North Carolina Institute of Medicine Task Force on Alzheimer’s Disease and Dementia Develops State-Wide Action Plan
By 2025, 89 percent of NC counties will have a greater number of older adults than children. The aging baby boomers in combination with increased longevity of life will cause North Carolina’s older population to double in size in the next 15 years. This influx prompts us to think intentionally about how to support our older community members and their caregivers. As a state we are paying attention to the issues surrounding our aging citizens.
For example, in September 2008, the North Carolina Medical Journal, released an edition titled Healthy Aging in North Carolina. The journal introduces the challenge of healthy aging, in which older adults are able to live disease-free, maintain their physical and mental functioning and actively engage in their communities. The edition draws on the expertise of stakeholders across the state who offer a roadmap for preparing for an increasingly older population.
In addition, the North Carolina Institute of Medicine (NCIOM) is hosting two task forces related to aging that convene stakeholders and organizations on the health issues we face:
NCIOM’s mission is to develop strategy and build collaboration around the greatest health challenges facing our state. The organization just wrapped up the task force on Alzheimer’s disease and related dementia. As our population ages, the occurrence of Alzheimer’s disease will become more frequent. The number of North Carolinians with Alzheimer’s disease and related dementia is projected to increase 31 percent by 2025.
Alzheimer’s disease is the most common form of dementia, which generally refers to a spectrum of symptoms associated with memory and cognitive function loss which can result in an inability to perform daily tasks.
“It touches so many people. Everyone knows someone who suffers from Alzheimer’s, or who cares for someone with dementia,” said Michelle Ries, who heads up the task force.
The task force was a seven-month collaboration to produce an actionable plan for the coming spike in Alzheimer’s disease and related dementia. The collaboration included the North Carolina Department of Health and Human Services, AARP North Carolina, Alzheimer’s NC, the Alzheimer’s Association and LeadingAgeNC.
The group hopes to increase awareness and reduce stigma about the disease, which is a prevalent problem.
“People don’t want that label because it may affect their employment or even personal relationships,” said Ries. This reluctance causes problems for data collection and efficient delivery of care.
Another aim of the task force is to support people with dementia and their families with improved services. “What we’ve found is that it’s very helpful for caregivers to stay active and connected in the community,” said Ries.
Caring for a loved one with Alzheimer’s disease or related dementia can be very taxing. The report targets specific goals for supporting the estimated 444,000 North Carolinians who provide unpaid care for their family member with dementia.
The task force’s action plan will be published in March 2016, and will provide our state with tactical directions for preparing for an aging population in North Carolina.
The work of NCIOM and their partners exhibits North Carolina’s commitment to understanding and preparing for our unique challenges. The message is clear from the North Carolina Medical Journal: “We all need to work together and share the responsibility to increase the quality of life for all North Carolinians.”
Oral health disparity affects all age groups, but is particularly difficult for the elderly. The complications of frail and failing teeth are compounded by the inability to access care. Insurance coverage for oral health is spotty, and Medicare, the public insurance available to the elderly, does not cover oral health.
Many of our aging community members, especially vulnerable and underserved populations, did not grow up with the benefit of water fluoridation, and 25 percent of adults aged 60 are missing many of their original teeth. Besides the painful side effects of oral health issues, missing or weak teeth affect nutrition, as older adults choose softer and potentially less nutritious foods. Twenty-three percent of the elderly population in the U.S. also suffer from gum disease, which is more common in disadvantaged populations.
In North Carolina, we are fortunate to have caring organizations working to collaborate on solutions to the problem of oral health disparity among the elderly. One of these organizations is Access Dental Care, a dentist office on wheels. Access Dental is a non-profit organization that travels to long-term care facilities to meet the needs of elderly patients.
Zulayka Santiago, director of the NC Oral Health Collaborative, reflected on the experience of a day with Access Dental:
“As a newcomer to the world of oral health, I had heard great things about the work of Access Dental Care. Given that words so often fall short in communicating the impact, it was important for me to witness their work in real time. I met them at Rex Health and Rehabilitation in Apex, a new site for them. It was a cloudy Monday morning, but what I witnessed that day would brighten most any day.
I met the van in the parking lot and helped them unload all of their equipment. In just a few minutes a full dental office set up in one of the dining areas! The ease and flow of process signaled to me that those three individuals had performed this routine many times. Providing dental care to individuals who are frail, elderly or who have intellectual or developmental disabilities is not easy (to state the obvious). My brief time with Access Dental Care definitely affirmed this fact. But more importantly, what the experience illuminated for me was that this type of work requires a certain strength of character and commitment to ensure that each patient receives the care they need with compassion and a lightness of heart.
