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.