Aging Research Report

Alzheimer’s in North Carolina: Comparing Other State Plans

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Students in the Master of Public Policy program at Duke’s Sanford School of Public Policy spent part of their spring semester examining a policy issue for the N.C. Center for Public Policy Research.

The students investigated Alzheimer’s disease in North Carolina, looking at the rates of the disease, caregiving options for patients, and also looked to other states to learn about different options for comprehensive plans.

The students’ report, which includes recommendations for action in our state, is presented in this series of blog posts. Today’s post compares North Carolina’s current Alzheimer’s resources and strategies to plans in Georgia and Minnesota. Read previous posts in the series here:

Part One provides an introduction to Alzheimer’s disease and an overview of prevalence rates

Part Two discusses caregiving options

Part Three takes a look at programs and services supporting Alzheimer’s patients in N.C.

Part Four outlines how coverage for Alzheimer’s care continues to change, and touches on mental health reform in the state

Part Five takes a specific look at Alzheimer’s mortality rates in North Carolina counties

Part Six has a brief overview of the N.C. Task Force on Alzheimer’s

Note: The pictures used in this series are from the Alzheimer’s North Carolina organization, a nonprofit  dedicated to education, support, and advocacy for Alzheimer’s patients and their families. Visit their website here: http://www.alznc.org/.

Pictures also featured from The A.R.C. Community, long-term care facilities in North Carolina for residents with Alzheimer’s. www.thearccommunity.com

Comparing Other State Plans

          This section of the report compares North Carolina’s current Alzheimer’s resources and strategies to those in other states. We chose Minnesota and Georgia for an in-depth comparison due to their unique approaches to combating Alzheimer’s as well as their different resources and political climates. In addition to expanding its Medicaid program under the Affordable Care Act (ACA), Minnesota created a coalition of organizations called ACT on Alzheimer’s to implement its dementia-fighting efforts on a community level. Georgia, which is politically and demographically similar to North Carolina, recently passed its own comprehensive Alzheimer’s plan but has not expanded its Medicaid program. Since Georgia is a neighbor of North Carolina, its plan is particularly significant because it provides a feasible state strategy that addresses the concerns of Alzheimer’s within similar political and financial constraints.

We chose Minnesota and Georgia for an in-depth comparison due to their unique approaches to combating Alzheimer’s as well as their different resources and political climates.

Georgia: Alzheimer’s and Related Dementias State Plan

          In 2014, Georgia’s state legislature passed a state action plan to address its growing population afflicted by Alzheimer’s (Georgia Code § 31-8-300). The plan addresses many areas that the National Alzheimer’s Association views as crucial in a state plan to effectively deal with the increasing prevalence of this disease. The plan is composed of recommendations, not statutory requirements. Many of the recommendations in Georgia’s plan are in the planning and early implementation phases, if they are being implemented at all. However, these recommendations and insights provide a good point of reference for crafting a comprehensive state plan for North Carolina. The Georgia recommendations address the following topics: 1

1. Public awareness:
     ○ Providing public health awareness, education, and resource information through the Georgia Department of Public Health’s (GDPH) website and media releases.
     ○ Creating culturally sensitive information designed to increase awareness about dementia, decrease the associated stigma, and promote early diagnosis using materials developed by the AARP, Area Agencies on Aging, the Alzheimer’s Association, the Centers for Disease Control and Prevention, the Georgia Department of Human Services Division of Aging Services, and other organizations.

2. Early detection and diagnosis of Alzheimer’s:
     ○ Mandatory education for physicians and other health care providers about the importance of early diagnosis and providing appropriate tools and training.
     ○ Assessment of all Medicare patients for cognitive deficiencies during their Medicare Annual Wellness Visits.
     ○ Support for faith- and community-based organizations to provide early detection, education, and resources for individuals and families affected by Alzheimer’s.

