antipsychotic medications that are used to manage the “difficult” patients.

A Center for Medicare & Medicaid Services (CMS) report found that almost 40 percent of nursing home patients with signs of dementia were receiving antipsychotic drugs at some point in 2010, even though there was no diagnosis of psychosis.

And the Food and Drug Administration (FDA) has found that treatment of behavioral disorders in elderly persons with dementia by antipsychotic medications was associated with increased mortality.

“Managing dementia without relying on medication can help improve the quality of life for these residents,” said Dr. Patrick Conway, CMS chief medical officer and director of clinical standards and quality.

We frequently hear from nursing home staff that they are frustrated by the inability to change residents’ behaviors at their care communities. By helping nursing home personnel recognize these behavioral triggers, we believe it will give staff better skills and techniques to prevent or manage the behaviors. It can lead to modifications in routines, practices and sometimes even the environments in which care is provided.  Ultimately, it can enhance the relationships between staff and residents and improve the satisfaction of both parties.

Mrs. Annabel Bowlen to Cut the Opening Ceremony Ribbon at Denver Walk to End Alzheimer’s

Mrs. Annabel Bowlen cutting the ribbon at the 2014 Walk to End Alzheimer's

Mrs. Annabel Bowlen cutting the ribbon at the 2014 Walk to End Alzheimer’s.

Mrs. Annabel Bowlen, Captain of Team Super Bowlen, will join more than 10,000 Denver residents to unite in a movement to reclaim the future for millions at the Alzheimer’s Association’s Walk to End Alzheimer’s® . Team Super Bowlen was among the Top 10 National Walk to End Alzheimer’s Fundraising Teams in 2014. Broncos fans are invited to show support by joining and donating to Team Super Bowlen for the September 19 Walk to End Alzheimer’s at Denver City Park.

“I like being part of the Walk so we can all come together in unity to raise awareness for this dreadful disease that is plaguing our community and our nation. The fact of the matter is, we all know someone with Alzheimer’s.” –Mrs. Annabel Bowlen

Walk participants will honor those affected by Alzheimer’s disease with the poignant Promise Garden ceremony led by Beth Bowlen Wallace immediately before the Ribbon Cutting. In 2014 the Denver Walk was the fourth largest in the country raising more than one million dollars for care, support and research efforts for those impacted by Alzheimer’s

Denver Walk to End Alzheimer's.

Crowd at the 2014 Denver Walk to End Alzheimer’s.

Oh Say Can You Sing to End Alzheimer’s

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.

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.

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.
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, jambron@alz.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.