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. The third part, posted today, takes a look at programs and services supporting Alzheimer’s patients in our state. Read Part One in the series, which provides an introduction to Alzheimer’s disease and an overview of prevalence rates, and Part Two, which discusses caregiving options.
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
National Alzheimer’s Project Act (NAPA)
In 2011, Congress unanimously passed the National Alzheimer’s Project Act (“NAPA”) (42 U.S.C. § 11201). It required the creation of a national strategic plan to address the increasing number of people suffering from Alzheimer’s (Alzheimer’s Association, 2014).
| The five goals of NAPA include:
• Effectively treat or prevent Alzheimer’s by 2025.
• Optimize care quality and efficiency.
• Expand supports for people with Alzheimer’s and their families.
• Enhance public awareness and engagement.
• Track progress and drive improvement (Alzheimer’s Association, 2011)
NAPA requires an annually updated plan outlining how to overcome Alzheimer’s, annual recommendations for priority actions, an annual evaluation of Alzheimer’s funding, and the creation of an Advisory Council on Alzheimer’s Research, Care, and Services (U.S. Department of Health and Human Services, 2014). The Advisory Council consists of twenty-two board members who coordinate with federal and other agencies conducting research on care and services for Alzheimer’s patients.
The Advisory Council’s most recent update in 2014 emphasizes that NAPA’s objectives should be carried out through “optimizing existing resources and coordinating ongoing activities, supporting public-private partnerships, and transforming the way we approach Alzheimer’s” (Alzheimer’s Association, 2014, 4). Other update recommendations include regularly convening an Alzheimer’s disease Research Summit, soliciting both public and private inputs on the direction of Alzheimer’s research, and creating a timeline for achieving milestones. A few states already had comprehensive Alzheimer’s plans in place before NAPA. Now 42 states and the District of Columbia have state plans.
Alzheimer’s Services in North Carolina
North Carolina currently does not have a comprehensive statewide plan to address Alzheimer’s disease. The state offers six relatively small programs that support Alzheimer’s patients and caregivers.
1. The Family Caregiver Support Program (FCSP):
The NC Division of Aging and Adult Services administers the state’s FCSP. 17 Area Agencies on Aging provide FCSP services. The program provides information to caregivers about available services, helps caregivers access these services, and connects caregivers with individual counseling and support groups. It also offers caregiver training in health, nutrition, financial literacy, and problem solving. FCSP has a respite service that provides temporary relief to caregivers as well (North Carolina’s Family Caregiver Support Program, 2015).
2. Caregiver Alternatives to Running on Empty (C.A.R.E.):
In 2001, Project C.A.R.E began as a pilot program in North Carolina. The federal government provided the initial funding for C.A.R.E. through an Alzheimer’s disease Demonstration Grant. The federal grant ended in 2007 (Kelly and Williams, 2007). C.A.R.E. is now primarily state-funded. Family consultants operate at three C.A.R.E. partner locations throughout the state to coordinate regional support networks. The family consultants provide guidance to families and direct them to local resources. C.A.R.E. services are primarily directed toward rural or low-income caregivers.
C.A.R.E. formerly offered respite services to caregivers but no longer has sufficient funding to continue these services. At the first North Carolina Task Force meeting on Alzheimer’s and Related Dementias in March 2015, Mark Hensley, Director of Project C.A.R.E., said that the program was no longer able to offer families an annual stipend of $2,500 for caregiver support and respite. According to Hensley, total 2015 state funding for Project C.A.R.E. is now $300,000 for services in 100 counties. The 2013 NC state budget provided $500,000 for C.A.R.E. but cut the same amount from the HCC Block Grant. (Hoban, 2013).
3. The Home and Community Care (HCC) Block Grant:
The NC General Assembly established the HCC Block Grant in 1992 to provide home- and community-based services to seniors in North Carolina (NCGS § 143B-181.1(a)(11)). The NC Division of Aging administers the HCC Block Grant and the Area Agencies on Aging disburse funding to counties. The state legislature cut HCC Block Grant by nearly $1 million in the 2014 state budget, leaving about $31.3 million in total funding (Hoban 2015). Congress passed the Older Americans Act (OAA) in 1965 to assist seniors with nutrition, transportation, and caregiver support (42 U.S.C. § 35). The OAA originally provided 45 percent of the HCC Block Grant funding in North Carolina (Home and Community Care Block Grant, 2013). The OAA expired in 2011, and Congress has not reauthorized it (Reauthorize the Older Americans Act, 2015).
