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Learn about volunteer roles at the Alzheimer’s Association

The Alzheimer’s Association is powered by volunteers. In honor of National Volunteer Week, learn about just a few of the many roles available and hear from volunteers about their experience. There is a way for everyone to get involved!

Advocacy

Advocates help make Alzheimer’s a priority by writing, calling, emailing or visiting government officials. Thanks to the tireless work of these volunteers, we’ve passed critical legislation in Indiana and at the federal level – and we’ve significantly increased federal research funding.

“By sharing our stories and being a voice for those affected, we have achieved public policy victories that make a difference in countless lives. I’m honored to be a part of it.” -Jeanne

Care & Support

Volunteers are needed across the Greater Indiana Chapter to provide programs for all those affected by the disease, including support group facilitators and community educators.

Support Group Facilitators create a safe, open environment where caregivers share their feelings, thoughts and experiences to better cope with and manage the shared challenges of dementia.

Community Educators are volunteer public speakers who help the Alzheimer's Association provide consumer education. These volunteers deliver prepared presentations on topics related to Alzheimer’s disease and other dementias.

Health Equity Coalition

Members of the Health Equity Coalition serve as crucial links, bringing the Alzheimer's Association together with Community Health Connectors who provide vital information about Alzheimer's and Dementia. Their efforts sustain our outreach, particularly in underserved communities, supporting the chapter's broader community engagement and diversity, equity and inclusion (DEI) initiatives for health equity.

Development

Participants in the Walk to End Alzheimer’s and The Longest Day raise funds and awareness for the care and support and research programs of the Alzheimer's Association. There are also leadership opportunities available within our volunteer committees.

“I wanted to get involved so I could do my part in raising awareness and funds to help with research so that hopefully one day there can be a cure for this very cruel disease.” - Lisa

If you’re interested in joining the fight to #ENDALZ by becoming a volunteer, click here to fill out a short form, and someone will be in touch with you soon!

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Looking back on the fight to end Alzheimer's in 2023

2023 was another momentous year in the fight against Alzheimer’s and other dementia. Take a look back at some of the year's top stories – here in Indiana and across the country.  

January

The year got off to a great start as the Food and Drug Administration (FDA) granted accelerated approval of Leqembi (lecanemab) for the treatment of patients diagnosed with mild cognitive impairment (MCI) or early stage Alzheimer’s disease. It was the second disease-modifying drug to receive accelerated approval. 

February

The Alzheimer’s Association State Advocacy Day was held at the Indiana Statehouse in downtown Indianapolis. Governor Eric Holcomb and several state legislators spoke to volunteers from across the state who came to make their voices heard in support of HB 1422 establishing a dementia care specialist program. The bill later passed with overwhelming bipartisan support.

The care and support team kicked off a series of Community Forums, beginning in Lafayette. Additional Community Forums were held throughout the year in Columbus, Kokomo, and Indianapolis. These forums resulted in new program delivery and the addition of several support groups.

The family of Bruce Willis bravely shared that he has been diagnosed with frontotemporal dementia. By speaking out, they have helped to raise awareness of the disease.

March

Volunteer advocates from Indiana and across the country traveled to Washington D.C. to meet with members of Congress and advocate for policies to help those affected by Alzheimer’s. They also rallied for treatment access at the White House.

April

The Alzheimer’s Association Greater Indiana Chapter announced ALZ Equity for Indiana, a four-year initiative to reach underserved communities. It was made possible with a generous $1.2 million donation from Judy and Michael Harrington. The gift is the largest donation focused on diversity, equity and inclusion made to the Alzheimer’s Association and the largest single donation of any kind to the Greater Indiana Chapter.   

The Indianapolis Airport Authority (IAA) hosted the annual Community Leaders Gathering at the Indianapolis International Airport. Tamika Catchings, retired Indiana Fever player and WNBA champion, basketball hall of famer, four-time Olympic gold medalist, founder of the Catch the Stars Foundation, owner of Tea's Me Café, and IAA board member was the featured speaker. A former Lady Volunteer at the University of Tennessee, Catchings spoke about her coach, mentor and friend, the legendary Pat Summitt, who died of younger-onset Alzheimer’s disease at the age of 64.

Funding for HB 1422 establishing a dementia care specialist program was added to the Indiana budget, marking the first time that dementia-specific funding has been included in the state budget.

June

Building on the momentum of the White House rally earlier in the year, advocates across the country rallied for treatment access in their own communities. In Indiana, a rally was held on Monument Circle in downtown Indianapolis.

For the second year in a row, the Greater Indiana Chapter was a proud sponsor of the Indy Pride festival. Staff and volunteers also provided attendees with information about the impact of the disease on the LGBTQ+ community and resources to help.

The Longest Day was held on the summer solstice – the longest day of the year. Indianapolis and Fort Wayne landmarks went purple to mark the occasion. Participants raised funds and awareness on this day and throughout the year. By the end of the 2023 campaign, they raised a total of more than $397,000.

July  

In a momentous decision, the FDA granted traditional approval to Leqembi - making it the first traditional approval for an Alzheimer’s treatment that changes the underlying course of the disease. While not a cure, the treatment can give people in the early stages of Alzheimer’s more time to maintain their independence and do the things they love.

The Centers for Medicare & Medicaid Services (CMS) also announced a plan to enable access to FDA traditionally approved Alzheimer’s treatments. The announcement came after extensive efforts by the Alzheimer’s Association, bipartisan members of Congress, state attorneys general, clinicians, and, most importantly, advocates from communities all across the country.

The Greater Indiana Chapter was a proud sponsor of the Indiana Black & Minority Health Fair and provided information about the resources available to help those affected by Alzheimer’s and dementia.

