NATIONAL PLAN TO ADDRESS ALZHEIMER'S DISEASE: 2017 UPDATE. Strategy 3.A: Ensure Receipt of Culturally Sensitive Education, Training, and Support Materials

09/01/2017

National Brain Health Center for African Americans. CDC supported the development of the National Brain Health Center for African Americans (NBHCAA). The mission of NBHCAA is to raise awareness of the issues of cognitive health among African Americans by working through networks of faith-based institutions and by establishing partnerships with organizations and individuals dedicated to our mission. The three areas of focus of brain health education, mobilization and advocacy, and networking. NBHCAA serves as an information hub on the human brain that must be shared throughout all networks that reach and touch approximately 40 million African Americans living in the United States.

For more information, see:

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Training African American Nurses about Brain Health. With CDC support, the Balm in Gilead in partnership with the National Black Nurses Association trained African American nurses from 14 chapters of the National Black Nurses Association across the United States in 2016. Additional training are ongoing in 2017.

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Alzheimer's and Dementia Training for Aging Professionals. ACL hosted Alzheimer's and dementia training workshops, including a half-day session, at a national conference of aging professionals. The sessions provided information on initiatives designed to improve community-based care for individuals living with dementia and their caregivers.

For more information, see:

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National Alzheimer's Call Center. Through the National Alzheimer's Call Center, ACL funds the operation of a national information and counseling service for persons with AD/ADRD, their family members and informal caregivers. The National Alzheimer's Call Center is available to people in all United States and territories, 24 hours a day, 7 days a week, 365 days a year to provide expert advice, care consultation and information and referrals nationwide, at the national and local levels, regarding AD/ADRD. The Alzheimer's Association, which received the ACL grant, is currently in the fourth year of a 5-year funding period which will end July 31, 2018.

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Indian Country Aging Programs. Indian Country programs involve educational efforts and implementation of a proven caregiver support program. Education involves: consumer fact sheets on dementia in Indian Country, conference presentations, training programs, and webinars.

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Training Resources for IHS Staff. IHS completed a review of training resources for IHS nursing staff. Articles in the IHS Primary Care Provider highlighted person-centered goals and strategies for improving care for persons with dementia. IHS collaborated with HRSA to engage the HRSA-funded GWEPs in strategies to improve recognition and diagnosis of dementia.

Currently eight GWEPs partner with federally recognized Tribal populations and one collaborates with a non-federally recognized Tribal population. The nine GWEPs have developed a Native Populations Interest Group in preparation for exchanging training materials. The University of Wyoming is currently developing culturally-relevant dementia training material for Native American people on the Wind River Reservation by creating a pictorial version of the Alzheimer's Association's Know the 10 Signs: Early Detection Matters.

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Outreach and Training in Indian Country. IHS provided training at the National Meeting of the Title VI Directors (the ACL-funded Aging Network) on AD/ADRD and outreach and education at the National Indian Council on Aging Biennial Meeting. IHS, CMS, and ACL provide technical assistance in the development of LTSS through the jointly sponsored LTSS Technical Assistance website and shared Tribal models of LTSS in the monthly webinar series and co-sponsored a Tribal LTSS conference in Minneapolis, Minnesota, in November 2016, with a focus on AD/ADRD.

For more information, see:

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Language to Assist with the Indian Health Care Improvement Act. IHS developed sample language to assist tribes to make use of new authorities under the Indian Health Care Improvement Act to provide LTSS and supports tribes to include specific language regarding delivery of LTSS in funding agreements.

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Oregon Caregiver Training. Initial funding approved by the Oregon Legislature in 2013 was renewed in 2015 to support free statewide funding for paid and family caregivers, and for public safety workers. More than 1,400 caregivers have participated in training to date. Oregon Care Partners is a collaboration among a number of Oregon organizations that came together to support this statewide training effort. Training is offered both in-person and online, with topics addressing AD/ADRD, challenging behaviors, and geriatric medication management and safety.

For more information, see:

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Cultural Infusion in Dementia Training. The State of Minnesota is creating a dementia-capability online training that is infused with culturally specific information to reflect the norms and values of diverse cultural groups. This material is developed by cultural experts who provide a series of in-person and video conference training sessions to statewide aging service providers, medical clinics and others. The presentations focus on the issues that affect the person with dementia and caregiver, as well as tips on how the aging network providers address dementia in a specific ethnic/cultural community.