4. North Carolina’s Silver Alert Program:
In 2007, North Carolina’s Center for Missing Persons adopted the Silver Alert Program to protect Alzheimer’s and other mentally impaired elderly individuals. Under the Cognitive Impairment Assistance Law, local and state law enforcement officials work together to protect the elderly population (North Carolina General Statutes § 143B-1022). Similar to an Amber Alert, a Silver Alert helps to locate missing elderly persons. Once a caregiver reports that a person with dementia or a cognitive impairment is missing, law enforcement officials, television broadcasters, and radio personnel are alerted.
5. The Community Alternative Program for Disabled Adults (CAP/DA):
CAP/DA is a Medicaid waiver available to low-income adults 18 and over who are Medicaid-eligible for nursing home care because of a disability. A recipient of the CAP/DA waiver can receive Medicaid-funded adult day care services, case management services, medical and home care supplies, aide services, meal delivery, and respite care. As long as these costs do not exceed the costs of nursing home care, the recipient will remain eligible. As of December 2013, North Carolina had a statewide limit on CAP/DA waivers of 11,214 and a waiting list of over 8,000 disabled adults (Bratts-Brown, 2013). When CAP/DA slots become available, priority goes to the neediest individuals, including those who wish to leave a nursing home for a community care setting. Waitlisted individuals 55 years or older are referred to the PACE program if they live in a PACE catchment area.
While a number of services are available to Alzheimer’s patients in North Carolina, no unified program exists that provides comprehensive services to these patients or their caregivers.
6. The Program for All-Inclusive Care for the Elderly (PACE):
The PACE program currently serves over 700 low-income North Carolinians 55 years or older who qualify for nursing home care under Medicaid but wish to remain at home (NC PACE Association: History and Growth, 2015). PACE operates at 11 locations in North Carolina and serves 38 counties (NC PACE Association: PACE Sites, 2015). Ninety-seven percent of PACE participants are dual-eligible for Medicaid and Medicare (Shaw, Response to NC Department of Health and Human Services Division of Medical Assistance Request For Information RFI-DMA, 100-13). Under its capitated-funding model, PACE receives two standard prepayments per enrollee each month, one from Medicaid and one from Medicare. The payments are pooled to cover all services provided to PACE enrollees, including acute medical care, in-home services, and access to a PACE center which provides clinical services and adult day care. About half of PACE enrollees have Alzheimer’s or dementia. Most need assistance with one or more activities of daily living (Shaw, Response to NC Department of Health and Human Services Division of Medical Assistance Request For Information RFI-DMA, 100-13).
While a number of services are available to Alzheimer’s patients in North Carolina, no unified program exists that provides comprehensive services to these patients or their caregivers. And due to funding constraints on Project C.A.R.E., the HCC Block Grant, and the CAP/DA waiver, many people who successfully locate services are still unable to benefit from these programs.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.
- Works Cited for Full Project
ACT on Alzheimer’s. (2014). Retrieved February 17, 2015, from ACT on Alzheimer’s: http://actonalz.org/
Alzheimer Europe. (2013). P8. Dementia-friendly communities. Retrieved February 19, 2015, from
Alzheimer Europe: http://www.alzheimer-europe.org/Conferences/Previousconferences/ 2013-St-Julian-s/Detailed-programme-abstracts-and-presentations/P8.-Dementia-friendly-communities
Alzheimer’s Association “State Alzheimer’s Disease Plans.” (2015, February 1). Retrieved February
20, 2015, from http://act.alz.org/site/DocServer/STATE_AD_PLANS.pdf?docID=4641
Alzheimer’s Association. (2011). The National Alzheimer’s Project Act.” Alzheimer’s Association,
2014. Retrieved April 9, 2015, from http://napa.alz.org/
Alzheimer’s Association. (2014). “National Plan to Address Alzheimer’s Disease,” Alzheimer’s
Association, 2014. Retrieved April 9, 2015, from http://act.alz.org/site/DocServer/NatlPlan.pdf?docID=5568
Alzheimer’s Association. (2015) 2015 Alzheimer’s disease Facts and Figures. Alzheimer’s
Association. Retrieved April 9, 2015, from http://www.alz.org/facts/downloads/facts_figures_2015.pdf
Assistant Secretary for Planning and Evaluation. (2014). National Alzheimer’s Project Act. U.S.