The 2023 Alzheimer’s Association International Conference (AAIC) was held in Amsterdam, Netherlands and online. Indiana-based Eli Lilly reported full Phase 3 data from the clinical trial of donanemab. The results showed that donanemab significantly slowed cognitive and functional decline in people with early symptomatic Alzheimer’s disease.

The Centers for Medicare & Medicaid Services (CMS) announced an initiative known as the Guiding an Improved Dementia Experience (GUIDE) Model. The initiative will improve the way dementia care is delivered.

Legendary singer Tony Bennett passed away. He and his family had announced his Alzheimer’s diagnosis in 2021, helping to raise awareness and inspiring all those affected by the disease. 

August

The Greater Indiana Chapter partnered with The National Center for Racial Equity and Inclusion at Martin University to host the Public Health Summit Series: Alzheimer's Community Forum.

The Alzheimer’s Association presented State Senator Vaneta Becker (R – Evansville) and State Representative Gregory Porter (D – Indianapolis) with Legislative Champion Awards for their work in making Indiana a more dementia-capable state.

September

The 2023 Walk to End Alzheimer’s season kicked off in Greater Indiana and continued through October. Walks were held in East Central Indiana (Richmond), Lake County, Michiana, Heartland (Muncie/Anderson), Terre Haute, Indianapolis, Kokomo, Bloomington, Porter County, Fort Wayne, LaPorte County, Columbus, and Greater Lafayette. In all, more than 1,000 teams and 8,000 participants raised over $2 million.

The Greater Indiana Chapter sponsored the 2023 Indiana Latino Expo. Staff and volunteers also provided information about resources offered in English and Spanish, including the 24/7 Helpline, which offers assistance through bilingual staff and an interpreter service that accommodates more than 200 languages.

October

Kate Foley, Ph.D., a post-doctoral fellow at Indiana University, was named the inaugural Dr. Mel Perelman Fellow for Alzheimer's Research.

The Centers for Medicare & Medicaid Services (CMS) announced it will cover PET imaging for Alzheimer’s disease diagnosis.

November

The Alzheimer’s Association announced a milestone investment of $100 million in research initiatives in 2023 — the largest single-year investment since the organization was founded in 1980.

The annual Indiana Life Sciences Summit focused on Indiana's role in the fight against Alzheimer's and all other dementia. Greater Indiana Chapter board member Dr. Bruce Lamb was presented with the 2023 Watanabe Life Sciences Champion award.

Former First Lady Rosalynn Carter passed away. Her family had bravely shared her dementia diagnosis in May. For decades, Ms. Carter worked to improve the health and wellbeing of family caregivers through the Rosalynn Carter Institute for Caregivers.

December

Former Supreme Court Justice Sandra Day O'Connor passed away. In a letter to the American people in 2018, she bravely shared her dementia diagnosis. She also played an important role in making Alzheimer’s the national priority it is today, driven by her own experience as a caregiver for her husband who had the disease.

Thank you

Thank you to everyone who helped make this year a success. If you’re interested in getting involved in the fight to end Alzheimer’s in 2024, visit alz.org/Indiana/volunteer and fill out our interest form.

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Local artist uses talent to raise funds, uplift those affected

Artist LorieLee Andrews is a caregiver for her mother, who was diagnosed with dementia five years ago. One day, she was talking with a friend and fellow artist, sharing concerns about her care. “At this particular moment,” said LoriLee, “my wise friend said to me, ‘You should make art about your mother.’”

She began with an etching of a brain, then created forty mixed media pieces, each with at least one image of the etching. Her works are now on display at the Harrison Center, with proceeds benefiting the Alzheimer’s Association Greater Indiana Chapter through The Longest Day.

“During the course of my creating, various literature and information was placed in my path that impacted the purpose of the art,” said LorieLee. She came across a quote that referenced “Amor Fati,” which is Latin for The Love of our Fate – the name of the show. The concept “set me on a path of greater acceptance regarding my journey with my mother,” she said.

While her work began with a focus on her mother, it expanded into something much bigger. “I realized that I was incorporating humor, joy, creativity, curiosity, love, patience and imagination into the making of each piece,” she said. “These are exactly the same tools that make it possible for me to live on this journey with my mom as her disease progresses, and they are qualities that she encouraged in me the whole time I was growing up and living my adult life as well.”

LorieLee is hopeful that her art will inspire others who are also affected by the disease. “My prayer is that these collages will provide uplifting feelings for those who view them,” she said. “This is my way of bringing love to the moment.”

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"Caregiving is all about love" - What one dementia caregiver wants others to know about the journey

Bloomington resident Becky Boyle is a caregiver for both of her parents, including her father, who is living with Alzheimer's disease. In honor of National Family Caregivers Month in November, she shares what her journey has been like and what she wants other caregivers - and non-caregivers - to know.

What is the best thing about being a caregiver?

Caregiving is all about love – wanting what is best for the other person for their good. I sort of double care-give for both my mom and my dad. My dad has Alzheimer’s and now lives in a memory care facility. My care for him is making sure that his needs are met by the facility – and that’s not easy. I expect excellent care for my father and I have to work very hard to make sure that they are doing not only what is required by law but also just ‘caring for and about’ my dad. My care for my mom is changing a little bit. At first I was her support as she began the challenge of being the in-home care giver for Dad. Mom is now experiencing her own challenges and I need to make sure that she has everything she needs to continue to live as independently as she can for as long as she can.

"So, the BEST thing about caregiving is giving the care; loving my parents as they age and seeing to it that they have what they need."

