Maine State Library Maine State Documents Aging And Disability Services Documents Health & Human Services 2012 State Plan for Alzheimer's Disease and Related Dementias in Maine 2012 Maine Aging and Disability Services Maine Department of Health and Human Services Follow this and additional works at:http://statedocs.maine.gov/oads_docs Recommended Citation Maine Aging and Disability Services and Maine Department of Health and Human Services, "State Plan for Alzheimer's Disease and Related Dementias in Maine 2012" (2012).Aging And Disability Services Documents.Paper 3. http://statedocs.maine.gov/oads_docs/3 This Document is brought to you for free and open access by the Health & Human Services at Maine State Documents. It has been accepted for inclusion in Aging And Disability Services Documents by an authorized administrator of Maine State Documents. For more information, please [email protected]. State Plan for Alzheimer’s Disease and Related Dementias in Maine Aging and Disability Services An Office of the Department of Health and Human Services Paul R. LePage, Governor Mary C. Mayhew, Commissioner ACKNOWLEDGEMENTS The Maine Department of Health and Human Services and the Alzheimer’s Association Maine Chapter would like to thank the more than 75 individuals who helped inform the development of this plan. Stakeholders included family caregivers, individuals living with the disease, representatives from the Maine Center for Disease Control and Prevention, medical providers, health and social service organizations, professional caregivers, and representatives of the Maine Association of Area Agencies on Aging, home care, long-term care facilities, assisted living, the Long-term Care Ombudsman, public health, hospitals, health care focused nonprofits, elder law and finance organizations, higher education and businesses. State Workgroup Membership *DHHS-appointed Task Force Members Bob Armstrong, Principal, Bob Armstrong Consulting, Alzheimer’s Association, Maine Chapter Board Member* Joline Beam, Caregiver* John J. Campbell, M.D., FANPA, Medical Director, Maine Medical Center* Laurel Coleman, M.D., FACP, National Alzheimer’s Project Act Advisory Council Member* Jill Conover, Alzheimer’s Association, Maine Chapter, Staff* Senator Margaret Craven, Maine Senate District #16, Sponsor of LD 859* Phillip L. Crowell, Jr., Police Chief, City of Auburn Leo Delicata, Public Policy Advocate, Legal Services for the Elderly* Edwina Ducker, Rural Health Manager, Office of Rural Health & Primary Care Rick Erb, President & CEO, Maine Health Care Association* Sharon Foerster, Program Manager, Elder Care Services, MaineHealth Julie Fralich, Program Director, Disability & Aging, Muskie School of Public Policy* Elsie Freeman, MD, MPH, Medical Director, DHHS Office of Quality Improvement Brenda Gallant, Long Term Care Ombudsman* Peter Gore, Vice President of Government Relations, Maine State Chamber of Commerce Ricker Hamilton, Director, Office of Aging & Disability Services, Maine DHHS Joyce Hemeon, Administrator, MaineGeneral’s Alzheimer’s Care Center Bill Jenks, President/Owner, Home Instead Senior Care, Alzheimer’s Association, Maine Chapter Board Member Becca Matusovich, Cumberland District Public Health Liaison, Maine CDC Jessica Maurer, Executive Director, Maine Association of Area Agencies on Aging* Lori Parham, State Director, AARP Maine Kathryn Pears, MPPM, Founder & CEO, Dementia Care Strategies Katy Phillips, LCSW, Program Mgr. for Elder Services, Community Counseling Center Vicki Purgavie, Executive Director, Home Care & Hospice Alliance of Maine* Julie Redding, MD* Valerie Ricker, MSN, MS, Division of Population Health, Maine CDC Nicole Rooney, Management Analyst II, Office of Aging & Disability Services, Maine DHHS 2 ACKNOWLEDGEMENTS Brett Seekins, Senior Manager, Baker, Newman & Noyes¬* Lisa Sockabasin, Director, Office of Minority Health, Maine CDC Judith Southworth, Elder Services, Catholic Charities Refugee & Immigration Services Megan Stiles, Director of Quality Improvement & Regulatory Affairs, Maine Health Care Association* Karen Stram, Caregiver* Sally Tartre, Caregiver Laurie Trenholm, Alzheimer’s Association, Maine Chapter, Executive Director* Romaine Turyn, Director Policy, Planning & Resource Development, Office of Aging & Disability Services, Maine DHHS Denise Vachon, Executive Director, Park Danforth, Portland David Winslow, Maine Hospital Association Sean Yardley, City of Bangor Health and Community Services We would also like to thank the following stakeholders for their valuable input: Nona Boyink, Senior Vice President, MaineGeneral Health Donna Beveridge Alain Bois, Northern Maine Medical Center Rosie Goedtel, Director of Member Services & Communications, LeadingAge, Maine/NH James Harnar, Executive Director, Daniel Hanley Center for Health Leadership Nancy Herk-Bott, Executive Director, Respite Care of Brunswick Andrew MacLean Esq., Deputy Vice President and General Counsel, Maine Medical Association Gordon Smith Esq., Executive Vice President, Maine Medical Association Jessa Barnard J.D., Director of Public Health Policy, Maine Medical Association Kip Neale, Coordinator, Maine Behavioral Risk Factor Surveillance Systems Elisabeth Paine, Caregiver Stacy Paradis, St. Mary’s Health System Julie Sullivan, Director, Portland Public Health Photos were provided by the Alzheimer’s Association. Thank you to the Alzheimer’s Association, Maine Chapter for production and distribution of the plan. And a special thank you to Whitney Campbell & Co. Advertising and A Few Good Words for design and editing services. This is Maine’s first-ever State Plan for Alzheimer’s Disease and Related Dementias. Recommendations vary in scope, cost and im- pact and include actions in the near term as well as mid- and long-range goals. Each will require numerous actions to achieve and will require engagement of a diverse group of public and private sector stakeholders. As this plan was developed during a period in which our country’s first National Alzheimer’s Plan was also being crafted, it will be important, as the state plan moves to implemen- tation phase, that federal implementation be monitored to ensure activities strategically align to maximize outcomes and funding for priority Maine initiatives. 