Dr. Bill Milner (dentist), Betsy White (dental hygienist) and Rhonda Little (dental assistant) made a big impression on me that day. As we work to ensure access to optimal oral health for all North Carolinians, it is essential to celebrate the models that are working well and doing a good job of reaching the most vulnerable. I applaud and am inspired by the work of Access Dental Care. I am grateful to have such strong partners within the NC Oral Health Collaborative.”
The Foundation, through the expertise of the NC Oral Health Collaborative, acts as a convener for oral health disparity issues in the state. We work with partners like Access Dental Care to develop strategies and action plans to improve the oral health status of all North Carolinians. For more information on the Oral Health Collaborative, click here.
The Foundation is excited to announce its upcoming organizational name change. On January 1, 2016, we will change our name to the Foundation for Health Leadership & Innovation. Our new name reflects the purpose and direction for our work. We are a foundation from which partnerships and programs providing leadership and innovation in whole-person, whole-community health can thrive.
The Foundation will continue its deep-rooted mission to develop and support innovative programs that advance sustainable quality health services to improve the overall health of communities in North Carolina and beyond.
Thank you for the numerous stakeholders who participated in surveys and focus groups to assist the Foundation in discovering its new name.
Please note that the web and email addresses for the Foundation and its team members will change in January from ncfahp.org to foundationhli.org. All of your previously saved addresses will re-direct for a short period of time so please update the domain at your earliest convenience in the new year. Also, please be on the lookout for the unveiling of a new logo in the Spring of 2016!
On April 14th 2014, Maria Isabel Rego (Bel) launched OHEALL (Oral Health Equity for All) in Winston Salem, NC. OHEALL’s vision revolves around a world of oral health equity for all and its mission is to provide community members and leaders with oral health equity specific community organization tools, resources, and information.
Bel was involved in health equity community outreach and research at the Maya Angelou Center for Health Equity from 2009 until 2013, when she was accepted to East Carolina University’s graduate school. In January of 2014, Bel also completed a one-year social entrepreneurship and civic leadership training at Mobilize, a nonprofit organization in Washington D.C., and this past summer she received her M.A. in Health Education and Promotion from East Carolina University.
As part of her M.A. degree, Bel completed a graduate internship at the NCFAHP under Jacqueline Brown’s guidance at the NC Oral Health Collaborative (NCOHC). During this experience, she helped the NCOHC curate resources for their website, implement the beginning of a social media presence on Facebook and Twitter, and she provided support for the NCOHC’s endeavors in oral health policies and oral health literacy. Besides being off and running with OHEALL, Bel also plans to attend dental school in the near future.
People go to see a provider at a health care institution because of health issues. But what happens when the root causes of patients’ health problems, such as life stress or not having enough healthy food, can’t be resolved in the doctor’s office? National organizations estimate that millions of people have unmet legal or resource needs that have an effect on their health.
Rebecca Whitaker, a Bernstein Fellow Alumni, has been working on the issue of medical-legal partnerships (MLPs) in North Carolina for the past several years. Rebecca has always been interested in the social determinants of health – the environmental, economic, and social factors that can influence health – but a few years ago she had the chance to dig deep into the issue.
Medical-legal partnerships are a nationwide initiative to better integrate medical and legal services, particularly for vulnerable people and populations. MLPs recognize that legal problems can contribute to health problems, and that many vulnerable patients seen by health care providers also have unmet legal needs. Medical-legal partnerships establish formal relationships between health care organizations and legal services agencies so that health care providers can be trained to screen and refer patients with unmet legal needs to an affiliated legal team. The level of integration between medical and legal teams varies across MLP programs. Sometimes, the legal team is fully integrated into the health care team. In other models, legal partners are available at the health care organization for a designated number of clinic hours each week.
Rebecca, who hails originally from Charleston, SC, moved to North Carolina to pursue her Master of Science in Public Health at UNC’s Gillings School of Global Public Health. After school, she worked for five years at the North Carolina Community Health Center Association, most recently serving as the Director of Health Policy & Governmental Affairs. The North Carolina Community Health Center Association is the membership association for the state’s federally qualified health centers, or community health centers. Federally qualified health centers provide access to comprehensive primary medical, dental, behavioral health and pharmacy services for all patients regardless of ability to pay. Over half of NC health center patients are uninsured. There are 34 federally qualified health center organizations in NC. These organizations operate over 180 clinical sites that are located across the state.
