Celebrating
the Tenth Anniversary of
ACL and the National Plan to
Address Alzheimer’s Disease
by
Alison Barkoff and Tisamarie Sherry
In 2012, two significant
events set the nation in a new direction related to
Alzheimer's disease and related dementias (ADRD): The
formation of the Administration for Community Living (ACL),
and publication of the first National Plan to Address Alzheimer’s
Disease.
The National Plan is updated annually by the Office of the
Assistant Secretary for Planning and Evaluation (ASPE).
ASPE also convenes the Advisory
Council on Alzheimer's Research, Care and Services (the
Council) – composed of various federal agencies,
people with dementia, caregivers, providers, and
researchers – to provide recommendations that inform the
National Plan.
Since the National Plan was first released, both ACL and
its sister agencies have collaborated closely with each
other and ASPE to address these irreversible, progressive
brain conditions, which affect approximately 5.5 million
Americans and that estimates suggest will impact
approximately 13.8 million people in the U.S. by 2050.
These dementias can cause significant emotional, physical,
and financial strain on the individual living with the
condition, as well as their family.
The goals of the National Plan are to lead the federal
government to comprehensively:
- Prevent and effectively treat ADRD,
- Enhance care quality,
- Expand supports for people with
ADRD and their caregivers,
- Enhance public awareness,
- Improve data tracking, and
- Reduce risk factors.
The National Plan, serves
as both a strategic roadmap, through which ASPE coordinates
efforts across the federal government to address ADRD, and
a progress report. It has been used to accelerate
research, study and implement new models of care, and
expand services and support for people with dementia and
their families.
ACL has been a key partner on this work since its
inception. Programs within ACL’s Administration on Aging
have funded states, tribes and territories to offer ADRD
supports and services and, in 2014, ACL extended the reach
of HHS’s ADRD programing to bring resources directly to the
organizations delivering home- and community-based services
(HCBS). ACL used the recommendations of the Council
to identify three gaps in care and services that then
became requirements for ACLs Alzheimer’s Disease Programs
Initiative (ADPI):
- Finding and serving people living
alone with dementia,
- Supporting people living with intellectual
and development disabilities and dementia, and
- Supporting caregivers.
ACL has awarded 152
dementia-specific grants to states and community-based
organizations through the ADPI, serving more than 90,000
people living with dementia and their caregivers with
almost 2.4 million hours of direct services. These
grants have also resulted in the training of just under
100,000 professionals in the delivery of dementia-capable
care. Early in the implementation of the Plan, ACL,
the Centers for Disease Control and Prevention and the
National Institute on Aging collaborated to educate professionals
on ways in which they can inform,
educate and empower community members, people living with
dementia and their family caregivers and engage them in
research studies. The ACL Alzheimer’s and dementia programs
have a longstanding commitment to the provision of
culturally and linguistically appropriate services.
In the last ten years, the ADPI funding has resulted in
programs and resources designed to support people living
with dementia and caregivers from a broad range of
historically underserved communities including, but not
limited to, African Americans, Asian Pacific Islanders,
Latino, Native Americans/Native Alaskans and Persians.
One of ACL’s most significant accomplishments was
increasing awareness of people with intellectual and
developmental disabilities (IDD) who are at high risk for
developing dementia. Since 2014, ACL’s ADPI State and
Community Grant Program has funded 99 grants that are
helping advance knowledge and services dedicated to support
people with IDD and dementia or who are at risk of
developing dementia, with notable emphasis on people with
Down syndrome. Through ACL’s grants, tens of
thousands of service providers and family caregivers have
been trained in IDD and dementia, which has led to a
greater understanding of the benefits of early screening
and the implementation of the NTG Early Detection Screen
for Dementia (EDSD) tool.
We know from studies that people are happier and healthier
when they live in the community as opposed to institutions
such as nursing homes. To help people with IDD and ADRD
remain in their communities, ACL’s grant programs are
expanding the reach and uptake of dementia-capable home and
community-based services through targeted services,
supports and education, making them more accessible and dementia-friendly.
ACL’s National Alzheimer’s Disease Resource
Center is serving as a hub of information,
providing technical assistance to ACL grantees, and
providing information and resources available to the
broader community.
As we mark ten years since the creation of ACL and the
National Plan to Address Alzheimer’s Disease, ACL and ASPE
celebrate all that our partners and stakeholders have done
to improve the lives of people with dementia and their
families. But we all know we have a long way to go to
achieving our larger goals. We will continue to roll up our
sleeves and partner across HHS, the federal government, and
with others who share our mission. Until a cure is found,
all of us will continue press forward to reduce the impact
of Alzheimer’s disease and related dementias on
individuals, families and communities.
Addition Resources
National Plans to Address Alzheimer’s
Disease
10th Anniversary of the National Plan
to Address Alzheimer’s Disease
ACL 10th Anniversary
Celebration
HRSA’s Train Health Care Workers
About Dementia
Disability Information and Access
Line (DIAL)
Eldercare Locator
Additional information on ACL’s supports for people with
ADRD can be found here.
About the Authors
Alison Barkoff, ACL Acting Administrator and
Assistant Secretary for Aging, has worked on issues related
to community living since her youth. The sibling of an
adult brother with developmental disabilities and a civil
rights attorney, Alison is a lifelong advocate for
community living – both professionally and personally. As part of countless coalitions of
people with disabilities, older adults, and advocates, she
has fought to uphold the rights of people with disabilities
and older adults and advance policies to ensure their
access to health care, housing, employment, education, and
all other facets of community life.
Dr. Tisamarie Sherry, ASPE Deputy Assistant Secretary
for Planning and Evaluation, is a primary care physician
and health economist whose research has focused on
improving health care delivery, financing and policy to
better serve people with mental illness, substance use
disorders and disabilities. A graduate of both Princeton
and Harvard Universities, she has devoted her career to
using research to inform and improve public policy,
particularly within the Department of Health and Human
Services.
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