Department of Health and Human Services, 2014. Retrieved April 9, 2015, from http://aspe.hhs.gov/daltcp/napa/
Bratts-Brown, W. (2013, December 27). Memorandum: CAP/DA Slot Utilization and Waitlist Management. Retrieved April 8, 2015, from http://www.ncdhhs.gov/dma/cap/CAPDA_Slot_Utilization_Waitlist_Mgmt.pdf
Bynum, J. (2014). The Long Reach of Alzheimer’s disease: Patients, Practice, And Policy. Health Affairs, 33(4), 534-540. Retrieved February 2, 2015, from http://content.healthaffairs.org.proxy.lib.duke.edu/content/33/4/534.full
Carter, Christine L., Resnick, Eileen M, Mallampalli, Monica, Kalbarczyk, Anna. (2012) Sex and Gender Differences in Alzheimer’s disease: Recommendations for Future Research. Journal of Women’s Health 21(10): 1018-1023.
Centers for Disease Control and Prevention, National Center for Health Statistics. Compressed Mortality File 1999-2013 on CDC WONDER Online Database, released October 2014. Data are from the Compressed Mortality File 1999-2013 Series 20 No. 2S, 2014, as compiled from data provided by the 57 vital statistics jurisdictions through the Vital Statistics Cooperative Program. Accessed at http://wonder.cdc.gov/cmf-icd10.html on Apr 5, 2015 2:14:16 PM
Centers for Disease Control and Prevention. Healthy Aging: Alzheimer’s Disease. Retrieved April 17, 2015 from http://www.cdc.gov/aging/aginginfo/alzheimers.htm
Chin, Alexander L., Selamawit Negash, and Roy Hamilton. (2011) Diversity And Disparity In Dementia. Alzheimer Disease & Associated Disorders 25(3): 187-195.
Facilities with Special Care Units. (2015, March 16). Retrieved March 20, 2015, from http://www.ncdhhs.gov/dhsr/acls/pdf/sculist.pdf
Foldes, S. and Long, K (2014, May).The Minnesota Economic Model of Dementia: Demonstrating Healthcare Cost Savings with the New York University Caregiver Support Intervention. Retrieved April 11, 2015, from
Fox, C., Maidment, I., Mooniz-Cook, E., White, J., Thyrian, J. R., Young, J., et al. (2013). Optimising primary care for people with dementia. Mental Health in Family Medicine. 10 (3), 143–151.
Gaugler, J. E., Yu, F., Davila, H. W., & Shippee, T. (2014). Alzheimer’s disease And Nursing Homes. Health Affairs, 33(4), 650-657. http://content.healthaffairs.org.proxy.lib.duke.edu/content/33/4/650.full.pdf+html
Georgia Department of Human Services “Georgia Alzheimer’s Disease and Related Dementias State Plan.” (2014, June 23). Retrieved February 19, 2015, from https://gov.georgia.gov/sites/gov.georgia.gov/files/related_file/document/SB%2014.pdf
Grant launches collaborative effort to combat Alzheimer’s (2015). Retrieved April 11, 2015, from http://dukeforward.duke.edu/article/grant-launches-collaborative-effort-to-combatalzheimers.
Group Homes/Special Care Units. (2013, March 6). Retrieved February 17, 2015, from http://www.wral.com/news/state/nccapitol/asset_gallery/11998359/
Gurland, Barry J.; Wilder, David E.; Lantigua, Rafael; Sterm, Yakov; Chen, Jiming; Killeffer, Eloise H.P., Mayeux, Richard. (1999). Rates of dementia in three ethnracial groups. International Journal of Geriatric Psychiatry, 14, 481-493.