3. Case management:
     ○ Recording a diagnosis of Alzheimer’s or dementia in individuals’ medical records, as well as the State Alzheimer’s Disease and Related Disorders Registry, for complete and continuous medical information and coverage.
     ○ Providing patients discharged from a hospital, nursing facility, or emergency room with individualized, appropriate discharge plans by specialized geriatric caseworkers in collaboration with the patient, their families, their physicians, and other health providers. Discharge planners in these care settings should provide region-specific, culturally appropriate resources.

4. Quality of care:
     ○ Instituting measurable quality standards for dementia care in such state-funded services as Medicaid State Plan services and nursing homes.
    ○ Creating ER-specific protocols on appropriate treatment of those with dementia.

5. Health care system capacity and development:
     ○ Establishing recruitment plans for geriatric direct care and health care providers.
     ○ Providing tuition waivers and tax breaks to new low-income workers in the field.
     ○ Developing community college and high school allied health career programs.
     ○ Collaborating with the Office of Workforce Development to identify resources available for supporting vulnerable workers such as case management, career counseling, educational planning services, transportation, and childcare.

6. Alzheimer’s training:
     ○ Creating evidence-based training programs for such targeted audiences as law enforcement, behavioral health professionals, emergency care workers, and general health care professionals (GADHS “Georgia Alzheimer’s Disease and Related Dementias State Plan,” 2014).
     ○ Developing training programs that teach early warning signs of dementia, dementia care and management, and behavioral strategies for community and faith-based organizations.
     ○ Instituting a specific “dementia” track for medical students and residents, as well as providing general education on dementia for all health care workers in school.

7. Needs of caregivers:
     ○ Encouraging state agencies to provide training and informational materials to family caregivers, especially in rural areas.
     ○ Evaluating the cost and feasibility of developing state- and/or federally-funded caregiver support programs for those who do not qualify for Medicaid services.
     ○ Increasing funding for caregiver access to respite services, such as adult day care organizations, volunteer-based respite programs, and other sources.
     ○ Creating financial support to help family caregivers keep their family members with dementia at home longer by providing reimbursement for personal care services, specialized medical supplies, and respite care.

8. Long-term care:
     ○ Funding alternative long-term care options in addition to nursing homes.
     ○ Creating incentives for service providers delivering long-term dementia care, helping to finance “aging in place” housing such as naturally occurring retirement communities and villages.
     ○ Reimbursing nursing homes and personal care homes that provide person-centered services for people with dementia.

Minnesota’s Strategy to Prepare for Alzheimer’s: Budgetary, Social, and Personal Impacts

        In 2009, Minnesota’s state legislature called on the Minnesota Board on Aging to assess the future needs of Alzheimer’s patients in Minnesota. The Board created the Alzheimer’s Disease Working Group, which studied the status of Alzheimer’s in Minnesota and made recommendations to the legislature. The Working Group delivered its recommendations in early 2011. A subgroup of the Working Group’s participants then formed an organization called Prepare Minnesota for Alzheimer’s to push for implementation of the recommendations.

        Key recommendations include the following:
• Creating a multi-year public awareness campaign to improve Alzheimer’s awareness among the population and health care providers.
• Developing a website to inform patients, caregivers, and health care providers about the importance of early diagnosis.
• Increasing health system capacity to meet the needs of Alzheimer’s patients and caregivers (Minnesota Board on Aging, 2011).

Minnesota’s legislature asked Prepare Minnesota for Alzheimer’s to implement these and other state recommendations.

 

Photo Credit: A.R.C. Community in Dunn, N.C.
Photo Credit: A.R.C. Community in Dunn, N.C.

ACT on Alzheimer’s of Minnesota

        In 2013, Prepare for Minnesota changed its name to ACT on Alzheimer’s. It is now a volunteer-driven organization that includes 60 public and private organizations and more than 500 individuals.

        It focuses on achieving five goals:
1. Identification and investment in approaches that reduce costs and improve care.
2. Increase the early detection of Alzheimer’s and improve ongoing care and support.
3. Support caregivers by providing resources and in-person support.
4. Equip communities to be “dementia capable.”
5. Raise awareness of dementia and reduce associated stigmas (ACT on Alzheimer’s, 2014).

