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 sets out recommendations for North Carolina, including work that can be addressed now, as well as longer-term recommendations that will require additional resources. 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
In formulating a state plan for Alzheimer’s, North Carolina should draw on Minnesota and Georgia’s state Alzheimer’s plans, in addition to creating strategies to address its own unique challenges. Minnesota and Georgia’s plans feature several common themes. Both plans focus on caregiver support, early diagnosis, community engagement, public awareness, and standardized care practices.
Following is a set of recommendations for North Carolina based on these plans, guidelines from the Alzheimer’s Association, the North Carolina Task Force on Alzheimer’s, and conversations with Alzheimer’s stakeholders in North Carolina. We would also recommend that the North Carolina Task Force on Alzheimer’s disease, in formulating its recommendations to the state, consider measures similar to the following:
Recommendations to address North Carolina’s current and future needs of
The following recommendations are low-cost, easily implementable methods of dealing with Alzheimer’s in North Carolina.
1. Create a public-private coalition modeled after Minnesota’s ACT This volunteer-driven coalition will give local authorities and communities the flexibility to identify their unique goals and challenges while preparing their communities for an increase in Alzheimer’s cases. Evidence-based toolkits can guide communities through the process. North Carolina can borrow from ACT and adapt it to address North Carolina’s unique challenges. Many of the following recommendations can be implemented through this coalition.
2. Establish statewide standards of care for Alzheimer’s patients in line with NAPA.
Uniform standards of care will streamline the diagnosis and treatment of Alzheimer’s, as well as improve patients’ quality of care.
3. Develop coordinated care plans for newly diagnosed Alzheimer’s patients.
These plans include input from the patient, the patient’s caregivers, and the patient’s providers. The care plans will aim to prolong patient independence and community residency.
4. Develop minority-specific outreach programs.
Minority-specific outreach programs will be important for increasing awareness of Alzheimer’s, as well as improving caregiver resources in communities where the disease may be particularly stigmatized or under-diagnosed. Increasing awareness and early diagnosis in ethnic communities particularly susceptible to Alzheimer’s can help caregivers and patients plan for the disease.
5. Establish an early diagnosis and data collection protocol.
Early diagnosis will allow caregivers and patients more time to make informed decisions and weigh their options. A data collection protocol will allow better communication between care providers, improving quality of care and reducing inefficiencies.
6. Create a tax form option to donate to Alzheimer’s research.
Tax form contributions will support the efforts of North Carolina non-profits, educational institutions, and medical facilities in their research to find a cure for Alzheimer’s.
These recommendations address the needs of caregivers and will require substantial initial expenditures. Over time, however, these policies have the potential to keep Alzheimer’s patients in their homes or communities and out of nursing homes.
7. Expand Project C.A.R.E.
Expanding Project C.A.R.E. will improve caregiver access to resources and respite care, especially in low-income and rural areas. Expanding the services that C.A.R.E. provides and budgeting for respite care will postpone nursing home placement.
8. Increase the accessibility and capacity of adult day care and respite services.
Adult day care and respite services could be expanded by raising the enrollment cap on the CAP/DA waiver and increasing state funding for respite programs like Project C.A.R.E. and FCSP (Family Caregiver Support Program).
9. Provide caregivers with tax incentives and unemployment benefits.
Caregiver incentives and unemployment benefits will increase caregiver flexibility and reduce caregiver stress. Caregiver benefits will also reduce reliance on Medicaid to care for Alzheimer’s patients. With more financial stability provided by unemployment benefits and tax incentives, fewer caregivers may feel the need to spend down their assets in order to qualify for Medicaid.
The following recommendations present high initial cost options. Yet they will be worthwhile and cost-effective in the long run as part of a wider legislative initiative.
10. Create financial incentives to encourage new long-term care organizations.
North Carolina currently has a low Medicaid reimbursement rate that is unattractive to long-term facilities housing Medicaid patients. Financial incentives will attract long-term care organizations that use innovative care or payment model systems and have demonstrated cost savings in other states.
11. Establish tax incentives for individuals working in geriatrics.
Tax deductions or credits for geriatric health care providers, direct care workers, and caseworkers will encourage expansion of capacity and care quality in these job fields.
12. Increase the Medicaid reimbursement rate and extend it to all disabled Medicaid beneficiaries.
Increasing the Medicaid reimbursement rate will expand nursing home access, allowing caregivers to work full-time and generate income that will contribute to higher tax revenue for the state.
Action must be taken in North Carolina to improve the quality and accessibility of care that Alzheimer’s patients and their caregivers receive. With the vast amount of caregiving being provided by informal caregivers, North Carolina would benefit immensely by targeting improvements at informal care in the form of financial incentives and caregiver support programs.
However, some patients do not have the option of remaining at home and most will end up in a formal care setting toward the end of their disease trajectory. For these reasons, improvements must also be made to the state’s formal care services. Statewide and local initiatives from across the country have provided North Carolina with valuable examples of Alzheimer’s plans. As the baby boomer generation ages and more North Carolinians are diagnosed with Alzheimer’s disease, the state must take immediate action to address the needs of these individuals and their families.1
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.
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