In La Plata County, Colorado, an estimated 1,100 individuals live with Alzheimer’s disease, a number that may rise significantly when considering other forms of dementia. Recognizing the pressing need for support, Pat Demarest established the Durango Dementia Coalition in 2022. This organization aims to connect families with vital resources and to enhance awareness around dementia care.
The Coalition, which became a registered 501(c)(3) nonprofit last year, collaborates with organizations like Southwest Colorado Respite Resources. Its primary focus is to compile existing resources, provide direct support to caregivers, and advocate for a greater understanding of dementia. Demarest emphasized that many dementia patients and their families remain unaware of the available assistance, making her mission even more crucial.
Alzheimer’s disease remains the most prevalent type of dementia, affecting over 7 million Americans. In La Plata County alone, the situation is severe, with many families facing the challenges of caring for loved ones who may not recognize their condition. Demarest pointed out that approximately 60% of dementia patients are unaware that they have the disease, while those who do recognize their condition often experience depression.
The Coalition is addressing these gaps in care. Demarest shared her personal journey, having lost her husband to Alzheimer’s in October 2022 after years of caregiving. She highlighted the lack of coordinated support in rural areas, contrasting it with the structured care available for other conditions. “You just get a piece of paper, and it’s a life-ending diagnosis. You’re out there on your own,” she stated, underscoring the urgency of her mission.
Connecting Families with Essential Resources
One of the Coalition’s significant achievements is the caregiver support program, which has distributed nearly $8,000 to various recipients. Demarest acknowledged that despite these efforts, reaching caregivers who could benefit from the program remains a challenge. The need for financial support is acute, as many families struggle under the weight of caregiving responsibilities.
The Coalition also produced a comprehensive resource guide titled “Planning Your Journey: A Care Planning Tool for People with Dementia, Families, and Caregivers.” This 35-page document offers practical advice on living with dementia and navigating available resources.
Demarest is not alone in this endeavor; the Coalition has developed a network of 120 caregivers and a newsletter that reaches approximately 550 individuals. Kim Schooley, vice president of the Coalition, expressed the importance of community support, particularly in rural settings where resources are scarce. “Finding where those resources are is a little bit more difficult,” she noted.
Through increased communication with healthcare professionals, the Coalition has successfully linked patients with palliative care earlier in their diagnosis. This proactive approach not only improves patient outcomes but also alleviates some of the burdens faced by caregivers.
Advocating for Change and Support
Demarest’s involvement extends beyond the Coalition; she is a member of the Colorado Department of Public Health and Environment’s Alzheimer’s Disease and Related Dementias Action Coalition. Her advocacy efforts aim to address the lack of appreciation and awareness of dementia care in rural communities.
The Coalition is continuously seeking partnerships with organizations that can enhance its outreach. Demarest described the situation in Southeast Colorado as “a desert” for dementia resources, emphasizing the necessity for localized support networks.
Financial assistance distributed by the Coalition has been a lifeline for families. For example, Paul Rado, whose wife was diagnosed with Alzheimer’s in 2022, received a $1,000 stipend that he used for home care services. “This is phenomenal,” he said, reflecting on the relief it provided amidst the financial strain. Similarly, Al and Meme Jason utilized their stipend for transportation services, a critical need for many families navigating care.
The broader context reveals that approximately 90,800 Coloradans live with Alzheimer’s, with the disease claiming 1,871 lives in 2022 alone. Demarest’s Coalition not only addresses immediate needs but also strives to improve long-term support for caregivers.
The ongoing challenge of transportation and access to services underscores the Coalition’s importance. With plans to expand into nearby counties, including Montezuma County, the Coalition aims to serve all of Colorado Region 9, which encompasses several counties and tribal areas.
As the Coalition continues to grow, Demarest remains committed to developing an adult day program to offer caregivers much-needed respite and engage dementia patients in meaningful activities. Through these efforts, the Durango Dementia Coalition is making strides in elevating the quality of life for those affected by dementia, ensuring no one has to navigate this journey alone.