Hampel, H., Frölich, L., Hoffman, W., Prvulovic, D., Riepe, M. W., Stefan, T., et al. (2011). The future of Alzheimer’s disease: The next 10 years. Progress in Neurobiology, 95, 718–728.
Hebert, L. E. (2001). Is The Risk Of Developing Alzheimer’s disease Greater For Women Than For Men? American Journal of Epidemiology 153 (2), 132-136.
Hebert, Liesi E.; Weuve, Jennifer; Scherr; Paul A., et al. (2013, February 6). Alzheimer disease in the United States (2010−2050) estimated using the 2010 census. Neurology published online. DOI: DOI 10.1212/WNL.0b013e31828726f5
a. Hoban, R. (2012, November 4). Rate Cuts Threaten Dementia Care Facilities. Retrieved February 17, 2015, from http://www.northcarolinahealthnews.org/2013/11/04/rate-cuts-threatendementia- care-facilities
b.Hoban, R. (2012, December 14). Alzheimer’s Patients Caught Up in State Medicaid Service Changes. Retrieved February 17, 2015, from http://www.northcarolinahealthnews.org/2012/12/14/alzheimers-patients-caught-up-in-statemedicaid- service-changes/
Hoban R. (2013, February 4). No Fix in Sight Yet for Alzheimer’s Special Care Units. Retrieved April 28, 2015, from http://www.northcarolinahealthnews.org/2013/02/04/no-fix-in-sightyet- for-alzheimers-special-care-units/
Hoban, R. (2013, June 11). House & Senate Budgets Compared. Retrieved April 7, 2015, from http://www.northcarolinahealthnews.org/2013/06/11/house-senate-budgets-compared/).Hoban, R., Singh, J., &
Namkoong, H. (2014, August 1). Hospitals, Adult Care Homes Big Losers in Budget. Retrieved February 17, 2015, from http://www.northcarolinahealthnews.org/2014/08/01/hospitals-adult-care-homes-big-losersin- budget/
Hoban, R., Singh, J., & Namkoong, H. (2015). FINAL: The Health and Human Services Budgets Compared. Retrieved February 17, 2015, from http://www.northcarolinahealthnews.org/thehealth- and-human-services-budgets compared/
In the Public Interest. “North Carolina Mental Health System.” (2015). Retrieved April 29, 2015,
Kelly, C., & Williams, I. (2007). Providing Dementia-Specific Services to Family Caregivers: North Carolina’s Project C.A.R.E. Program. Journal of Applied Gerontology, 26(4), 399-412. Retrieved February 18, 2015, from http://www.ncdhhs.gov/aging/ad/Providing_Dementia- Specific_Services.pdf
Land of Sky Regional Council: Project C.A.R.E. (2012). Retrieved April 8, 2015, from http://www.landofsky.org/projectcare
Leslie, L., & Morgan, D. (2012, December 13). Medicaid benefit cuts impact thousands of Alzheimer’s patients. Retrieved February 17, 2015, from http://www.wral.com/medicaidbenefit- cuts-impact-thousands-of-alzheimer-s-patients/11874686/
Lin, P. J., Fillit, H. M., Cohen, J. T., & Neumann, P. J. (2013). Potentially avoidable hospitalizations among Medicare beneficiaries with Alzheimer’s disease and related disorders. Alzheimer’s & Dementia, 9(1), 30-38. http://www.sciencedirect.com/science/article/pii/S1552526012025204
Long, K. H., Moriarty, J. P., Mittelman, M. S., & Foldes, S. S. (2014). Estimating The Potential Cost Savings From The New York University Caregiver Intervention In Minnesota. Health Affairs, 33 (4), 596-604.