What are some things you wished you had known before beginning your caregiver journey?

I wish that I had known ahead of time the places where I could go to get support; places where I could go to talk or let off steam with others experiencing similar challenges – and successes.

What are the things you do best as a caregiver?

I am an organizer. I can organize information very quickly in order to accomplish goals and execute tasks. I keep copious notes and I track all conversations. This is getting more difficult. Mom and Dad now live at two different facilities and they each have their own doctors, most of whom they visit twice a year: neurologist, primary care, cardiologist, dermatologist, dentist, and optometrist.

What are the biggest challenges of being a caregiver?

I work full time and my job is a busy job – I always have projects that I’m working on and since I work with college students it requires lots of energy – which I love. But I’m tired every day. I’m aging, too. I get the don’t-want-to's a lot. I often don’t really know what to do when I visit my dad (his speech/brain connection is pretty broken) and I am short tempered with my mom. I feel pretty guilty about both of those things.

How do you manage the stress that comes with being a caregiver?

I’ve had established care and health routines my entire adult life. I exercise, I eat healthy, I love to sleep and I have a great husband who keeps me focused on fun. It’s a blessing. If I didn’t have that already in place, with working full time, there is no way I could now begin. I love my parents very much, but I do have a husband and children who do come first – I just have to admit that and not feel guilty.

"I must continually remind myself that I’m doing the best I can."

What valuable lessons have you learned as a caregiver that you would share with other caregivers?

Hands down: Every single situation and story is incredibly unique.

"You have to honor your own story. You can NOT compare your story to someone else’s. However, finding those common ties with another’s story and being able to share is crucial."

Oftentimes, family and friends of dementia caregivers want to help, but they may not know how. What are some of the best things people can do to help caregivers like you?

Helping a caregiver ‘like me’ might look like:

Researching more about Alzheimer’s so that when I share my experience you have an understanding of it.

Asking me how it’s going with my parents. I promise not to dominate the whole conversation, but by asking me it will allow me to verbally process with someone I know who cares about me.

Participating with me because this is my dad (and mom) and all of my friends know how much I love them. Show me your support. My family is great but I was a bit sad that none of my friends offered to participate in the Walk to End Alzheimer's with me. That would have meant so much.

Asking me how you can help - I’ll tell you.

Going to visit my dad with me – just once – so that you can see what I experience. This is a piece of my life that is so very important.

For information about dementia caregiving, visit alz.org/care. For tips on managing caregiver stress, visit alz.org/caregiverstress. For free, around-the-clock support, call the Alzheimer's Association 24/7 Helpline: 800.272.3900.

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“Flowers are healing.” Northwest Indiana caregiver uses grandmother’s love of flowers to fight Alzheimer’s in her honor

Sara Mason was 13 years old when her grandmother, Delphine Walton, took her in and raised her, but she was Sara’s “person” long before that. As Sara says, “My grandma is my best friend.”

Her grandma is also “strong beyond belief.” The eldest of nine children, she was just a teenager when she helped raise her siblings when their mother died. She lost two sons and her husband but “kept on charging forward.”

That began to change nine years ago, when Delphine had a transient ischemic attack (TIA), a type of stroke that lasts only a few minutes. That’s when Sara started noticing memory issues, but it took time to receive a dementia diagnosis. “She was super good at covering up the fact that she didn't know some things anymore. I also feel like I made excuses for the fact that she was forgetful. I would say, ‘Oh, she's getting older. That happens.”

But the disease continued to progress. “The pandemic took a huge toll on her because she didn't see anyone but me. I feel like the lack of social interaction progressed things.”

Then came the moment when she tried to walk to her sister’s house – all the way across town. “It was that day that I knew she couldn't be left alone.”

Sara spoke with her husband and made the difficult decision to leave her job. She has found a new way of bringing in income using something her grandmother has always loved – through flowers. She started a flower farm called The Mason Homestead, and she brings her grandmother on deliveries. “We take our road trips every week in late summer and she enjoys every minute of it,” Sara said. “People come out to get their flowers and do their quick hello to her. It brings so much joy. I'm also filling her yard up with flowers, so it's our happy place.”

She created a peony sponsorship program as a way of raising funds to fight the disease through the Walk to End Alzheimer’s. She tags the sponsored flowers so that donors can come to visit them. “I've had people sponsoring them and telling me about their loved one with Alzheimer's and their story,” Sara said. “It's truly made me find a connection I didn't know I needed and not feel so alone in this journey. I would love for it to be a place where people with dementia can come out to do activities with the flowers and interact. Flowers are healing.”

She chose peonies because they are sought after by florists – and because the plant can last 100 years.

“I knew I needed to honor her legacy and pay it forward. People usually only think of legacy after a person is gone but her legacy is now. This will be Delphine's legacy.”

Her legacy is also one of love. After taking Sara in and raising her, their roles have reversed. “Being her caregiver is the hardest and most rewarding thing I’ve ever done. I'm in it for the long haul and I just want her to know she's loved.”

Despite all she is juggling, Sara got involved in the Walk for the first time this year to fight back against the disease that has taken so much.

“I need what my family is going through to mean something. There has to be some good that comes from this.”

If you’re interested in joining the Walk to End Alzheimer’s in Northwest Indiana, visit act.alz.org/nwiwalk. To join another Greater Indiana Chapter Walk, visit alz.org/Indiana/walk.

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“Everything fell apart.” Bloomington Walk to End Alzheimer’s volunteer walks to raise awareness, reduce stigma

Like many family members of people with dementia, Bloomington Walk to End Alzheimer’s community engagement chair Bridgett DiVohl noticed signs of dementia, such as memory loss, in her parents. Her dad had Parkinson's disease dementia and passed away in January 2023. Her mom is living with younger-onset Alzheimer’s. At only 58 years of age, she began asking the same questions over and over. Then she started getting lost while driving in familiar places and forgetting about plans.   