3 State Plan for Alzheimer’s Disease and Related Dementias in Maine Acknowlegments................................................................................................................................................. 2 Executive Summary ............................................................................................................................................. 5 I. Introduction, State Plan Structure and Process ............................................................................................8 A. Formation of three workgroups B. Utilization of community forums II. Disease Background Information ................................................................................................................11 A. What is Alzheimer’s? B. State demographics III. Public Awareness, Public Health and Safety ...............................................................................................15 A. Public awareness and public health B. Risk reduction Recommendations IV. Diagnosis and Treatment ...........................................................................................................................21 Special insert by John J. Campbell, MD, FANPA, Medical Director, General Hospital Psychiatric Services, Maine Medical Center V. Home- and Community-Based Services .....................................................................................................38 A. Quality service delivery in dementia-capable communities B. Cost to families Recommendations VI. Facility-Based Long-Term Care Services ....................................................................................................46 A. Quality of care B. Cost to families Recommendations VII. Financing Long-Term Care ..........................................................................................................................50 A. Funding efficiency, cost containment B. Long-term care insurance, other private funding C. Medicare and Medicaid, other public funding Recommendations VIII. Education and Training ................................................................................................................................58 A. Geriatric education B. Family caregiver education C. Direct care worker dementia-specific training Recommendations Appendix A: Resource Directory ........................................................................................................................62 4 EXECUTIVE SUMMARY Now is the time to make Alzheimer’s disease a priority in Maine and across the country. As of 2012, more than 5 million Americans have the disease; by 2050, that number grows to 16 million. In Maine alone, the number of individuals living with Alzheimer’s will increase from 37,000 individuals today to over 53,000 individuals by 2020. One in eight people aged 65 and older has Alzheimer’s disease, and Maine’s 65-74 year old age group is forecast to grow by 77% in the next ten years. The annual cost of Alzheimer’s today is $183 billion; by mid-century, the disease could cost our country over a trillion dollars per year. Most importantly, behind every statistic, there is a person. Millions of people are enduring the devastation of this disease that steals memories, independence, control, time, and ultimately, life. Family members and friends struggle to provide or ensure exhaustive, round-the-clock care as their loved ones succumb to the disease. The Maine State Plan on Alzheimer’s Disease and Related Dementias will help guide our response to meeting the needs of individuals and their families affected by mild cognitive impairment and Alzheimer’s disease or related dementia today, tomorrow and into the next decade. The plan is a result of a state taskforce that was convened by the Maine Depart- ment of Health and Human Services pursuant to LD 859, legislation sponsored by State Sen. Margaret Craven of Lew- iston, which was signed into law by Gov. Paul LePage in June 2011. Maine’s Office of Elder Services partnered with the Alzheimer’s Association, Maine Chapter to recruit additional stakeholders to serve on workgroups to develop the plan over an 11-month period. Individuals from across the state were involved, including family and professional caregivers; individuals living with the disease; representatives of the Maine Center for Disease Control & Prevention and the Maine Association of Area Agencies on Aging; medical providers; health and social service representatives; representatives from home care organizations, assisted living and long-term care facilities; the Long-term Care Ombudsman, public health of- ficials, hospital administrators, directors from health care focused nonprofits, elder