Delivering on its mission, the Alzheimer’s Association provided care and support more than 7.5 million times in FY21 through channels including alz.org, care consultations, support groups, education programs and information. According to surveys, constituents are highly satisfied with Association programs and services and would recommend them to others.
The Association’s national 24/7 Helpline is available around the clock, 365 days a year. Helpline specialists and master’s-level clinicians received more than 220,000 calls in FY21, offering free confidential support and information to people facing Alzheimer’s and all other dementia. The Helpline continued to operate in an all-virtual environment due to the COVID-19 pandemic. The service is partially funded by a five-year, $6.2 million federal grant awarded by the Department of Health and Human Services Administration for Community Living.
The Association launched an online training program for professional care workers in long-term and community-based settings informed by its nationally recognized Dementia Care Practice Recommendations. The essentiALZ® – Alzheimer’s Association Training and Certification educates professional care workers on applying current evidence-based, person-centered care practices when caring for people living with dementia. Over 1,300 individuals have completed the training and passed the certification exam.
To help care for people living with dementia in long-term and community-based care settings, the Association worked with care industry leaders to author the white paper “Response to COVID-19 in Long-Term and Community-Based Care.” The paper highlighted five crucial topics: caring for residents and families; caring for staff; seeking standardized guidance; the regulatory response; and preparing for ongoing and new challenges in a post-COVID-19 pandemic world.
The Association spoke out strongly for better requirements and increased testing capability in response to the Centers for Medicare and Medicaid Services’ (CMS) Coronavirus Commission for Safety and Quality in Nursing Homes report — which the Association said failed to provide the practical guidance, tools and funding needed to slow COVID-19 deaths in long-term care settings. The Association implored the federal government to do more to ensure residential care communities have the resources needed to protect residents and staff, and to provide a gateway to allow visitation for families to end social isolation.
When the CMS released new visitation guidelines for long-term care settings that expanded the ability for caregivers and families to visit their loved ones in person, the Association publicly welcomed the change while continuing to advocate for extra precautions to protect long-term care residents. The Association offered detailed guidance to the Alzheimer’s and dementia community on how to best follow or implement CMS guidelines.
To directly help care providers implement best practices during the pandemic, the Association was approved as a training center for the AHRQ Echo National Nursing Home COVID-19 Action Network. This effort offered 348 nursing homes, representing 42,000 licensed beds, weekly training sessions focused on infection control, quality improvement, and dementia care and support.
The Association’s Alzheimer’s and Dementia Care ECHO Program collaborated with the West Virginia Clinical and Translational Science Institute to launch WV Project ECHO, a program centered on memory health that provides primary care clinicians access to vital care and support quality improvement services.
To connect with constituents in new and innovative ways, the Association launched ALZ Talks, a series of 30-minute webinars that shared information on early detection and other key care and support topics. Streaming on social media, the webinars have reached nearly 12,000 constituents and have been viewed over 320,000 times.
The Centers for Disease Control and Prevention selected the Association as the BOLD Public Health Center of Excellence on Dementia Risk Reduction. Through the center, the Association is leading a national effort to develop and disseminate public health strategies and resources aimed at reducing the risk of cognitive decline and dementia. The center translates the latest science into tools and materials that public health agencies can use in all communities.
The Alzheimer’s Association National Early-Stage Advisory Group comprises individuals living in the early stage of Alzheimer’s or another dementia and their care partners. Advisors share their experiences through media outlets and other public channels in order to raise awareness, reduce stigma and provide guidance on the development of programs and services. In FY21, advisors’ activity generated nearly 30 million media impressions in local and national markets. Group members shared their experiences as part of the Participant Follow-Up Improvement in Research Studies and Trials (Participant FIRST) workgroup, an effort led by the Association and the University of Pennsylvania to improve communication with clinical trial participants. Advisors lent their expertise as part of the National Institute on Aging’s IMPACT Collaborative Lived Experience Panel. Current and former advisors and care partners also participated in a virtual listening session with Food and Drug Administration officials and advocated for the approval of aducanumab, the new Alzheimer’s disease treatment.
Through its health systems initiative, the Association continued to work with over 300 health systems nationwide to enhance their dementia care by providing clinical settings solutions to improve health outcomes and manage the cost of care for people living with Alzheimer’s and all other dementia. Health systems partner with the Association and commit to policy changes; in FY21, over 7.2 million people benefited from increased access to dementia care through these changes. A highlight of the work was managed care company Aetna enhancing its system to benefit over 3.4 million people.
More than 816,000 searches were conducted on the Alzheimer’s Association & AARP Community Resource Finder, a database of dementia and aging-related resources that connects individuals facing dementia with local programs and services. This represents a 45% increase over FY20, with the top three searches centering on Association programs, home care and housing options.
ALZConnected®, a free online community for people living dementia and their caregivers, gained nearly 12,000 new members, recording more than 10,000 posts by community members and providing over 688,000 user sessions. Nearly 70,000 user sessions took place on Alzheimer’s Navigator®, an online assessment tool allowing people living with the disease and caregivers to create personalized action plans.
A partnership with the National Charity League (NCL) was announced in FY21. NCL is a membership organization with more than 200,000 mothers and daughters comprising nearly 300 chapters across the country. NCL will hold education sessions on dementia for its members, promote awareness of the warning signs of Alzheimer’s on social media platforms and raise funds for The Longest Day®.