California’s Alzheimer’s Disease State Plan
Guiding Principles, Goals, 
Recommendations and Strategies
Final Report of the 
Alzheimer’s Disease State Plan Task Force 

Reflects Review of the Alzheimer’s Disease and Related Disorders Advisory Committee via Conference Call on October 21, 2010 

Guiding Principles

California’s Alzheimer’s Disease State Plan is intended to:
  
•	Promote person-centered care that is responsive to individual needs.
•	Address the wide cultural, ethnic, racial, socio-economic and demographic diversity of California’s population.
•	Be applicable to the social and medical needs of an aging population living with multiple chronic diseases and disabling conditions.
•	Set a ten-year public policy roadmap for 2011- 2021 to help people living with Alzheimer’s disease and their caregivers flourish.  

GOAL #1 – ELIMINATE STIGMA

Recommendation 1a: Heighten public awareness through culturally appropriate public education campaigns.
Strategies:
1.	Identify public, private, corporate and philanthropic funding sources for broad-based, statewide educational campaigns.
2.	Develop content for public awareness campaigns to address a wide range of issues and audiences, including, but not limited to:
•	Identify early warning signs and effective strategies for obtaining diagnosis, treatment and support.  
•	Educate on the cost of long-term care, limits of Medicare/Medi-Cal coverage, personal responsibility, the importance of financial planning and the availability of the Community Living Assistance Services and Support Act (CLASS ACT), part of a national public education campaign to ADVANCE CLASS.  
•	Collaborate with other organizational efforts to inform Californians of end-of-life care options and encourage appropriate use of advance health care directives and Physician Orders for Life Sustaining Treatment (POLST).  
3.  Promote positive images of Alzheimer’s disease to combat stigma and improve societal acceptance and integration.  
4.  Pursue elementary and secondary level curriculum in schools to educate young Californians on the facts of aging with an emphasis on sensitivity to functional, physical and cognitive limitations.  

Recommendation1b: Ensure established clearinghouses have reliable information. 
Strategies:  
1.	Support public education campaign messages with an array of accessible websites that contain standardized Alzheimer’s content.
2.	Develop links within existing state-supported websites to ensure evidence-based and reliable Alzheimer’s related educational information is available via The California Health and Human Services Agency and its departments:  Aging, Health Care Services, Mental Health, Office of Statewide Health Planning and Development, Public Health and Social Services, as well as the Department of Motor Vehicles. Encourage date stamping to promote current and relevant information.
3.	Link to private websites and contact centers available on-demand, 24/7 such as the Alzheimer’s Association at 1-800-272-3900 and www.alz.org, for access after-hours and from remote locations.
4.	Fully develop CalCare Net to cover all 58 California counties to augment and strengthen existing statewide consumer resources such as:  2-1-1 information line, Aging and Disability Resource Centers, Area Agencies on Aging, Caregiver Resource Centers and the California Alzheimer’s Disease Centers as community resources affiliated with statewide entities.   Disseminate these phone numbers, physical addresses and websites to the public.  
5.	Provide state-approved forms such as Durable Power of Attorney for Healthcare, POLST, and other documents with helpful instructions and Frequently Asked Questions at no cost to the consumer via public libraries, resource centers and easily accessible websites.  

Recommendation1c: Promote consumer access to established clearinghouses.
Strategies:
1.  Consider adopting a template for information and educational materials to ensure they are available at appropriate literacy, language and legibility (font size) for a diverse population. 
GOAL #2 – ENSURE ACCESS TO HIGH QUALITY, COORDINATED CARE IN THE SETTING OF CHOICE
Recommendation 2a:  Develop a comprehensive, accessible network of medical care and long-term services and support from diagnosis through end-of-life.
Strategies: 
1.  Embrace the concept and characteristics of the “Medical Home” and “health care home” which provide coordinated, interdisciplinary, person-centered Alzheimer’s care as demonstrated by evidence-based characteristics such as comprehensive assessments, clear goals of care and regular re-evaluation to adapt to changing individual needs as the disease progresses.  
2.  Invest in care management and care coordination to ease care transitions. 
3.  Maximize the availability of medical and support services by promoting use of telemedicine    and other technology that brings Alzheimer’s expertise to sites that lack specialized skills or advanced training.