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New York State Alzheimer's Disease Community Assistance Program. The Alzheimer's Disease Community Assistance Program (AlzCAP), expanded in 2015 to a $5 million project, promotes effective patient management, education and support for people with AD/ADRD, family caregivers, health care personnel, volunteers, community agencies, and first responders. New York State funds the Coalition of Alzheimer's Association Chapters, which oversees subcontracts with six New York State Alzheimer's Association Chapters across the state and CaringKind in New York City. AlzCAP provides care planning and consultation; caregiver training; support groups; 24-hour helpline; community awareness; and increased training for important constituencies.

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Dementia Friendly America Supports for People with Dementia and Their Families. DFA provides communities with tools and resources that provide guidance on how each sector of the community can adopt sector-specific practices to become dementia-friendly. This includes advance planning, optimal clinical practices, dementia-friendly business practices, inclusion practices for faith communities, dementia-friendly disaster planning, first response, housing, public spaces and transportation and dementia-friendly customer relations. Communities identify and implement change goals that can result in increased supports for people with dementia and their families. This has led to respite care, new meaningful engagement opportunities and enhanced clinical and community supports. These changes can foster dignity, safety and rights of people with AD/ADRD. The cumulative desired results of this work include a safer and more welcoming environment that supports family caregivers.

For more information, see:

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Geriatric Competent Care. CMS's Medicare Medicaid Coordination Office held several webinars for its Geriatric-Competent Care series. The Integrated Care Resource Center helps health professionals in all settings and disciplines expand their knowledge and skills in the unique aspects of caring for older adults with AD, and in working with their caregivers. Webinars addressed several elements of dementia.

For more information, see:

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Comprehensive Primary Care Plus Model Payment for Dementia. Comprehensive Primary Care Plus (CPC+) is a national advanced primary care medical home model through CMS's Innovation Center that aims to strengthen primary care through regionally-based multi-payer payment reform and care delivery transformation. In 2017, CPC+ supports 2,891 primary care practices of 13,090 clinicians serving more than 1.76 million Medicare beneficiaries in 14 diverse regions. CPC+ has three payment elements: a care management fee, a performance-based incentive payment, and payment under the Medicare Physician Fee Schedule. Participating providers will receive a monthly additional fee for care management of enrolled Medicare beneficiaries with complex needs, including dementia.

For more information, see:

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Connected Care. CMS is working to raise awareness of the benefits of CCM services for Medicare beneficiaries with multiple chronic conditions. Connected Care is a nationwide effort in FFS Medicare that includes a focus on racial and ethnic minorities and rural populations, which have higher rates of chronic disease. Resources include a toolkit for providers, a partner toolkit with resources/activities, and beneficiary education, including a poster/postcard.

For more information, see:

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Latinos and Alzheimer's Disease: New Numbers Behind the Crisis. In September 2016, LatinosAgainstAlzheimer's network released a report in partnership with the University of Southern California Edward R. Roybal Institute on Aging entitled Latinos and Alzheimer's Disease: New Numbers Behind the Crisis. The report noted that without a medical breakthrough that prevents, cures or slows the disease progression, United States Latinos living with AD are projected to increase from 379,000 in 2012 to 1.1 million by 2030 and 3.5 million by 2060 -- an 832% increase. In addition, the report found that the cumulative direct and indirect costs of AD on the United States Latino community, including millions of family caregiver, would ultimately cost the United States economy $373 billion by 2030 and $2.35 trillion (in 2012 dollars) by 2060. The report's findings highlight the urgency of addressing the disparate impact of Alzheimer's on United States Latinos, who are 50% more likely than non-Hispanic Whites to develop the disease.

For more information, see:

  • http://www.usagainstalzheimers.org/sites/.../Latinos-and-AD_USC_UsA2-Impact-Report.pdf

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"Forget Me Not" Play. In partnership with Axovant, AfricanAmericansAgainstAlzheimer's network organized educational events in six cities in 2016, through performances of the play Forget Me Not. The play raises awareness for AD by focusing on one African American family's struggle with the disease, through comedy and relatability. The play covers the ramifications of the disease's impact and effect on the members of the family, as they try to cope with their father's diagnosis. The events reached almost exclusively African American audiences with information about AD and opportunities to connect with local clinical trial resources, including potential trial enrollment.

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Engaging Faith Leaders in Caregiver Support. In 2016, ClergyAgainstAlzheimer's network published a Leader's Guide for Seasons of Caring. The Leader's Guideprovides guidance and structure for support groups based on the network's interfaith volume, Seasons of Caring: Meditations for Alzheimer's and Dementia Caregivers. Nationally renowned author and retired Reverend Dr. Richard L. Morgan based the Leader's Guide on more than 60 years of pastoral care for those with AD. Seasons of Caring includes 140 original meditations representing 17 faith traditions offering words of hope, encouragement and understanding.

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