“She called me in 2016 to say ‘I have your name on my calendar next week for something and I can’t remember why,’” Bridgett said. “It was on Feb. 16, which was my birthday.”

But there was another sign, too. They were having financial problems with their business. “We didn’t understand why they were getting letters from the IRS and debt collectors. They both worked so hard and were always so responsible,” Bridgett said.

Ultimately, they lost the business that had been in the family for three generations. “My heart breaks because I wish that our family business could have lived on through another generation,” she said. “Everything fell apart, and we as a family have had to try and pick up the pieces.”

Bridgett had support from her brother – who worked for the family business; her sister-in-law, Maddi; and her wife, Steph – with whom she owns a business herself. “If my wife and I had not had time to develop our own business and an understanding of balance sheets and other business financial literacy tools, we would not have been able to work so productively with the attorneys to manage it all.”

In addition to the financial challenges, Bridgett has also found it difficult at times to care for her parents as a member of the LGBTQ+ community. Fortunately, many family members have been supportive and even expressed concern that caregiving could take a toll on her marriage. But her dad was often indifferent about homophobic comments made by others, and her mom always referred to Steph as her friend rather than her wife, despite attending their wedding. At special events Bridgett organized for her parents, while some people were eager to engage with Bridgett and Stef, others were withdrawn.

“I am confident enough now to not take it personally,” she said. “My focus has always been on my parents’ care. It just has to be.”

Despite these challenges, Bridgett knows she has been fortunate in many ways. As a successful business owner, she has financial stability, even when she had to step back to put caregiving first.

“Not everyone has that,” she said. “My heart goes out to families that are already struggling. I believe that it would be positive for more businesses to have something in place to learn how to support their employees during transitions into caretaking roles, so they don’t lose those employees altogether.”

She would also like to see less stigma surrounding the disease. “I believe that coming together at events like the Walk showcases that we are not hiding. This is not their fault and it shouldn’t be something that people feel the need to hide from the world.”

The Alzheimer’s Association Greater Indiana Chapter is hosting 13 Walk to End Alzheimer’s events this fall. To find your local Walk and register, visit alz.org/Indiana/walk.

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Is there any safe online groups for my mom to meet new people? She’s been scammed over and over on Facebook. She’s lonely and wants friends but it’s hard with her condition.

We're so sorry to hear that. Thank you for reaching out. We do offer a free online community designed for people living with dementia, as well as caregivers at https://alzconnected.org/. Free, around-the-clock support is also available through our 24/7 Helpline: 800.272.3900. Hope this helps!

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Former pastry chef uses passion for baking to raise awareness, funds through The Longest Day

Fort Wayne resident Lisa Stier Kidd didn’t notice when her dad, Bud Stier, started showing signs of memory loss 10 years ago. But her mom did.

It began with small signs, such as misplacing things frequently. Then his symptoms took a more serious turn. “My dad was driving and he stopped in the middle of the road and didn’t know where he was and didn’t know what to do next,” Lisa said. “Somehow, he snapped out of it and proceeded to drive, but my mom made sure I knew about it and she had my dad get an MRI of his brain at the VA hospital.”

The test didn’t show any abnormalities. But before Lisa’s mom died of ovarian cancer in 2015, she made a promise to her that she would look after her father. “She just knew something was wrong.”

Lisa made good on that promise in 2021, after her dad was diagnosed with dementia. She quit her job as a pastry chef just months after graduating from the program. “I really don’t regret this decision,” she said. “I love my dad and I will do anything to take care of my dad.”

Now, Lisa is using her baking skills in a new way – fighting the disease through The Longest Day. In addition to raising funds by selling her baked goods, she started a YouTube channel, Lisa's Virtual Kitchen, where she often includes her dad in videos. She sees it as another opportunity to raise awareness and make new memories with her dad. “I want people to see that if you do have a loved one dealing with Alzheimer’s Dementia, they aren’t useless. You can still have fun and include them in things you want to do.”

The Longest Day has given Lisa an outlet to fight back against a disease that has taken an emotional toll. “When my mom passed away from cancer, I knew how to deal with that. I knew she was sick and when she passed, I grieved. With Alzheimer’s, it feels like you are in a constant state of grief and every time you think you have a grasp on things, the disease progresses again.”

She says that while it’s difficult to watch her dad – a veteran and ordained minister – slip away, she tries to focus on the present moment. “Try and enjoy who they currently are because if you don’t you will miss out on all the little things, the smiles and the joy amongst the grief.”

To register for The Longest Day and select your activity, visit alz.org/tld.

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Alzheimer’s Association Greater Indiana Chapter launches “ALZ Equity for Indiana” with milestone $1.2 million donation

The Alzheimer’s Association Greater Indiana Chapter is launching a four-year initiative to reach underserved communities. The plan, ALZ Equity for Indiana, is made possible with a generous $1.2 million donation from Judy and Michael Harrington. The gift is the largest donation focused on diversity, equity and inclusion made to the Alzheimer’s Association and the largest single donation of any kind to the Greater Indiana Chapter.

ALZ Equity for Indiana will focus on outreach to populations that are disproportionately affected by Alzheimer’s and other dementia: Black, Latino and LGBTQ communities. Studies show that older Black Americans are twice as likely to develop Alzheimer’s than older whites. Latinos are 1.5 times as likely. At the same time, they are less likely to receive a timely diagnosis. Members of the LGBTQ community may face more challenges when receiving care because of social stigma and potential isolation.