Recommendation 2b: Advocate for accessible transportation systems.
Strategies:
1.	Place and train a mobility manager in each Area Agency on Aging to promote development and ensure awareness of the transportation needs of people living with Alzheimer’s disease.
2.	Ensure input to the state interagency group and the Project Advisory Committee working to improve human services transportation coordination and implement the Mobility Action Plan that reflects the needs of people with Alzheimer’s.
3.	Mandate that the DMV refer to transportation resources upon involuntary surrender, expiration or loss of driving privileges (e.g. license revocation) to address the unique transportation needs of persons in the early stages of Alzheimer’s disease and their caregivers.
4.	Offer voluntary dementia training and certification of bus drivers, cab drivers and others who work in public transportation.  Include large print signs and clear audio messages as criteria of certification.
Recommendation 2c: Address the affordability of services across the long-term care continuum. 
Strategies:
1.	Preserve, protect and increase established Home and Community-Based programs that effectively serve people with dementia and support their caregivers, including Alzheimer’s Day Care Resource Centers, Adult Day Health Care, In Home Supportive Services and the Program for All-inclusive Care for the Elderly.  
2.	Preserve, protect and improve licensed facilities that serve people with Alzheimer’s disease and related dementias, such as Residential Care Facilities for the Elderly and Nursing Facilities.
3.	Promote best practices (such as Dementia Care Networks) to meet existing needs and foster replication and innovation to meet emerging needs.
4.	Enhance legal protections for people living with the disease, caregivers and care providers to protect against abuse and neglect.
GOAL #3– ESTABLISH A COMPREHENSIVE APPROACH TO SUPPORT FAMILY CAREGIVERS

Recommendation 3a: Acknowledge and invest in the informal, unpaid caregiver as a vital participant in care.
Strategies:
3.	Support, fund and expand the availability of professional guidance to help family caregivers navigate and manage myriad safety and behavioral issues through an array of services such as caregiver assessment, care consultation, counseling, care management, respite care, support groups, assistive technologies and other effective interventions.  
4.	Empower family caregivers to register for, participate in and complete training in established educational programs offered by reliable public and not-for-profit organizations with specialized expertise in Alzheimer’s disease.
5.	Encourage businesses and other workplace sites to offer family caregiver support services, e.g. flexible work hours, referrals and counseling through Employee Assistance Programs and other employee initiatives.  
6.	Secure foundation, corporate and nonprofit funding for effective statewide family caregiver training programs such as in Partnering with Your Doctor and the Savvy Caregiver series offered by the Alzheimer’s Association.
Recommendation 3b: Sustain and expand California’s statewide caregiver support network.
Strategies:
1.	Expand upon care coordination infrastructures that assist families in understanding the diagnosis, how to access services, future challenges and other issues.   
2.	Invest in the future of the Caregiver Resource Centers, Alzheimer’s Day Care Resource Centers, California’s Alzheimer’s Disease Centers, and other programs tailored to the unique needs of family caregivers.  
3.	Increase the availability of and referral to face-to-face and web-based support groups for family caregivers and persons in the early stage of the disease.  Encourage referral by physicians, health professionals and community-based organizations. 
4.	Educate and enlist the faith community as trusted resources that can help reach out to and support family caregivers.
5.	Promote the critical importance of establishing meaningful activities across the care continuum that are specifically adapted for the person with Alzheimer’s disease.  This may include vocational, rehabilitative, social and recreational.  

GOAL # 4 – DEVELOP AN ALZHEIMER’S PROFICIENT, CULTURALLY COMPETENT WORKFORCE

Recommendation 4a: Build and expand workforce capacity and competency throughout the continuum of care.
Strategies:
1.	Support certification, licensure and degree programs that encourage working with older adults and persons with Alzheimer’s disease and their caregivers.  Upon completion, work with licensing boards to mandate continuing education on Alzheimer’s and related dementias as a condition of license renewal for doctors, nurses and other health professionals.  
2.	Establish public-private educational training partnerships that support health care workers with career ladders while offering employers a professional pipeline to aid in job recruitment and employee retention efforts.  
3.	Protect and promote the 10 California Alzheimer’s Disease Centers as a training resource for community providers and licensed health professionals.  
4.	Mandate competency-based training for employees in specific settings, (e.g., hospitals, nursing homes, In-Home Supportive Services, home care workers, first responders) recognizing there are different strategies for different settings, levels of skill and licensure.
5.	Integrate training on Alzheimer’s and related dementias into standard curriculum for trainees, medical students and residents 
6.	Create financial incentives (through tuition assistance, loan forgiveness, housing subsidies and stipends) to increase the number of health care professionals who pursue education and training to specialize in gerontology and geriatrics, particularly those who make a commitment to work in underserved communities.
7.	Promote the use of Medicare coding to reimburse physicians and allied health professionals for family conferences and care planning meetings that educate and support family caregivers, promote future planning, and enhance the quality of medical care and support services.
Recommendation 4b: Improve dementia care capacity and competency of primary care providers.  
Strategies:
1.	Explore, endorse and disseminate dementia-specific curriculum and training programs tailored to primary care physicians, internists, general practitioners, physician assistants and nurse practitioners.  
2.	Regularly update and disseminate California’s evidence-based Guidelines for Alzheimer’s Disease Management to continually improve assessment, treatment, care coordination and follow-up support of the patient.
3.	Require a basic level of dementia sensitivity and educational training for all trainees in health related fields at the student and residency levels.
4.	
Strengthen primary care practices by dedicating staff support (or by providing access to a Dementia Care Manager) to coordinate care, manage individual cases, and develop formal mechanisms for referral to health care homes and community-based agencies that offer specialized expertise, social supports and mental health services.  
5.	Engage community physicians in research to encourage referral to and participation in clinical trials.  
6.	Protect and promote the California Alzheimer’s Disease Centers as a tertiary referral resource for community physicians diagnosing and managing complex cases.
7.	Educate clinicians on the criteria needed to refer and qualify a patient for hospice care to ensure that patients receive full benefit of the medical, health services and social supports offered at the end-of-life.
8.	Incorporate Alzheimer’s educational materials for patients and family caregivers into digital libraries to enable physicians to store and forward information on electronic medical records.  

