Providing hope

Help coming for dementia caregivers

The first time I encountered dementia was in 1989 when my grandmother, Hazel, was diagnosed with Alzheimer’s.

Soon after my grandfather passed, caregiving duties fell to my family, and Grandma Hazel lived with us until her passing in 1996. My family lived in a small two-bedroom home back in the 1990s and, to ensure that grandma had her own room, Mom and Dad slept on a fold-out couch every night for nearly seven years.

Not much was known about the disease and there were very few support systems for dementia caregivers. My mother was a nurse by profession. During the day she would care for her patients, then come home to care for grandma and the rest of the household.

Last year the memories of those years began to resurface when we learned of my dad’s dementia diagnosis.

My family is one of many that are navigating the challenges of a disease that strikes indiscriminately. Over 6 million Americans are currently living with Alzheimer’s, according to the Alzheimer’s Association.

In Arkansas alone, an estimated 58,000 seniors over 65 are living with Alzheimer’s. That number is expected to rise to 67,000 by 2025. Nationwide, providers are preparing for an alarming increase in Alzheimer’s because of the aging population and increased risks.

There are multiple challenges when it comes to dementia. There is not a test to confirm a diagnosis, and limited federal funding, which translates to limited treatment options, especially in the many rural counties across Arkansas.

And without a true understanding of what causes the changes in the brain, researchers still struggle to find a way to successfully prevent Alzheimer’s.

These factors alone should concern us. As the prevalence of the disease continues to climb in Arkansas, so does the demand for services for those who are impacted. This includes not only the person living with dementia, but their families as well.

The impact of Alzheimer’s disease and other dementia is felt across state agencies, the workforce, the healthcare system, and Medicaid funding. The impact of the disease exacerbates the need for the state to have a comprehensive plan to address this emerging public-health crisis.

Prior to the mid-2000s, states made varying but overall minimal efforts to support the needs of the dementia population. In 2011, Arkansas became one of the first states in the country to establish a state plan to address the Alzheimer’s crisis.

An independent working group made up of state agency officials, aging-service providers, and nonprofit organizations like the Alzheimer’s Association began meeting in 2018 to initiate the process of updating the Alzheimer’s and Dementia State Disease Plan. The group continued its work throughout the pandemic and, in 2021, it worked to pass legislation that established a permanent Alzheimer’s and Dementia Advisory Council.

The statute ensures that the state stays proactive in its approach by requiring an update to the state plan every four years and reporting on its progress. The most recent update to the plan was released just in the past few weeks.

This proactive approach is necessary to increase public health education, drive risk reduction and expand support services in order to be prepared to address an ever-increasing public-health crisis. The state plan provides state government officials with a road map on how the state can improve its public health response, equip the health-care workforce, expand access to dementia services, and build support systems for individuals living with the disease and their family caregivers.

One of the priority recommendations from the advisory council is to establish a dementia services coordinator position. Throughout the state plan process, it became clear that Arkansas has some pieces of healthcare infrastructure already in place to serve the dementia population. What also became clear is that many of these services remain siloed within these organizations.

Neighboring states have been successful in establishing a dementia services coordinator to oversee those services and meet the rising need for dementia support. A dedicated position at the Department of Human Services would provide support to the advisory council, increase opportunities to secure federal funding for dementia services and programs, and strengthen existing infrastructure to be better prepared to serve the dementia population.

For families like mine who have been personally affected by Alzheimer’s, it is promising to see the state take active steps to begin prioritizing its response to the disease. Access to support services—particularly in rural areas—has been challenging, and the recommendations outlined in the plan provide caregivers like my mom hope that help is on the way.