“Diversity, equity and inclusion have been a focus of the Alzheimer’s Association for many years, but we must do more to reach these communities that are both disproportionately impacted by this disease and less likely to access the resources they need,” said Natalie Sutton, executive director, Alzheimer’s Association Greater Indiana Chapter. “This gift will change the lives of many Hoosiers who would otherwise go through their journey alone, and we are incredibly grateful to Judy and Michael for their commitment to this cause.”

Michael Harrington is a longtime supporter of diversity, equity and inclusion. During his tenure at Eli Lilly, he served for many years as an executive champion for Lilly Pride. He lost his mother, Mary Ellen Harrington, to Alzheimer’s disease, and Judy’s father, Dr. Gilbert Small, died with a form of dementia. Michael has served on the Greater Indiana Chapter board since July 2021.

“My mom was a nurturer at heart, and she took incredible care of her family,” said Michael Harrington. “When she developed dementia, the tables were turned, and our family became her primary caregivers. The resources provided by the Alzheimer’s Association were tremendously helpful to us during that time. It is critically important that everyone have access to these resources, and that requires outreach specifically to communities that experience significant health disparities. Judy and I are grateful to be able to make this contribution to help those most in need of assistance with this disease.”

The ALZ Equity for Indiana plan will be implemented in phases over the course of four years. In early April 2023, Vivien Carter joined our team in a new position, director of diversity, equity and inclusion. In her role, she will be tasked with assessing previous outreach efforts, conducting listening sessions, building a Community Action Network and developing a business plan. In year two, the Chapter will launch an awareness campaign targeted at underserved communities and hire an additional staff member to help move the plan forward. Years three and four will involve building on the work done in the initial phases to maintain and strengthen partnerships and programs.

“This donation is just the first step,” continued Sutton. “We know that it will take time and effort to build trust and better reach underserved populations, and we are excited to begin this important work.”

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Marquette and Greenwood Village South raise more than $45,000 to fight Alzheimer’s

In 2022, the Walk to End Alzheimer’s® – Indianapolis raised more than $1 million for the first time in its history. This milestone could only be achieved with the help of supporters who are committed to ending Alzheimer’s and all other dementias.

Among those longtime supporters were Marquette and Greenwood Village South, who have been holding an annual golf outing for 14 years. It began when their management company, Life Care Services, requested that all their communities begin fundraisers. As it happens, the executive directors of both communities loved to play golf, so they chose the game for their fundraiser.

In the summer of 2007, they raised around $11,000 – a big success for a first-time event. Since then, it was moved to May and has grown in teams, participants, sponsors, and – ultimately – funds raised. After a two-year hiatus, their 2022 outing was held on a picturesque October day and raised more than $45,000 – a new record for the event.  

“In our business, we see the devastating effects of Alzheimer’s each day in our residents and their families,” said Casey Maish, Administrative Services Director, Marquette Senior Living. “Some of us leave work and experience it at home as well. Our goal is to keep fighting so that one day there will not be a disease to fight against.”

Some of the strategies they use to raise funds can be adopted by many businesses and organizations that want to get involved in the fight, such as posting information on social media and reaching out to board members, vendors, and residents.

In 2023, the communities plan to resume holding the golf outing in May. They will also host bake sales, Donate $1 for Casual for a Cause Fridays, a Giving Garden display in the summer and a breakfast in the fall to engage their residents and staff.

The Alzheimer’s Association Greater Indiana Chapter thanks the Marquette and Greenwood Village South staff and all those involved for raising funds to help advance research and support those affected by the disease.

The 2023 “A Round to Remember” golf tournament will be held May 17th at Eagle Creek Golf Course. A foursome will be $800; an individual will be $200; and several sponsorships are available ranging from $200 to $2,500. All the proceeds from this event benefit the Greater Indiana Alzheimer’s Association for the Walk to End Alzheimer’s®.  If you have any questions, or need additional information, please contact Casey Maish of Marquette at 317.524.6511 or Diane Crowder of Greenwood Village South at 317.865.4622.

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2022: A milestone year in Indiana – and beyond

2022 was a milestone year for the Alzheimer’s Association Greater Indiana Chapter and – most importantly – for the fight against this disease. It included the Chapter’s first $1 million Walk to End Alzheimer’s and the most promising news yet in dementia research.

Take a look back at the year in advocacy, care and support, research, fundraising, and awareness.

FEBRUARY

Advocates from across Indiana urged state legislators to pass a bill requiring minimum dementia training standards for home health aides during the Virtual Indiana State Day of Action.

MARCH

The Alzheimer’s Association 2022 Alzheimer’s Disease Facts and Figures report was released. It found significant shortages in the dementia care workforce, both nationwide and in Indiana. According to the report, there are currently 66 geriatricians in Indiana. By 2050, the state will need 299 geriatricians to serve 10% of those 65 and older – a 353% increase.

After passing the Indiana House and Senate with overwhelming bipartisan support, Governor Eric Holcomb signed the dementia training bill into law.

MAY

Volunteer advocates traveled to Washington D.C. for the first in-person Advocacy Forum since before the pandemic. They met with members of Congress and their staff to advocate for making Alzheimer’s a national priority. Evansville advocate Evan Haynes-Knepper was honored with the Young Advocate of the Year award.

JUNE

We concluded our fiscal year and found that in FY22, 5,256 people in our Chapter area attended an education program, support group, or early stage activity – a 37% increase over the previous year.

Staff and volunteers attended Indy Pride, sharing information on Alzheimer’s in the LGBTQ community and raising awareness of the resources available to help all those affected. The Greater Indiana Chapter also sponsored a Hydration Station.