Mastry, Olivia. (2015, March). Speech to the North Carolina Taskforce on Alzheimer’s disease and
Miller, Debra. (2011, September). Alzheimer’s disease and Caregiving. The Council of State
Governments Knowledge Center. Retrieved April 11, 2015, from: http://knowledgecenter.csg.org/kc/content/Capitol-Research-alzheimers-disease-andcargiving
Minnesota Board on Aging (2011). Preparing Minnesota for Alzheimer’s: the Budgetary, Social and Personal Impacts. Retrieved February 17, 2015, from: http://www.alz.org/national/documents/MN_state_plan.pdf
Morgan, J. (2008). Union County Community Health Assessment 2008. Retrieved April 1, 2015, from http://www.co.union.nc.us/Portals/0/Health/Documents/CHA2008.pdf
Morgan, J. (2012). Union County 2012 Community Health Assessment. Retrieved April 1, 2015, from http://www.co.union.nc.us/Portals/0/Health/Documents/CHA2012.pdf
National Alliance for Caregiving & Alzheimer’s Foundation of America. (2014). From plan to practice: Implementing the National Alzheimer’s Plan in Your State. National Alliance for Caregiving.NC PACE Association: History and Growth. (2015). Retrieved April 9, 2015, from http://ncpace.org/pace-in-nc/history-and-growth
NC PACE Association: PACE Sites. (2015). Retrieved April 9, 2015, from http://ncpace.org/pace-innc/ pace-sites
North Carolina Community Alternatives Program for Disabled Adults Waiver (CAP/DA) (2014, March). Retrieved April 7, 2015, from http://www.payingforseniorcare.com/medicaidwaivers/ nc-community-alternatives-program for-disabled-adults.html
North Carolina Department of Health and Human Services. “Facilities with Special Care Unit Beds.” (2015, April 16). Retrieved April 29, 2015, from http://www.ncdhhs.gov/dhsr/acls/pdf/sculist.pdf
North Carolina Division of Aging and Adult Services: Home and Community Care Block Grant (2013, March 14). Retrieved April 9, 2015, from http://www.ncdhhs.gov/aging/manual/hccbg/hccbg.htm
North Carolina Medicaid Special Bulletin: Cap Limits on PACE Enrollments for State Fiscal Year 2014 (2014, May). Retrieved April 10, 2015, from http://www.ncdhhs.gov/dma/bulletin/pdfbulletin/0514_Special_Bulletin_PACE.pdf
North Carolina Mental Health System. (2015). In the Public Interest. Retrieved April 10, 2015, from http://www.inthepublicinterest.org/case/north-carolina-mental-health-system
North Carolina’s Family Caregiver Support Program. (2014, December 11). Retrieved February 1, 2015, from http://www.ncdhhs.gov/aging/fchome.htm
Oakes, A. (2013, September 3). NC continues stopgap funding for group homes. Retrieved February 17, 2015, from http://www.wataugademocrat.com/news/nc-continues-stopgap-funding-forgroup- homes/article_1b33c8c6-e796-5614-804f-2977c120412a.html
Reauthorize the Older Americans Act. (2015, March 1). Retrieved April 8, 2015, from http://www.aarp.org/politics-society/advocacy/info-2014/where-aarp-stands-older-americansact.html
Reinhard, S., Feinberg, L., Choula, R. (2012). A Call to Action: What Experts Say Needs to be Done to Meet the Challenges of Family Caregiving. AARP Public Policy Institute. Retrieved April 11, 2015, from Reitz, C., Brayne, C., & Mayeux, R. (2011). Epidemiology of Alzheimer disease. Nature Reviews Neurology, 7, 137-152.
Senate Bill 466 (2015). Retrieved April 11, 2015, from http://www.ncleg.net/gascripts/BillLookUp/BillLookUp.pl?Session=2013&BillID=s466
Shaw, L. (2013). Response to NC Department of Health and Human Services Division of Medical Assistance Request For Information RFI-DMA 100-13. Retrieved April 8, 2015, from http://ncpace.org/images/uploads/NC_PACE-DMA100-13_FINAL.pdf
Social Worker (BSW) Salaries. (2015). Retrieved April 11, 2015, from http://www.payscale.com/research/US/Job=Social_Worker_(BSW)/Salary#CareerPaths
Sosa-Ortiz, A., Acosta-Castillo, I., & Prince, M. J. (2012). Epidemiology of Dementias and Alzheimer’s disease. Archives of Medical Research, 43, 600-608. ↩