‘The need is great’: Fort Worth dementia nonprofit provides community, education

On a warm Thursday evening, Jim Philpot walked up to a photo of his wife. This was the first time he’d seen the portrait, which was taken by staff at the facility where his wife lives.

In the photo, Lucille Philpot is smiling, looking down at a pair of dolls she’s cradling. The dolls, Jim said, represent the memory Lucille has of her children.

Jim said Lucille no longer recognizes her three sons, all now adults. She is one of the 6 million Americans affected by dementia, according to data from the National Institutes of Health.

Nevertheless, she zealously takes care of her dolls, including tucking them into bed, just as she took care of her children several decades ago.

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As he looked at the photo of his wife of 54 years with both warmth and an unspoken sadness, Jim referenced all of the other portraits around Lucille. Each person on the wall had dementia.

“It affects all of us, but it affects us all slightly differently,” Philpot said.

Lucille’s photo was one of about 70 portraits mounted on walls at the Fort Worth Museum of Science and History Sept. 18. The inaugural Faces of Dementia event was a fundraiser for Dementia Friendly Fort Worth. The organization focuses on providing support, whether it be emotional or educational, to individuals and families impacted by dementia.

Dementia Friendly started in 2018. It is not the only organization in Tarrant County providing support to victims of dementia. However, it is one of the few that focuses less on health care and more on providing guidance and emotional support to those whose families have been rocked by the disease.

Services provided by Dementia Friendly are too many to count. They provide training for regional police departments so that officers can better recognize dementia. The organization also provides certification to businesses that participate in a program to better serve those in the community with the disease.

For those directly affected, Dementia Friendly offers social events, local resources for families, and supports caregivers in managing their difficult task.

Days before the Faces of Dementia event, the organization’s work was recognized by city leaders. On Sept. 16, Fort Worth City Council member Michael Crain awarded Dementia Friendly a proclamation saluting its work.

When presented with the recognition, Gail Snider, the executive director of Dementia Friendly Fort Worth, highlighted the organization’s goal: replace stigma with hope.

“Together, we can make our city a model of inclusion and care,” Snider said.

Services for all who are affected

In between receiving the proclamation and the Faces of Dementia event, Dementia Friendly hosted one of the recurring services — the 5th Street Cafe and Care Partner Support Group.

Every first and third Wednesday of the month, the support group brings both caregivers and dementia patients into a space where they can connect with peers and find a pause from the struggles of day-to-day life.

In one room, the dementia patients participate in sensory activities, including drawing and dancing to Beatles songs. Alongside Dementia Friendly staff and volunteers, medical students from Texas Christian University and the University of North Texas Health Fort Worth provide help by connecting with dementia patients.

In the other room, caregivers and family members also connect. The space gives caregivers a support system for the questions and concerns, ranging from a litany of insurance confusion to reminiscing over the funny moments that can punctuate caring for a dementia patient.

Philpot and Karen Shepherd attend the caregiver support group. Both have been regulars for the last couple of years.

Neither one’s spouse attends the events, as they live in memory care facilities. However, Philpot and Shepherd still come every other Wednesday to decompress.

In addition to the camaraderie of other caretakers, part of the consistent pull to return is having the space to learn the answers to unanswered questions.

“You can Google anything, but you don’t know what to ask,” Philpot said. “The discussions that transpire in that room, they run the gamut from ‘How do you get individual care for your loved one’ to ‘How do you take care of yourself on a day-to-day basis?’”

“Everybody wants to feel like somebody understands them,” Shepherd said in relation to the camaraderie in the room. “And here’s a whole room of people who understand.”

For some, the road of caring for a loved one with dementia leads to volunteering.

Mary Jane Ashton first heard of Dementia Friendly during the COVID-19 pandemic when she was already a caretaker for her husband, Roger, who had the disease. Roger died in 2022, and she began volunteering for the organization about a year ago.

She noted that although it was hard to start volunteering, especially interacting with dementia patients one-on-one, the work was too important to ignore.

“A lot of people know dementia — either they have it in their family or their friends. It is so prevalent in the community,” Ashton said. “At some point, so many people are going to know dementia, and then they will wish that they had resources. And this is a huge resource.”

A growing focus

Over the last 10 years, federal and state institutions have increased research investment into Alzheimer’s disease and dementia.

In the last legislative session, the Texas Legislature approved the creation of the Dementia Prevention and Research Institute of Texas. The institution aims to combat the disease “through the search for effective treatments,” Lt. Gov. Dan Patrick said earlier this year.

Voters will consider creating the institute in the Nov. 4 constitutional amendment election.

What causes dementia?

Several diseases and conditions cause versions of dementia or memory loss. These include:

• Alzheimer’s disease

• Vascular dementia

• Lewy body dementia

• Frontotemporal dementia

• Huntington’s disease

• Wernicke-Korsakoff syndrome

• Creutzfeldt-Jakob disease

• Syphilis

• Parkinson’s disease

• Traumatic brain injuries

  
  

Increasing awareness and care starts on the local level, which is why Faces of Dementia is a fundraiser unlike any other, Snider said.

By highlighting the lives of those with dementia through the portraits and the accompanying stories, the event allowed those with the disease to have moments of joy highlighted instead of the pain and confusion that can often arise.

“The idea is to help the community at large understand that people with dementia are still people,” Snider said. “They still can contribute. They still have thoughts and feelings and ideas.”

Snider said Dementia Friendly hopes the fundraising event becomes a yearly occurrence and awareness of the organization continues to grow.

Want to learn more about Dementia Friendly Fort Worth? Go to their website here!

That desire is shared by the beneficiaries of the nonprofit.

“The need is great in the city, and the ability to talk to people who know what you’re going through is awesome,” Philpot said.

Ismael M. Belkoura is the health reporter for the Fort Worth Report. Contact him at ismael.belkoura@fortworthreport.org..