law, and finance organizations; as well as representatives from higher education and businesses. Public input sessions provided additional feedback to inform the plan. The plan engages state agencies, local businesses, the private sector, and philanthropic groups to make Alzheimer’s dis- ease a top priority in Maine. A comprehensive state strategy to address the needs of individuals with Alzheimer’s disease will provide a mechanism to consider all of these issues collectively. This public health crisis will then be addressed with a thoughtful, integrated and cost-effective approach that is easier for individuals and families to navigate. Twenty-three states across the country already have Alzheimer’s Disease plans in place. The Maine plan was crafted at the same time a first-ever National Alzheimer’s Plan was being drafted under the direction of the U.S. Department of Health & Human Services. We now have a significant opportunity to change the course of Alzheimer’s disease through the strategic and coordinated implementation of these plans. The national plan is comprehensive and seeks to achieve critical elements that individual states alone could not, such as federal research to better understand and treat the disease, and ultimately, to find a cure. There are many initiatives that states like Maine will need to move forward on, leveraging resources on all levels to help our friends and neighbors struggling with the disease. Based on all the input and experiences shared over the last 11 months, here is what we agreed we must do here in Maine: Increase awareness about Alzheimer’s disease and its impact. Despite the number of people affected, many Main- ers still know very little about this disease, which often remains in the shadows, discussed in whispers if at all. We must bring Alzheimer’s fully into the open, explain the warning signs, address misplaced anxieties, correct misconceptions and overcome the stigma that too often makes a terrible disease even more of a hardship. 5 Provide more timely diagnosis, treatment and higher quality care. We must improve the quality of care provided to those with Alzheimer’s. Currently, care is often fractured and ineffective, falling short of what is needed. Detection and di- agnosis - the foundation of good care - often happens far too late, if at all. As a result, many facing the disease today are left without adequate opportunity to plan ahead. In addition, patients experience poor care coordination and face further complications from coexisting conditions. Offer better support to caregivers. We must change the fact that we are very poorly equipped to support those with Alzheimer’s and their caregivers in our homes and communities. Caregivers are too often isolated and uninformed about effective support strategies. Little government support is provided to help those who want and choose to keep their loved ones at home longer, even if this option is less expensive overall. Enhance long-term care access and quality. Maine’s service infrastructure has significant capacity gaps, which exac- erbate challenges for those living in an older, rural state affected by a high rate of chronic disease. To meet the needs of today and tomorrow, we need to appropriately fund a sustainable infrastructure that supports what is done well, empow- ers choices to do things we know we can do better, and enhances capabilities with innovative new cost-effective models of care delivery that have proven successful in providing quality, evidence-based care where it is needed. The present reality is that even long-term care facilities are often not fully equipped to meet the intense demands of caring for those in the middle and later stages of the disease. We need to do a better job at recruiting, educating, and training our work- force across all settings that make up the care continuum. We learned many things from Maine people who came together to develop and inform this plan. The most important is that those living with and affected by Alzheimer’s disease are desperate for decisive and meaningful action. We need a transformational plan, and we need it now. It’s time to roll up our sleeves, to reach beyond the statistics and make sure Mainers suffering from the effects of Alzheimer’s Disease know they are not alone and to let them know there are resources in place that will ease their burden. 6 2011-2012 PROCESS, TIMELINE AND MILESTONES Milestone Date/Period Phase I LD 859, sponsored by Sen. Margaret Craven, signed into public law June 2011 Phase II Joint LD65/LD 859 Task Force meetings convened by Maine DHHS (4) October 14 – November 18, 2011 Workgroups work sessions convened by Alzheimer’s Association Nov. 1, 2011 – April 11, 2012 Maine Chapter - Met once in November 2011 - Met twice a month in Jan., Feb. and March - Met once in April to finalize workgroups’ draft - Location: Augusta, with call-in available - All workgroups met same day, consecutively - Alzheimer’s Association Maine Chapter staffed (Research, materials, agenda, minutes, drafting/revising of documents, facilitation) Meeting dates/times: Back-to-back, one-hour work sessions of the three workgroups were held Wednesdays on Nov. 30, Jan. 11, Jan. 25, Feb. 8, Feb. 22, March 14, March 28, April 11 from 10 a.m. to 2:00 p.m. with a one-hour break for lunch from 12 noon to 1 p.m. prior to the third group’s session. Locations: Nov. 30 meeting was held at 32 Blossom Lane, Marquardt Rm 1A. The meetings scheduled to take place during