Minnesota’s ACT initiative has the potential to save the state between $62 million and $250 million in direct care costs over a 15-year period (Long et al., 2014).

        If more communities participate, the savings will be even greater. Alzheimer’s patients will be able to remain in the community longer, and communities will be better prepared to address their needs (Long et al., 2014).

        ACT is funded primarily through Minnesota state foundations. Many of them are not traditional donors to Alzheimer’s research but more focused on community development. The biggest contributions come from The Saint Paul Foundation, the F.R. Bigelow Foundation, Blue Cross MN, and the Medica Foundation. ACT does not appeal to individual donors because they are the main donors to the national Alzheimer’s Association, a close partner of ACT. ACT receives in-kind support from the state of Minnesota through partnerships with state agencies, but no direct funding. ACT’s annual operating budget for 10-15 communities is approximately $500,000, most of which pays for infrastructure and technical assistance (Olivia Mastry, 2015).

        A distinctive feature of ACT is its collaborative structure in which no single organization owns, controls, or funds the initiative.

        A leadership council of approximately 45 leaders from the health care, long-term care, academic, community, government, business, faith, funding, and other nonprofit sectors guides its strategy. A management steering team is responsible for operational guidance and oversight. Six leadership groups of stakeholders and experts are in charge of implementing the strategy in their focus areas (National Alliance for Caregiving & Alzheimer’s Foundation of America, 2014).

        ACT has a Community Toolkit offering guidance to Minnesota communities in addressing their growing Alzheimer’s populations. The toolkit focuses on the four following phases:
1. Convening key community leaders.
2. Assessing current strengths and gaps with respect to community dementia capability.
3. Analyzing community needs to identify and prioritize issues on which stakeholders are motivated to act.
4. Acting together to establish implementation plans to achieve priority goals and measure progress.

Credit: ACT on Alzheimer's Toolkit, Minnesota
Credit: ACT on Alzheimer’s Toolkit, Minnesota

        The toolkit includes actions, resources, timeframes, and best practices to support community efforts. Once communities decide which goals to pursue, the toolkit provides a library of best practices for implementing those goals (Alzheimer’s Europe, 2013). 2 ACT offers additional toolkits for all sectors of the community, including clinical, business, legal, financial, transportation, and other areas. As of July 2014, 32 action communities are working in all regions of the state. These include geographic-based, faith-based, ethnic, and cultural groups. Four communities are developing culturally specific programs for their large African- American and Latino populations (Olivia Mastry, 2015).

        ACT also developed provider tools for primary care physicians, community-based providers, care coordinators, patients, and caregivers, which include:
1. A protocol practice tool for cognitive impairment.
2. An electronic medical record decision support tool for dementia care.
3. A protocol practice tool for mid- to late-stage dementia.
4. Care coordination practice tools.
5. Tips and action steps to share with a person diagnosed with Alzheimer’s (ACT on Alzheimer’s, 2015). 3

 

Note: Here is information about this student project, provided by the Duke Sanford School of Public Policy.

This student presentation was prepared during the spring of 2015 in partial completion of the requirements for PUBPOL 804, a course in the Master of Public Policy Program at the Sanford School of Public Policy at Duke University. The research, analysis, policy alternatives, and recommendations contained in this report are the work of the student team that authored the report, and do not represent the official or unofficial views of the Sanford School of Public Policy or of Duke University. Without the specific permission of its authors, this report may not be used or cited for any purpose other than to inform the client organization about the subject matter. The authors relied in many instances on data provided to them by the client and related organizations and make no independent representations as to the accuracy of the data.

 

 

  1. Our summary of the Georgia plan is based on the Alzheimer’s Association’s 2015 “State Alzheimer’s Disease Plans” document. ↩
  2. See the ACT Community Toolkit: http://www.actonalz.org/toolkit ↩
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