En español | For the nearly 6 million Americans and their loved ones who currently live with Alzheimer's disease or dementia, navigating the landscape can be incredibly confusing. Add to that our busy lives and the needs of other family members and it can all feel overwhelming.
The big question for many: How do you create an environment in which caregivers and care recipients feel supported and have access to the health care programs they need?
Enter the community of Charleston, West Virginia. A group of dedicated folks decided to focus on improving Alzheimer's and dementia services in their city because those caregiving situations were keeping people housebound and contributing to issues such as isolation, depression and lack of mobility. What they learned and implemented could serve as a blueprint for communities everywhere.
The group's first step was to convene multiple stakeholders from around the state. Working with AARP, they organized representatives from the medical community, bureau of senior services and policymakers. Then they went one step further, inviting groups outside the aging network — from law enforcement, faith denominations, first responders and employers to banks, legal and financial services, the medical association and LGBTQ organizations. They wanted to hear the challenges caregivers were facing, but equally important, to establish the resources available within the community and then identify the gaps.
In a rural state like West Virginia, the miles can separate people, making them feel disconnected from information and assistance. And while resources and support existed, there was no central repository for the information. Many caregivers felt as if they were starting from scratch in the process of discovery.
Lessons From West Virginia
- Create one central repository of information, a website or guide or a single place people can go for information. Don't assume everyone is internet savvy.
- Cultivate an environment of active listeners
- Throw a net wide when it comes to stakeholders
- Think outside the box for innovative solutions
- Look for grants and partnerships that can reach and connect more individuals and resources
- Remember: You don't have to solve every problem at once. Tackle them one by one. Take a small step and move forward.
I met some of the members of the AARP Caregiving Stakeholders Group while moderating an AARP-sponsored caregiving summit in September. The goal was to listen and learn from the panelists who had helped turn West Virginia into a “dementia capable” state.
The program's objective was to increase caregiver awareness and understanding and provide connections to the available resources. They also hoped to facilitate a series of support networks to ensure that caregivers connected with those who had firsthand knowledge, experiences and lessons learned, with an emphasis on the need to take care of the caregivers.
"We started with a shared vision of improving the lives of caregivers and those they care for,” said Helen Matheny, director of collaborative relations and initiatives at West Virginia University Health Sciences Center. “Each entity brought different strengths and resources to the table. The goal was not to duplicate, but to support one another."
Gaylene Miller, AARP West Virginia state director, noted that “the more conversations we had, the more we found we needed. It was a struggle at first, but a few successes made us feel like we were moving in the right direction.”
Miller counts among the early successes the creation of a state advocacy strategy that resulted in more funding for in-home services. They also initiated ongoing communications among caregivers, providers (nonprofit and for-profit), the faith-based community, other advocacy groups and voluntary health organizations, which vastly increased awareness of services.
A creative result of the initiative was a dementia-friendly night at Jim's Steak and Spaghetti House in Huntington. After some basic staff training and information, the restaurant invited everyone in the community to bring their loved ones to eat out and feel comfortable around other diners who understood the issues around the disease and the demands of caregiving.
Another outcome of the summit meetings was a training program for small groups of caregivers, which was very effective in rural areas. They also created a series of public podcasts that discussed the caregiving and dementia resources statewide.
"If we can train and empower caregivers, the quality of care increases and the stress decreases,” said Nancy Cipoletti, director of Alzheimer's programs for the West Virginia Bureau of Senior Services. The training focused on helping caregivers take back some control and take care of their loved ones to the best of their ability. Everyone who completes the training receives a 300-page caregiving guide.
An older male caregiver reported that as a result of the training, he'd stopped waking up panicked at night. Having access to information and community allowed him to feel that he could handle whatever was coming, one way or another.
But the Charleston group didn't stop there. They created a website to provide easy access to a host of caregiver services, including links to AARP and the Bureau of Senior Services.
One service highlighted is a respite program for caregivers that started under a grant 13 years ago and is now funded annually by the West Virginia lottery, another innovative use of funds to keep senior programs robust. To date, more than 300,000 West Virginia family caregivers have been affected by this state initiative.
The group continues to look for ways to innovate.
“Including people and organizations beyond the scope of a traditional caregiver stakeholder event was critical,” said Jane Marks, an AARP volunteer and certified dementia practitioner. “Extending the reach gave everyone the opportunity to understand and discuss not just the challenges for caregivers, but the ways everyone can take small steps toward success."
In the end, one of the perceived challenges of being a rural state was also a strength. “Neighbors know neighbors and tend to be more willing to help or look after one another,” said Matheny. “They don't think of that as caregiving, they think of it as doing the right thing."