Billings, Montana —38-year old Lacey Abell and her mom 64 year old Bonnie Erickson of Billings, Montana talk every day like many mothers and daughters, discussing a range of topics from family matters to plans to spend in the outdoors of beautiful Montana. However, what sets their talks apart is Lacey’s tendency to listen quietly while her mom speaks — a reflection, as Lacey explains, of the importance of ensuring those living with dementia are heard.
Bonnie, was a was a program analyst with the Department of Homeland Security when she suffered a stroke in 2017. Lacey, a RN Nurse, brought Bonnie to the hospital. At 57, Bonnie received a diagnosis of White Matter Disease, the erosion soon followed by Vascular Dementia. Bonnie and Lacey vividly recall the challenging diagnosis period, especially when a doctor ignored Bonnie and asked Lacey if she believed her mom was “demented”. In 2023, Bonnie receive another dementia diagnosis: Frontotemporal Dementia.
“I was in a dark place when first diagnosed,” said Bonnie. “My husband and son have been very supportive but Lacey wanted to swoop in and take care of me. I thought that was the path but we had a heart to heart conversation. I wanted Lacey to have her own life as a mom and wife with a full time job. I didn’t want to lean on Lacey. I wanted her to just be my daughter.”
Assisting Bonnie in maintaining her independence was her active participation in the National Council of Dementia Minds (NCDM). Bonnie was one of the founder of the organization that is led by persons living with dementia. Bonnie currently serves as the board chair.
Bonnie was among 65 persons living with dementia that recently served as co-researcher and co-author or NCDM’s groundbreaking report called Transforming Life with Dementia. The report, released April 15, included 131 recommendation to change dementia care and support, focused on the essential resources and information require by individuals upon receiving a dementia diagnosis and throughout their first year thereafter.
“This report is a big deal coming from subject matter experts when it comes to life after a dementia diagnosis, boiling up with what is missing, what we had and what we wish we had for the first year of diagnosis,” said Bonnie. We want this to help those newly diagnosed with dementia and those that will come up behind us.”
Bonnie said she and Lacey walked out of her diagnosis appointment with nothing, not even a piece of paper. According to Bonnie, to have resources available for others facing dementia would be a good start. Another recommendation highlighted the need for peer support. Bonnie said NCDM was so beneficial during her darkest hours because she met others living with dementia who were living well.
“It changed my life being with people living well with dementia. NCDM groups are different than other support groups because besides sharing information and resources, we use our experience to work on projects to educate and advocate for changes. We speak at medical and aging conferences and meetings.”
Lacey traveled with Bonnie to the American Society on Aging conference in San Francisco in March to promote the new study. Bonnie served on a panel with other persons living with dementia. They received a standing ovation, which is the norm for their highly sought after presentations.
Besides traveling to conferences, Lacey and Bonnie also travel to attend concerts in Las Vegas and Seattle, spend time on a Florida beach and visit Chicago where Lacey ran in a half marathon.
Lacey and Bonnie are currently making final plans for a fundraiser called Race for the Minds that Lacey started three years ago to raise money for National Council of Dementia Minds. The Race for the Minds Walk/Run will be held August 11 at Medicine Crow Middle School in Billings.
“I told mom that I want to be your fundraiser,” said Lacey. “Since I run marathons and 5Ks, this was something I wanted to do for her. I have fun doing the creative crafty things like design a logo. The fundraiser has slowly grown each year.”
Lacey raised $38,000 for NCDM last year with 186 participants.
How will Lacey and Bonnie spend this Mother’s Day? Bonnie hopes they can spend the day on the Yellowstone River soaking up the sunshine. Lacey will be there to listen quietly, cherishing their time together.
Free Virtual Series Includes Early Dementia Diagnosis Benefits, Addressing Dementia Stigma and Cultivating Hope and Resilience
A dedicated group of retired physicians living with various types of dementia are flipping the script to change the way we approach dementia care. A group of retired physicians will host the National Council of Dementia Mind (NCDM) series of free virtual webinars that include the benefits of an early dementia diagnosis, the view of dementia as a death sentence and cultivating hope and resilience together.