West Lafayette Mayor John Dennis announced that he has been diagnosed with early-onset Alzheimer's disease. By sharing his diagnosis, he raised awareness of the disease and helped other families know they are not alone in this journey. Later in the year, he served as honorary chair of the Greater Lafayette Walk to End Alzheimer’s.

Staff and volunteers attended the Indy Juneteenth Festival Wellness Fair at Celebration Plaza in White River State Park.

The Longest Day participants held fundraisers on and around the summer solstice. By the end of the campaign, Aug. 31, they raised more than $324,000. The top team was Spoke & Memories at more than $40,000.

JULY

The Greater Indiana Chapter once again partnered with the Indiana Alzheimer’s Disease Research Center to provide information and resources at the Indiana Black and Minority Health Fair.

A new event for The Longest Day, the Making Memories Classic pickleball tournament, was held in Greenwood. It was co-hosted by Greater Indiana Chapter board member Dr. David Mandlebaum and local pickleball pros Jade and Jackie Kawamoto. The event raised nearly $36,000.

The 2022 Alzheimer’s Association International Conference (AAIC) was held in San Diego. Greater Indiana Chapter executive director Natalie Sutton was in attendance and shared her reflections on the experience.

AUGUST

Indianapolis RivALZ players and coaches held their flag football game, raising more than $78,000.

SEPTEMBER

The 2022 Walk to End Alzheimer’s season began and continued for six weeks across 13 Greater Indiana Chapter communities. By the end of the season, 6,842 participants raised close to $2 million.

Positive topline results were announced from a Phase 3 global clinical trial of a treatment called lecanemab. The news brought additional energy and excitement to the remaining Walks.

To mark World Alzheimer’s Day, Sept. 21, the Chapter held a special Effective Communication Strategies for Future Healthcare Workers program. Students attended virtually from across the state. 

Photos: Ted Fields/Indianapolis Airport Authority

The Indianapolis Airport Authority, sponsor of the Indianapolis Walk to End Alzheimer’s Promise Garden, unveiled a 10-foot tall spinning Promise Garden flower in the Civic Plaza area of the Indianapolis International Airport. The display was surrounded by information about the warning signs of the disease and the Alzheimer’s Association Helpline (800.272.3900), a free resource that is available nationwide 24 hours a day, 7 days a week.

OCTOBER

The Walk to End Alzheimer’s season wrapped up, and the Indianapolis Walk achieved a major milestone – raising more than $1 million for the first time ever.

NOVEMBER

The 2022 Chocolate Sunday brunch gala was held, raising nearly $400,000.

To mark National Family Caregivers Month, the chapter held a “Caring for the Caregiver” workshop with about 40 faith leaders in Fort Wayne. Reaching out to faith communities was identified as a top priority during a local community forum, and both parties have committed to continuing the partnership in the new year. 

At the Clinical Trials on Alzheimer's Disease conference (CTAD), data from the Phase 3 global clinical trial of lecanemab confirmed this treatment changes the course of the disease in a meaningful way for people in the earliest stages of Alzheimer’s disease. The Alzheimer's Association has called for the Food and Drug Administration’s (FDA) accelerated approval of lecanemab and for the Centers for Medicare and Medicaid Services (CMS) to revise its coverage policy with the utmost urgency. Read the full statement from the Alzheimer’s Association here.

There has never been a more exciting time in the fight against Alzheimer’s and all other dementias, and 2023 promises to be another monumental year. Stay tuned on the latest research news by downloading the Science Hub app and following the Greater Indiana Chapter on Facebook, Twitter, LinkedIn, and Instagram.

Here’s to 2023!

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Indianapolis Airport Authority unveils Promise Garden display

Ahead of the 2022 Indianapolis Walk to End Alzheimer’s®, the Indianapolis Airport Authority unveiled a 10-foot tall spinning purple Promise Garden flower display in the Civic Plaza area of the Indianapolis International Airport. 

An unveiling event was held on Sept. 12. Mario Rodriguez, executive director of the Indianapolis Airport Authority; Natalie Sutton, executive director of the Alzheimer’s Association Greater Indiana Chapter; and Ersal Ozdemir, executive event chair of the 2022 Indianapolis Walk and owner of 2022 Walk host Indy Eleven spoke during the event. “Zeke,” the Indy Eleven mascot, was also in attendance.

In addition to raising awareness of the Walk, the display includes information on the warning signs of the disease and the Alzheimer’s Association Helpline (800.272.3900), a free resource that is available nationwide 24 hours a day, 7 days a week.

“At the Indianapolis Airport Authority, we understand the impact of Alzheimer’s disease on travelers and the community,” said Mario Rodriguez, executive director, Indianapolis Airport Authority. “We have quiet sensory rooms available for people living with the disease and their caregivers, and we offer tips and information to help travelers who need additional assistance. This partnership with the Alzheimer’s Association is a continuation of those efforts. We’re proud to help raise awareness of the disease and the resources available for travelers because we believe no one should walk – or fly – this journey alone.”

The Indianapolis Airport Authority is also proudly sponsoring the Promise Garden at this year’s Indianapolis Walk to End Alzheimer’s, which is set for Oct. 1 at Michael A. Carroll stadium. On Walk day, participants honor those affected by Alzheimer’s with the poignant Promise Garden ceremony — a mission-focused experience that signifies our solidarity in the fight against the disease. The colors of the Promise Garden flowers represent people’s connection to Alzheimer’s. The purple flower – the color of the airport display – represents those who have lost someone to Alzheimer’s, and it is the most common flower on Walk day.

