An estimated 1,100 people with Alzheimer’s disease live in La Plata County, according to Pat Demarest, founder of the Durango Dementia Coalition. There could be another 20% of county residents living with other types of dementia.
Though resources for dementia patients and caregivers are ready for the taking, not enough people know about them, she said.
She set out to change that in 2022. She founded the Durango Dementia Coalition, which teamed up with Southwest Colorado Respite Resources and became a full-fledged 501(c)(3) nonprofit last year.
The Coalition sought to compile lists of existing resources, to raise money to support caregivers directly, to advocate for dementia patient support and to erase the stigma surrounding the disease.
About $8,000 total has been given to nine recipients after a caregiver support program launched several months ago, she said. The Coalition is struggling to reach other caregivers who could benefit from the program – people who need the financial support the most.
Demarest said she lost her husband to Alzheimer’s disease – the most common form of dementia – in October after caring for him for years. In 2022, she moved to Denver where more resources were available.
She formed the Durango Dementia Coalition that same year, inspired and dismayed after she witnessed firsthand the lack of coordinated support for rural dementia patients and their caregivers.
Speaking from her experience as a retired registered nurse, she said there are clinical pathways for other diseases and conditions. When someone is discharged after being treated for a heart attack, they go to cardiac rehab, she said. They have follow-up appointments.
“None of that exists for this particular disease. You just get a piece of paper and it’s a life-ending diagnosis and you’re out there on your own,” she said. “It’s terrible. It’s atrocious.”
The Coalition’s first goal was to locate existing resources in Durango and La Plata County, Demarest said. That proved to be no easy task.
She said the Alzheimer’s Association and the state of Colorado have attempted the same in the past, but, lacking the knowledge only attainable by being immersed in a rural community, listed resources were often inaccurate.
She wrote the majority of a 35-page compilation of local, state and federal resources for dementia patients and their families called “Planning Your Journey: A Care Planning Tool for People with Dementia, Families, and Caregivers.”
It is full of practical advise for living with dementia; communicating with medical care teams; and local, state and federal resources for dementia patients and caregivers.
The Coalition began developing a network of caregivers and a newsletter to distribute to “Dementia Friends,” those whom the Coalition was created to serve and connect.
The caregivers network is currently 120 members strong, and the newsletter – written by Kim Schooley, Durango Dementia Coalition vice president – is distributed to about 550 people, Demarest said.
“That really helps people so they’re not just doing this alone,” Schooley said. “Rural areas are difficult. We’re not Denver. There are not 10 support groups available. So finding where those resources are is a little bit more difficult.”
The Dementia Friends consist of physicians, care providers, social workers and others, she said.
“A lot of it is raising the awareness in the area, making sure that people understand what programs are here,” she said. “We’ve developed more communication with the medical community.”
She said one significant result of the Coalition’s efforts is getting people diagnosed with dementia connected to palliative care much earlier in the process.
Demarest said she is a member of the Colorado Department of Public Health and Environment’s Alzheimer’s disease and Related Dementias Action Coalition.
“I became very aware of the lack of appreciation of dementia in the rural area,” she said.
She is on the hunt for any organizations that can serve as a backbone for the Coalition’s goal to share information with other rural areas.
“It’s a desert out there,” she said. “Especially in Southeast Colorado. It’s really abysmal.”
The idea is to distribute a bare-bones version of “Planning Your Journey,” stripped of La Plata County-specific information, for other areas to fill in the blanks with their local resources.
“Pardon my language, but it’s a (expletive) to keep up,” she said. “That’s one of the reasons the state can’t do it. You’ve got to be feet on the ground.”
The financial aid distributed by Durango Dementia Coalition has helped families pay for extra care and services like transportation.
La Plata County resident Paul Rado, whose wife, Jackie, was diagnosed with Alzheimer’s in 2022, said he received a $1,000 stipend from the Coalition that has proved tremendously helpful.
“This is phenomenal,” he said. “It’s a good program and it helps people with the financial burden that we already have. You get a little extra. $1,000 isn’t a lot, but it does help.”
He said he used the stipend to help pay for Comfort Keepers Home Care services for his wife.
“It’s nice to have somebody to come in and take care of Jackie while I go do errands or whatever. Hoping to go skiing pretty soon,” he said. “I have a girl coming in Thursday to watch her for that. It’s really nice that you have volunteers out there that are willing to watch your patient or your loved one.”
Al and Meme Jason received a $1,000 stipend that helped pay for transportation services, though transportation is still a significant challenge to overcome, Meme said.
Al was diagnosed with Alzheimer’s last year and said he expects his driving days are coming to an end.
Demarest said the Coalition’s caregiver aid packages range from $250 to $1,000. Applications for the program are online at bit.ly/3MEpvrT.
The Coalition has largely gotten by with grants and donations, Demarest said.
“We’ve had angels who keep coming in and helping us. It’s just – it blows me away,” she said.
Virtually all of the Coalition’s work is performed voluntarily, she said. It has little overhead expenses. Two people have worked for free on the organization’s website and a couple more have performed free grant writing.
Funding for the caregiver aid program is largely community-funded, she said.
The Coalition’s core team consists of the Board of Volunteers – Demarest; Schooley; Susan Hicks, treasurer; Stacey Zwirn, social media director and founder of Southwest Colorado Respite Resources; Kim Martin and Karen McManus, co-directors of community relations.
Hicks, Demarest and Schooley are caregivers emeritus – they were caregivers until their loved ones died, Demarest said.
Martin has Alzheimer’s and has written an award-winning series of columns, “Alzheimer’s, depression,” about her own experience for The Durango Herald.
Other core members include Sheila Lee, a co-facilitator for the Durango Dementia Caregiver Support Group, and Bob Moskaitis, who assists St. Columba’s Alzheimer’s Support Group, Demarest said.
Demarest said one of the Coalition’s next goals is to create an adult day program to provide caregivers a break and to keep dementia patients entertained.
The Coalition is currently established in La Plata County and Pagosa Springs in Archuleta County. She said it is expanding into Montezuma County, and aims to serve all Colorado Region 9 counties, which also include Dolores and San Juan counties and the Southern Ute and Ute Mountain Ute Indian tribes.