VOICES: The Emotional Anchors That Help Caregivers Stay Grounded

A dementia diagnosis, and the small things that unravel in the months, and sometimes years, before a diagnosis, can feel like a daily shift and a struggle to keep up. In the face of uncertainty, misdiagnosis, and unanswered questions, families search for something to hold onto, as the following collection of essays relay.

For Rosanna Fay, that anchor was her horse, Cosmo. For Tricia Kano, music and the ritual of going back to her home state was what preserved her connection with her brother. For others, learning about family history through undergoing genetic testing was the missing piece that brought clarity.

“The Importance of ‘Emotional Anchors’ For People With Alzheimer’s”

Rosanna Fay had grand plans of winning a Dressage Federation medal with her horse, Cosmo, but later realized Cosmo would serve a different purpose in her life. When Fay’s mother-in-law, Bev, began to have severe memory lapses, Fay and her husband took Bev to the neurologist. There, Bev was diagnosed with moderate-to-severe Alzheimer’s. 

Bev’s profound connection with Cosmo became a source of joy in everyone’s lives amidst newfound caregiving challenges. 

“It gave her something joyful. Something that landed and stuck deep. When she can’t see him [Cosmo] in person, we show her photos and short videos of him,” Fay writes. “She lights up each time. It brings her comfort and sparks recognition, even on hard days.”

Fay advises others to find what she calls ‘emotional anchors’ for their loved ones living with Alzheimer’s.

“Look for a passion or interest your loved one had earlier in life. Was it gardening? Pets? Painting?” Fay writes. “Try to bring that into their daily environment in a consistent, sensory way, through touch, visuals, music, scent, or activity.”

“How Family History Helped Confirm FTD”

Frontotemporal dementia is one of the most widely misdiagnosed dementias, and Beth and her husband didn’t receive his diagnosis until a year after they initially sought medical help. In the years before, Beth’s husband started experiencing severe personality changes, struggling with obsessions and paranoia, and starting conflict in the family. The first neurologist diagnosed him with mild cognitive impairment, and an MRI within normal range complicated the diagnosis even further. 

“The doctor sent us home with a recommendation to see a therapist to manage anxiety, try meditation to cope with obsessions, and follow up with him in six months. This seemed so crazy to me at the time, especially given the family history,” writes Beth. “Even though his mother died from an unknown dementia, the neurologist assured us that most dementia is not familial.”

Many appointments later, Beth and her husband underwent genetic testing and counseling, which finally revealed the cause of why Beth’s husband’s life had been turned upside down: frontotemporal dementia. Beth’s husband carried a progranulin mutation, a major genetic cause of frontotemporal dementia accounting for 10%-25% of familial cases.

After the diagnosis, he enrolled in a clinical trial for people living with a progranulin mutation, giving him access to new therapeutics that have the potential to slow his decline.

“The Hidden Dementia Story in My Family’s DNA”

Jackie Shapiro couldn’t understand how her mother could have been diagnosed with FTD without any known family history of dementia. As a descendant of Eastern European Jews, Shapiro writes that much of her ancestry was erased in the Holocaust. For Shapiro, finding out her mother carried a progranulin mutation unlocked a missing piece of her family history.

Further testing revealed that Shapiro’s grandfather also carried the same mutation, and two alleles of TMEM106B. Researchers believe that carrying two alleles can be protective against FTD symptoms, which could explain why her grandfather never showed symptoms even in his 80s.

Shapiro, who worried about her own genetic status and how it might complicate her plans to have children, needed to know if she was at risk of developing FTD.

“I decided to take a genetic test… When the email came saying my results were available, my stomach dropped. Suddenly, all the preparation disappeared. I invited my entire family to join me on the Zoom call to hear the news,” writes Shapiro. “My heart was racing, my palms sweaty, as the genetic counselor began to speak. I was negative.”

Shapiro is an advocate for genetic testing and documents her journey caring for her mother online. She said her mother’s illness sparked a family-wide reckoning with their DNA.

“When my mother was diagnosed, I thought the disease had appeared out of nowhere,” she writes. “Now I understand that it has been written into my family’s story all along…I carry our story forward, speaking out so that others might find answers sooner than we did.”

“Finding the ‘Sunshine’ Amid Alzheimer’s”

Tricia Kano writes about the moment her brother, James, was diagnosed with young-onset Alzheimer’s, and her trips from Ohio to Massachusetts to see him at family gatherings.

“Typical for our family, we had an impromptu sing along: We sang ‘You Are My Sunshine,’ which was a song I sang to him on the FaceTime calls we had every other day,” writes Kano. “Once he began to lose more of his speech … he really seemed to respond to it,” she added.

Kano’s writes that her most memorable moment amidst James’ decline was a day the two spent together doing their favorite things in the coastal town of Scituate, Massachusetts. They watched boats in the harbor, ate ice cream sundaes, and grabbed flowers for James’ wife.

Kano writes: “As a long-distance caregiver, my role was to bring him joy just like all the joy he gave us, give his wife and other family members a little break, and love him with all my heart.”

Get in touch and share your story

VOICES is a collection of essays written by people caring for loved ones living with Alzheimer’s disease or other forms of dementia. The series shares first-hand experiences that illuminate both the challenges and moments of connection in caregiving. If you are interested in sharing your dementia care story, please reach out to lauren@beingpatient.com for details on how to contribute.