legislative session listed above January-April were held in Cross Office Building, Room 600, Augusta. Last day of work sessions April 11, 2012 Draft completed April 19, 2012 Public input sessions to be held Late April / Early May 2012 Draft Resource Directory Appendix to be completed Mid-May, 2012 Revised draft of complete State Plan to be delivered to Mid-May, 2012 Task Force Members for final review Final State Plan Report to be delivered to DHHS Early June, 2012 DHHS presentation to HHS Committee of State Legislature TBA Phase III and IV Starting early fall 2012 Work together to promote plan, translate into policy and implementation prior to swearing in of the phases as appropriate to strategically coordinate multi-year, multi-policy to 126th Maine Legislature issue campaigns successfully implement the recommendations and ongoing Revisit and re-evaluate plan, establish priorities Annually in early fall in advance of based on impact, cost, feasibility cloture deadlines for upcoming legislative sessions 7 I. STATE PLAN STRUCTURE AND PROCESS By the middle of this century as many as 16 million Americans will have Alzheimer’s disease. As of 2012, more than 5 million Americans have the disease. In Maine, the number of individuals with Alzheimer’s disease will dramatically in- crease from the 37,000 individuals today to over 53,000 by 2020, yet there has been no plan in place to accommodate growing needs. Between now and 2020, Maine’s long-term care system will need to accommodate the varied needs of an additional 103,000 persons age 65-or-older. While all Maine age groups over age 55 are projected to grow between 2008 and 2020, Maine’s 65-to-74 year-old age group is forecast to grow by 77% over 12 years, the fastest of any age group. This represents a total increase of 80,000 (77%) over 12 years. The number of Mainers age 85-and-above, the age group with the highest demand for long-term care, will grow by 3,000 persons, an 11% increase between 2008 and 2020. (Source: Woods and Poole Economics, Inc., “2008 New England State Profile: State and County Projections to 2040,” and U.S. Census Bureau, Population Division, “Interim State Population Projections,” 2008).   The State Plan for Alzheimer’s Disease and Related Dementias in Maine presents a roadmap for the creation of an infra- structure necessary to build dementia-capable programs for the growing number of people with the disease. A comprehensive state strategy to address the needs of individuals with Alzheimer’s disease provides a mechanism to consider all of these issues collectively. The Alzheimer epidemic can then be addressed with a thoughtful, integrated and cost-effective approach. Enactment of LD 859 was Phase I of a four-phase process: I. The mandate, II. The plan, III. The policy, and IV. The implementation (immediate, mid-term and long-term) over the next two decades. 8 Phase II involves the development of the plan with recommendations as mandated by LD 859. This phase included/will include: • The Commissioner of the Maine Department of Health & Human Services appointed task force members. Office of Elder Services convened initial meetings in October and November 2011. • Participation was expanded and diversified through formation of workgroups (See also “A” below), which were convened by the Alzheimer’s Association Maine Chapter from November 2011 through April 2012. All pertinent issues within the scope of LD 859 were discussed—from primary prevention to end-of-life-care. • A consensus-built plan report was drafted through the efforts of the workgroups. • Three community forums were held to receive public input (See also “B” below). Next: • Final revisions will be made and a final review by the LD 859 task force will be completed. • The report, which will be put in final publication design format and provided to the Office of Elder Services and the Maine Department of Health & Human Services for presentation to the Joint Standing Committee on Health and Human Services, will include meaningful, strategic recommendations for improving Maine’s capacity to address Alzheimer’s and related dementias. A. Formation of workgroups and draft plan development Three workgroups, covering the broad topics of Public Awareness, Public Health & Safety; Home and Community-Based Care; and Facility-Based Long-Term Care Services, were formed to develop the plan, including recommendations that correspond with the plan elements articulated on the plan outline, items III through VIII. B. Community forums Conducting community forums to hear comments allowed caregivers, family members, health and social service provid- ers, and other community members, to share stories and experiences about caring for and providing services to individu- als with Alzheimer’s disease and other dementias and further inform the plan. Individuals with Alzheimer’s disease and other dementias were also encouraged to share their experiences at the forum. Following is a list of proposed questions that acted as a guide for those who wished to speak: All Participants • What supportive and healthcare services are needed in your community? • What is working well in your community that could be shared across the state? • What creative approaches would you recommend to better serve people in your community? Caregivers • What are the most critical needs you face as a caregiver? How could those needs be better met? • What assistance and support are most important to you, your family and other caregivers? 9