“We are so grateful to the Indianapolis Airport Authority for supporting the Walk to End Alzheimer’s and for taking such an innovative approach to raising awareness,” said Natalie Sutton, executive director, Alzheimer’s Association Greater Indiana Chapter. “Recognizing the signs and symptoms and getting support in the early stages has tremendous benefits for those who are living with the disease and their caregivers, and this display will go a long way toward helping individuals and families here in Indiana and across the country.”

Registration for the Indianapolis Walk to End Alzheimer’s is free and available at alz.org/Indiana/walk.

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Executive Director Natalie Sutton reflects on AAIC22

Alzheimer’s Association Greater Indiana Chapter executive director Natalie Sutton attended the 2022 Alzheimer’s Association International Conference (AAIC) in San Diego. Below, she reflects on the experience and shares some of the top stories from this year. 

Over the last week, I have been privileged to join more than 5,000 in-person and 4,000 virtual attendees at AAIC 2022. Research is the key to finding a cure, and it is incredible to learn about all the exciting studies that are helping us uncover new information about this disease and how to fight it.

AAIC brings together the best and brightest minds from about 100 countries around the world. This year, about 60 percent of attendees are women. Many are students who are just beginning their careers in the field. Indiana is also well-represented, with 56 Hoosier researchers presenting their findings.

Here are just a few of the top stories from this year:  

·       Persistent loss of smell due to COVID-19 may be a better predictor of long-term cognitive impairment than the severity of the initial disease.

·       Experiences of racism are associated with lower memory scores and worse cognition in midlife and old age, especially among Black individuals.

·       Lower socioeconomic status is associated with higher dementia risk, lower cognitive performance and faster memory decline.

·       Experiencing high blood pressure disorders during pregnancy is associated with an increased risk of vascular dementia and accelerated brain aging.

Additional research is needed to understand these findings. And more must be done to address all forms of racism and to implement public health policies that improve health and well-being for all.

I’m proud to be part of an organization that is fighting dementia on all fronts – including research into new ways of diagnosing, treating, and reducing the risk of this disease – as well as advocating for public policy and providing care and support to those affected.

When you participate in a fundraiser for the Alzheimer’s Association, you play a critical role in this effort. I hope you’ll join us for one of the 13 Walk to End Alzheimer’s events we’re hosting this year – starting in just a matter of weeks. Register for free at alz.org/Indiana/walk.

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Alzheimer’s Association Greater Indiana Chapter Offers Tips for Caregivers During Extreme Heat

Extreme heat can have a significant impact on everyone's safety, but it can be especially stressful and confusing for individuals with Alzheimer’s and other dementias.

“People living with Alzheimer’s and other dementia can be vulnerable during extreme weather because their judgment may be impaired and they may be unable to communicate discomfort,” said Natalie Sutton, executive director, Alzheimer’s Association Greater Indiana Chapter. “It’s really important to take extra precautions with these individuals when there is extreme heat or other excessive weather conditions.”

The Alzheimer’s Association Greater Indiana Chapter is offering important safety tips for the 216,000 Hoosiers serving as family caregivers for someone with dementia:

●      Make a plan. Family and friends should prepare accordingly and make plans to regularly check-in on a person living with Alzheimer’s disease and other dementias during extreme heat. Arrange alternative plans for cooler spaces, if air conditioning is unavailable, and dress in loose, light clothing.

●      Pay attention at night. Keep people living with Alzheimer’s disease and other dementias cool by using fans and keeping the air conditioning on. At night, low temperatures can still exceed 75 degrees with little fluctuation in humidity levels, making for difficult and exacerbating sleeping conditions, heightened anxiety and increased agitation.

●      Prepare for behavioral challenges. Research shows that heat can increase agitation and confusion in people. Try to remove behavioral triggers by addressing the person’s physical needs related to the heat, then tending to their emotional needs.

●      Stay hydrated. Increased water intake is essential to maintaining good hydration and health during extreme heat. Know the signs of heat exhaustion to avoid heat stroke. Dehydration may be difficult to notice in a person living with Alzheimer’s disease and other dementias, as signs like increased fatigue, dry mouth and headache may be difficult to detect. People taking diuretics, sedatives, or certain heart medication may not sweat as much as others, but this does not mean that they are not hot.

●      Stay indoors and out of the sun. Heat stroke and heat exhaustion may occur in extreme heat conditions but symptoms may be difficult to detect in people living with Alzheimer’s and other dementias. Keep individuals cool by using air conditioning at home or move to a public place, such as a senior center or shopping mall. If you must go outside, be sure to dress appropriately, loose, light clothing, wear a hat, and apply sunscreen with an SPF of at least 30 or higher.

●      Stay informed. Keep an eye on local weather forecasts. High temperatures are not the only cause for concern. Humidity and air pollution indices can cause breathing difficulties. The person should be monitored regularly and seek medical attention if symptoms arise of dehydration, heat exhaustion, or heat stroke.

The Alzheimer's Association is here to help families take measures to prepare for and cope with such extraordinary circumstances. For more information, visit alz.org or call the 24/7 Helpline at 800.272.3900.  

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Greater Indiana Chapter thanks super early bird Walk sponsors

The 2022 Walk to End Alzheimer’s® doesn’t begin until September, but more than two dozen sponsors signed on to support Greater Indiana Chapter Walks months in advance. The Chapter is recognizing them for their commitment to the fight against Alzheimer’s and all other dementia.

“Our sponsors are critically important to advancing our mission,” said Julie Moore, Senior Director of the Walk to End Alzheimer's for the Greater Indiana Chapter. “Their contributions help us fund research and provide free programs for Hoosier families affected by the disease. Signing on early helps set our Walks up for success, and we are so grateful for their support.”