“As retired physicians, educators and advocates, we will address the view of dementia as a death sentence and the stigma associated with dementia within the healthcare profession,” said retired neurologist, Dr. Sara Langer, who was diagnosed with Lewy Body Dementia prior to the age of 65.
The webinars are relevant and beneficial for a wide range of attendees, including current and future healthcare professionals, faculty of medical schools and allied health professions, persons living with dementia, care partners, family members, friends, service providers and insurance companies.
The webinars begin Thursday, October 19 and run through November 16, at 1:00 to 2:00 p.m. EST (12:00 pm CT, 11:00 am MT, 10:00 am PT). The weekly virtual webinars are listed below.
“Doctors living with dementia represent retired physicians who are determined to improve how the medical profession interacts with patients facing cognitive change,” Brenda Roberts, executive director of National Council of Dementia Minds said. “This webinar series will help persons living with dementia learn about the vital role of self-advocacy and the power of support systems in navigating this journey. This series will enhance our understanding of cognitive impairment, improve communication and care skills, and be a part of a collaborative and compassionate approach to supporting persons living with dementia.”
The retired physicians participating in the webinar series are:
About National Council of Dementia Minds (NCDM)
A nonprofit national organization originated in Michigan, NCDM dispels many of the myths about living with dementia and provides strategies, hope, and resources to live well with dementia.
55 million people live with dementia worldwide, and there are 10 million new cases every year. Every three seconds, a person is diagnosed with dementia. In addition, more people are getting diagnosed with dementia at an earlier age and still have plenty of life to live.
WSJ story on Dementia Minds: Their Dementia Diagnosis Doesn’t Mean They’re Keeping Silent
For Information on the National Council of Dementia Minds, please visit: https://dementiaminds.org/
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As the nation’s first not-for-profit organization founded and governed by persons living with dementia, the National Council of Dementia Minds is proud to announce the appointment of two new board members.
This is a momentous occasion for the National Council of Dementia Minds as we expand our board of directors beyond our founding members. Our new board members, Monica Downer and Dr. Arnold Beresh will help us continue to build our legacy and achieve our vision, “People living with dementia transforming the worldview of Neurocognitive Disorders.”
Monica and Arnie have been active participants in Dementia Minds groups as well as national advocates. Monica is a member of the Black Dementia Minds group and serves on the advisory committee for the National Institute on Aging IMPACT Collaboratory. Arnie is a participant in both A Brotherhood of Dementia Minds and Doctors with Dementia. He was a volunteer and advocate with the Alzheimer’s Association for years prior to his diagnosis.
Monica is a graduate of Georgia State University and was a dedicated special education teacher for 19 years. Monica continues to capitalize on her educational skills as a national dementia educator and advocate. She works tirelessly to debunk the stigma and myths associated with dementia, especially the myth that only older people get dementia. Monica is an avid reader and enjoys cooking. She is married and has two sons. In 2016, Monica was diagnosed with Mild Cognitive Impairment (MCI) at the age of 45. Four years later, Monica was diagnosed with Frontotemporal Dementia (FTD). In 2022, Monica was informed that her diagnosis was not FTD but undetermined dementia.
Monica lives in Louisville, Kentucky.
Arnold (Arnie) Beresh, DPM, is a former podiatrist and foot and ankle surgeon. Throughout his career, Arnie served in a variety of leadership roles including a fellow to the American Board of Podiatric Surgery and National Board of Podiatry Examiners as well as serving as the president of the Virginia Podiatric Medical Association. Arnie utilizes his leadership skills as a state and national dementia advocate and educator. He monitors drug trials and research and provides expert testimony at the state and national levels. Arnie is particularly passionate about educating future medical providers about dementia. He is also known for both his humor and generosity. He and his wife have had a life-long love for pets and now enjoy a variety of animatronic pets. In 2015, Arnie was diagnosed with MCI and Frontotemporal Dementia (FTD) at the age of 62. In 2022, he was diagnosed with mixed dementia.
Arnie lives in White Lake, Michigan.
Congratulations Monica and Arnie!
Bonnie Erickson
Board President, National Council of Dementia Minds
