Facing Alzheimer's with family, friends, music and meds

Facing an Alzheimer's diagnosis is a daunting task, but Joni Beck Brewer of Golden isn’t facing it alone, and she’s doing her best to battle the disease to a standstill.

With Bruce Brewer, her husband of 45 years, at her side, Joni is combining the wonders of modern medicine with the healing powers of music and the support of friends and family to defy the odds. So far, the news is encouraging.

Taking advantage of the very latest tool in the medical community’s toolbox, Joni was in the first group at UC Health to receive twice-monthly infusions of Leqembi, a drug recently approved by the FDA after having shown promise in clinical trials for slowing the progression of Alzheimer's. The infusions started last August, about eight months after her diagnosis.

So far, Joni believes “there has been little to no progression of the disease. Someday they will find a cure. Although I won’t be around for that, I am hopeful for others.”

Early warning signs

While Joni has no family history of Alzheimer's disease, she began to experience symptoms that, with help from her nurse practitioner, led her to schedule appointments with both speech therapists and neurologists. 

“Once, I was on the phone with someone I worked with on a volunteer board and I needed to write down a reminder for myself,” she said. “All of a sudden, I realized that I couldn’t write a simple word. I couldn’t remember how to spell the word or, if I knew what the word was or how to write the letters.”

That moment of panic reinforced the concern that had been growing as she found it difficult to recall core information such as the birthdates of her children, when she finished school and when she got married.

“I couldn’t remember any of them,” she said.

Those events and the subsequent meetings with specialists led to an Alzheimer’s diagnosis in January of 2024 at age 69 and, months later, to beginning on Leqembi.

Doing their homework

While the outcome of the Alzheimer's infusions of Leqembi thus far have been positive, the Brewers would not have moved ahead without a thorough review, particularly since the drug comes with a serious set of potential side effects that include brain bleeding and swelling.

“My husband and I were given very extensive information about the potential side effects,” Joni said. “We knew that I could experience them, but I am at a lower risk because I do not carry the (APOE e4) gene.”

In addition to the infusions, Joni receives an oral neurological exam every six months to measure her cognitive health. And she receives periodic MRI exams to monitor for brain bleeding and swelling, and to determine the level of amyloid plaques, which the infusions are designed to remove from her brain.

A supportive community

Joni’s Alzheimer's diagnosis has introduced her to a broad, supportive community as she and her husband navigate the serious implications of this disease.

“Early after my diagnosis, my husband and I participated in some online Alzheimer’s Association workshops and classes that were helpful,” Joni said. “I am fortunate to have family and friends supporting me and, in addition, there is something very different about what I get from attending the Association’s Early-Stage Support Group and being with people who are experiencing Alzheimer’s or another dementia themselves.

“I look forward to this online group each month where we share the good and the not so good, or what is going well for us, and what we are struggling with,” said Joni. “We try to give each other ideas about how to handle things or just admit that we don’t have an answer but we ‘get it,’ and we are with them through this time.”

The engagement in the Alzheimer’s community also has led the Brewers to get involved in the Denver Walk to End Alzheimer’s, a fundraiser to fund research and support the programs and services the Association offers at no charge to families.

“I formed a team with my husband called Joni’s Journey to End Alzheimer’s,” she said.  “With the support of family and friends, we raised over $5,000 last year.  I am now invited to ‘Champion’ events by the Association, which provides me with additional education and understanding of the disease, and a chance to network with others.”

Additionally, when Joni is not busy volunteering at an animal shelter two times a week, participating in her local synagogue, journalling, practicing yoga, working out at the local gym, following the MIND diet and playing with her new grandson, she and her husband are participating in a focus group, as part of a research grant, developing a Roadmap to Dementia.

The magic of music

The final piece in the Brewers’ self-care regimen is music, a passion of Joni’s and something she wants to share with others living with the same Alzheimer's diagnosis.

“I have been part of three different choral groups, but decided that it was becoming a little too difficult for me to continue,” she said. “I am not a star singer, but have always enjoyed singing with others.”

Then, a thoughtful friend and former choral partner sent Joni information about similar singing groups around the country composed of people living with Alzheimer's and other forms of dementia.

“I was so taken by the information about how helpful singing can be for us that I was surprised to find out that the Denver area had no known group like this,” she said. “My husband and I are now working to raise seed money to start such a group that could be up and running sometime late this year.”

Research has shown that people living with dementia retain the ability to remember and recognize music, even when other forms of memory decline.

“Singing can often allow individuals to reconnect with past experiences,” Joni said. Some research has shown that active participation in singing can enhance aspects of executive functioning, such as with attention, working memory and verbal fluency.

Joni Beck Brewer is one of 91,000 Coloradans among 7.4 million Americans living with Alzheimer’s disease. To learn more about the broad range of information, programs and services offered at no charge by the Alzheimer’s Association, go to alz.org or call the Association’s free Helpline, staffed 24/7 by trained professionals, at 800-272-3900.