If you are interested in becoming a sponsor, email Julie at [email protected]. 

To register for the 2022 Walk to End Alzheimer’s, visit alz.org/indiana/walk. 

Thank you to these super early bird sponsors!

American Senior Communities Arlington/Roe & Co., Inc. Ball State University Beaumont Rehabilitation & Healthcare Center Chateau Rehabilitation & Healthcare Center Clinton House Rehabilitation & Healthcare Center Community Healthcare System Community Howard Regional Health Eli Lilly & Company Fort Wayne Metals Glick Philanthropies Heart to Heart Hospice Foundation Indiana Bridge, Inc. Indiana University School of Medicine Department of Neurology IU Credit Union Ivy Tech Community College Lakeland Rehabilitation & Healthcare Center Law Office of Claire E. Lewis LifeStream Services McGuire Sponsel Meadowood Meridian Health Services Midwest Steel Strack & Van Til Trinity Health TRISTAR Waldron Rehabilitation & Healthcare Center

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Board member turns passion for pickleball into fundraiser for The Longest Day

Take some elements of tennis, badminton and ping-pong, serve them up on an indoor or outdoor court, and you have pickleball – the nation's fastest-growing sport.

Among the game’s many devotees: Alzheimer’s Association Greater Indiana Chapter board member Dr. David Mandelbaum and his wife, Anna, who he says “has become nearly addicted to the sport.”

They are taking their passion for pickleball and turning it into a fundraiser for The Longest Day® by hosting a pickleball tournament. “We are looking to have between 150 and 200 players in the tournament and many interested spectators in the park that weekend. It will afford us not only the opportunity to generate lots of revenue, all of which will go to the Alzheimer’s Association, but will create an audience for some brief presentations and announcements we’ll be making to provide education regarding dementia, our organization and the cause we’re there to support,” Mandelbaum said.

Mandelbaum is raising funds and awareness in honor of his parents, Dr. Isidore (Iz) Mandelbaum and Germaine (Gerry) Mandelbaum, both of whom died with dementia. While his dad’s specific type of dementia isn’t known, his mother had vascular dementia. “My mother’s symptoms were somewhat cruel for a person who clearly had ‘the gift of gab.’ Her dementia showed up initially as progressive aphasia in which she found difficulty finding words whether when speaking or when writing a card or a note. She would use the word, ‘thing’ whenever she couldn’t find the right word. This began to occur more and more frequently over time. It became a challenging, and sometimes frustrating, game of ‘Password’ for myself and my siblings to try to figure out what she was trying to tell us.”

Mandelbaum says the disease had an impact on his family in a number of ways, including financially. “As the oldest of six kids, I accepted the responsibility of becoming the legal guardian of both parents as their health declined. Managing their affairs amounted to nearly a full-time job while I was also working full time as a busy physician and, of course, collaborating with my wife to manage our own affairs which obviously did not just go away.”

“Fortunately, as a retired surgeon, my father had done pretty well saving for a ‘rainy day,’” continued Mandelbaum. But he says watching his father’s decline from professor of surgery at Indiana University to being unable to eat or wash himself without assistance was “tough to handle.”

“It was the worst part of the roller coaster ride of emotions that accompanied my role as main caregiver,” he said.

Mandelbaum encourages anyone who shares his love of pickleball to join the Making Memories Matches Pickleball Tournament at Craig Park in Greenwood, IN, July 29-31. If not, he says, there are many other ways to join the fight, including hosting a different fundraiser and volunteering.

“Almost everyone I have talked to about my TLD fundraising project has been touched by this terrible curse in one way or another,” he said. “Fighting Alzheimer’s disease and all forms of dementia is certainly a worthy cause.”

#ENDALZ Pickleball Fundraising Dementia Volunteer VolunteerWeek

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“They touched our lives that day” One Indy Walk participant shares her Walk Day experience

Registration for the 2022 Walk to End Alzheimer’s is now open at alz.org/indiana/walk. Below is the story of one Indianapolis Walk participant, Traci McGaha. In her own words, she shares what the Walk Day experience was like for her last year, when she held the purple Promise Garden flower - honoring someone lost to the disease - for the first time.

In November of 2020 my Mom lost her battle with Frontotemporal Dementia, a type of dementia that causes issues with behavior and language. I walk every year because it was her favorite thing to do. It keeps her memory alive. I recently went through the “year of firsts”. Birthdays, holidays and other anniversaries you experience after your person passes away. It makes for a difficult year, but I am happy we got through it. 

I’ve been walking since my mother was first diagnosed in 2015. I’ve walked in East Lansing, MI (at my Alma Mater, Go Green!), Battle Creek, MI, and Indianapolis, IN, where we now walk every year.

I cherish the Indianapolis Walk because I get to experience it with some friends, family members and coworkers. 2021 was different for me. We got to walk in person again, but I had just lost my mom. My sister and I agreed that no matter what, we were taking our families downtown to the outdoor walk. We had the most amazing time with our families, friends, coworkers, and kids. Along the walk, others gave us balloons, smiles, conversations and so much more. They didn’t know how much they touched our lives that day. It started to rain towards the finish line and we almost took a shortcut to the car. But I saw the balloon arch and knew I needed to walk all the way through it that day. I couldn’t help but tear up in that moment. The people cheering us were amazing, and I want to thank each and every one of them because that was a huge help to me emotionally. 

I made it through the first Walk without my Mom (Sharon L Harris 11.30.2020). I love you, Mom, and I will walk every year I am able in hopes of one day raising that white flower.