GOAL # 5 – ADVANCE RESEARCH

Recommendation 5a: Sustain and expand existing research efforts.
Strategies:
1.	Preserve, restore and expand state funding of California’s 10 Alzheimer’s Disease Centers, including the mandate to conduct research.
2.	Promote increased taxpayer contributions to the tax check-off for Alzheimer’s disease research.
3.	Renew California’s commitment to lead the nation in research, attracting world-class talent, federal research dollars and economic multipliers that create jobs and drive innovation by:
o	Collaborating with industry and the life and biosciences sector.
o	Explore opportunities for California’s special funds for research to support competitive funding for Alzheimer’s disease, e.g. funds awarded by the California Institute for Regenerative Medicine.
o	Promoting research focused on the development of assistive technology including both high and low tech assistive devices that make everyday environments more adaptable to people with Alzheimer’s.

Recommendation 5b: Increase participation in research.
Strategies:
1.	Educate the public on the availability, purpose and value of research and encourage participation in clinical trials and other studies.  Promote the Alzheimer’s Association’s TrialMatch as a resource for  increasing participation in Alzheimer’s clinical trials.
2.	Collaborate with private, state and federal partners to increase participation of diverse populations in research studies.
3.	Partner with the Coalition for Compassionate Care of California to include and promote sample language regarding research participation in standard advance health care directive forms.  

GOAL # 6 – CREATE A COORDINATED STATE INFRASTRUCTURE THAT ENHANCES THE DELIVERY OF CARE

Recommendation 6a: Implement a statewide strategy to coordinate, integrate, deliver and monitor the continuum of care and services.
Strategies:
1.	Establish mechanisms that will result in better coordination between state and local agencies, government departments and voluntary health organizations to enable California to better serve its aging and disabled population.  For example, licensure and certification.  
2.	Create an integrated state long-term care financing budget that provides incentives for people to receive care in home and community-based settings and enables California to retain and reinvest cost savings back into the state’s long-term care infrastructure.    
3.	Recognize and address the financial burden of caregiving and work to protect spouses from impoverishment at all levels of care.  
4.	Provide regular training to regulators on best practices in dementia care to improve consistency and continuity between settings.
5.	Increase funding for medical care and long-term services and support through alternative financing mechanisms such as expansion of the use of Medicaid waivers or “provider fees.”

Recommendation 6b:  Incorporate public health approaches to prepare for significant growth in Alzheimer’s disease.  
Strategies:
1.	Recognize caregiving as a health risk factor that warrants public health attention to change the practice and behavior of health professionals.  
2.	Coordinate with organizations that are actively working to reduce risk factors such as diabetes and heart disease to promote disease prevention and brain health.
3.	Promote brain health initiatives to reduce risk factors, especially in ethnically diverse communities. 
4.	Collaborate with nonprofit hospitals to assist in meeting their legislative mandate to conduct a community needs assessment and disperse community benefit funds to local agencies working to improve health status of people living with Alzheimer’s disease and their caregivers.  (Senate Bill 697 (Torres), Chapter 812, Statutes of 1994).  

Recommendation 6c: Collect and use data to drive service development and delivery. 
Strategies: (Note: discussion on this section was not completed—see notes below)
1.	Increase surveillance through Behavioral Risk Factor Surveillance System (BRFSS), California Health Interview Survey (CHIS), the Healthcare Effectiveness Data and Information Set (HEDIS) and other surveys. 
2.	Develop a uniform data collection tool across publicly funded programs (Note: other details needed?)
3.	Reinstate data collection activities that have been eliminated as a result of budget cuts, e.g. California’s Alzheimer’s Disease Centers and the Caregiver Resource Centers.  (Note: discussed but no decision on whether to include)
4.	Use available data to assist in refinement and implementation of California’s Alzheimer’s Disease State Plan (and for other specified purposes?)
5.	Apply predictive modeling to data collected.