When Rebecca heard from her CEO about the Bernstein Fellowship, she realized that the Fellowship would give her the opportunity to work on a project she’d been thinking about but never had time in her day-to-day to pursue. She applied and was accepted as a Fellow in 2011. Rebecca admits that her original Fellowship project proposal was much grander than it was realistic: she wanted to complete a statewide assessment of unmet health-related legal needs among health center patients. Collaborating with her Fellowship mentor, Madlyn Morreale, Supervising Attorney for the Medical-Legal Partnership Program at Legal Aid of North Carolina, Rebecca focused her objectives and developed a pilot project to assess unmet health-related legal needs among patients in a smaller number of health centers. The purpose of the pilot project was to call attention to these unmet needs, to encourage more health centers to consider medical-legal partnerships, as well as to inform future program planning and operations.
The study was conducted at 5 community health centers across North Carolina over a 6-month period. Over 330 health center patients completed a pen & paper survey (available in both English and Spanish). The survey asked what types of legal and resource needs patients had experienced over the past year, and their willingness to discuss these needs with a provider. Over 200 health center staff completed a web-based survey that asked what legal or resources issues the staff thought were most important to their patients, their comfort discussing issues with patients, and their likelihood of screening and referring patients if there was an established referral program for free legal services.
Rebecca says the study results were both affirming and surprising. She was not surprised to learn that a large percentage (70%) of health center patients reported having an unmet health-related legal or resource need. But she was surprised to see that the most commonly reported issues among patients dealt with personal finance, including people that were being harassed by creditors, those that couldn’t make rent or mortgage payments, and others that couldn’t afford to buy food.
Overall, the study results showed the need to develop medical-legal partnerships in community health centers. The data showed that the sickest patients were the most likely to experience a legal or resource need, were the least likely to have sought legal help in the past, and were the least likely to know where to go for help.
Rebecca and her Fellowship mentor, Madlyn, were encouraged to learn that patients were willing to talk to providers about their legal and resource issues, and that health center staff were willing to screen and refer patients for legal assistance. Staff members who were surveyed cited lack of knowledge, lack of resources, and time constraints as the biggest barriers to discussing these issues with patients.
So what now? There are currently 14 North Carolina health care organizations, including health centers and hospitals, engaged in MLPs. Most are in urban areas, yet many high-need communities lack formalized medical-legal partnerships. In order to expand the MLP footprint in NC health centers, Rebecca and her colleagues seek to create a network model that would leverage resources across the state and provide coordinated training and technical assistance for health center staff members and legal partners.
Nationally, MLPs in community health centers are making huge steps forward. Just this year, the U.S. Health Resources and Services Administration (HRSA) formally recognized civil legal aid as an “enabling service” for health centers. Historically, federally qualified health centers have utilized federal grant dollars to provide enabling services like transportation, interpretation and case management to increase access to care for their patients. The recent announcement by HRSA means that health centers can now use those federal funds for enabling services to help connect their patients to legal services and that in the future they may be able to apply for HRSA grants to support medical-legal partnerships.
Though Rebecca’s project has continued beyond the scope of her Bernstein Fellowship, which wrapped up in 2013, she lauds the Fellows program for its excellence in connecting Fellows and Alumni with other health care and policy professionals, and for building a learning community for young healthcare leaders. “We all work in health care, but in very different parts of the health care sector,” says Rebecca. “Through the Bernstein Fellows program, we are able to share ideas and different approaches to tackling similar problems – that exchange of ideas is really fun.”
Rebecca has recently returned to school at UNC to pursue a PhD in Health Policy. Though she’s not focused specifically on MLPs in her schoolwork, she plans to pursue research involving the social determinants of health and the health care safety net. Rebecca says she wants to explore how new health care delivery and payment models can help address the social determinants of health.
And at the same time, Rebecca’s work with MLPs continues. Rebecca and her fellowship mentor continue to write and speak about the importance of medical-legal partnerships in primary care safety-net settings, showing why they are needed across North Carolina.
“I think it’s exciting to engage in cross-sector collaboration and to think more broadly about improving health—beyond simply delivering health care services,” Rebecca says. “The more we can develop partnerships and systems to facilitate improvements in the social determinants of health, we’ll be a much healthier country.”