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.
Linking families with resources
More than 7 million Americans – and about 1,100 residents in La Plata County – suffer from Alzheimer’s disease. The disease is the most common type of dementia, which impairs and degrades cognitive abilities such as memory, language and social skills.
Durango Dementia Coalition founder Pat Demarest said 60% of people with dementia do not realize they have it. The remaining 40% who recognize their ailment are prone to depression.
It takes resolve to “come out” as a person with dementia, she said.
Her husband, who had dementia, dealt with depression before his death in October, she said. She recalled calling psychologists and therapists who told her they would never consider counseling someone with dementia.
She found other gaps in care for dementia patients and set out to connect the dots between resources through the Durango Dementia Coalition.
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.
In this series
Sunday: How one family is dealing with an Alzheimer’s diagnosis and preparing for what may come.
Today: The Durango Dementia Coalition connects the dots between rural services and resources patients are otherwise left to discover on their own.
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.
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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.
Alzheimer’s in Colorado at a glance
About 90,800 Coloradans are living with Alzheimer’s disease, according to the Alzheimer’s Association of Colorado. In 2022, 1,871 people died from the disease.
About two-thirds of those diagnosed are women. People of color are more likely to develop Alzheimer’s; Black Americans are twice as likely as white Americans, and Hispanics and Native Americans are 50% more likely to develop the disease than white Americans, the association said.
Over 178,000 Coloradans are estimated to be serving as unpaid caregivers. They dedicated a combined 309 million hours of support to the tune of $8.2 billion in 2024, according to the Alzheimer’s Association.
Jim Herlihy, spokesman for Colorado Alzheimer’s Association, said in a news release studies show the use of hearing aids slows cognitive decline; managing blood pressure reduces one’s changes of developing mild cognitive impairment; seasonal flu vaccinations can reduce the risk of developing Alzheimer’s; and “ultra-processed” foods contribute to faster cognitive decline.
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.
cburney@durangoherald.com
About this series
Dementia is a disease that cripples the mind by eroding cognitive functions such as memory, language and social skills. Over time, it warps a person’s personality and takes away his or her independence, impacting one’s ability to perform even simple daily tasks.
Alzheimer’s disease alone – the most common type of dementia – affects about 1,100 people in La Plata County and more than 7 million Americans across the country.
Dementia imposes significant physical and financial burdens on families across La Plata County. Though there is no cure for dementia of any kind, patients and their caregivers can live more comfortably with medication and certain lifestyle changes.
In this series, we visit those afflicted, tell stories of family members who endure the long goodbye, and examine the efforts of caregivers and support groups as they shepherd patients and loved ones into the fog.
