As the population of people living with Alzheimer’s and other dementia grows, so too will the need for unpaid caregiving. Yet, caregiving can take a toll on caregivers’ health, well-being, and productivity. This is particularly the case for dementia caregiving, which often entails prolonged and intensive assistance.

Primed for implementation: HBI Road Map

Action W-7 — Educate health care professionals to be mindful of the health risks for caregivers, encourage caregivers’ use of available information and tools, and make referrals to supportive programs and services.

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Dementia caregiving is a challenging public health issue. It is highly prevalent and affects increasing numbers of individuals and families across all races, ethnicities, and cultures. The cost to society is high when paid or formal care — such as residential or long-term care — becomes necessary because unpaid dementia caregiving cannot be sustained or may no longer be safe and sufficient. Strong, supported caregiving may help delay or defer expensive institutionalization and help those living with dementia remain in their homes and in the community for longer.

Communities face a growing challenge to improve knowledge and awareness among caregivers, ensure universal availability and access to needed services and supports, minimize fragmentation and inadequate coordination, and fill gaps that preclude equity in caregiving. Surmounting these challenges necessitates changes in policies, systems, and environments. The unique capabilities of public health are needed, including data collection and assessment, partnership and coalition building, planning, and evaluation. The ultimate goal is to embed support for caregiving across the full community so caregivers can continue providing vital, effective care in ways that protect both their health and the health of people living with dementia.

For an overview of these issues:

State-level and aggregated data on dementia caregiving from the Behavioral Risk Factor Surveillance System is available to inform public health action. Learn more about related topics, including: Advance Early Detection and Diagnosis, Educate and Train Professionals and Safety and Injury Prevention.

State successes: Supporting caregivers statewide

The Alzheimer’s Disease Caregiver Support Initiative through the New York State Department of Health is designed to support caregivers and people living with dementia in the community using evidence-based strategies. Read the executive summary and full evaluation from the initiative’s first year to learn more.

As part of the Dementia Action Collaborative, the Washington State Department of Health developed and released the Washington State Dementia Road Map for Caregivers. This guide is designed to offer direction, explanation, and tips to help caregivers navigate the difficult journey of caring for someone with dementia.

The Louisiana Department of Health (LDH) created Caregivers in the Workplace, an online training module designed to educate supervisors within LDH about ways to support their employees who are also caregivers. The module also educated supervisors about the unique needs and challenges faced by caring for someone with dementia (view the virtual case study below). 

Dementia Caregiving — Virtual Case Study

Learn how the Louisiana Department of Health educated state employees about the challenges of dementia caregiving.

 

 

State-specific action you can take

Communities are taking public health action against Alzheimer’s and other dementias. Find out how the disease impacts your state and what you can do to make Alzheimer's the next public health success story.

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Featured Resources

Alzheimer's Association & Centers for Disease Control and Prevention Supporting Caregivers - Healthy Brain Initiative Issue Map
Centers for Disease Control and Prevention Caregiving for Family and Friends: A Public Health Issue
Native America Calling Caring for Relatives with Dementia
National Indian Council on Aging Savvy Caregiver in Indian Country

 
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State University of New York-Plattsburgh To support caregivers in the St. Regis Mohawk Nation, an Alzheimer's Navigator delivers education and coordinates support groups throughout the area. Additional services (including respite, transportation assistance, and caregiving training) are offered.
AL Alabama Department of Public Health Alabama Department of Public Health disseminated BRFSS information on cognitive decline to different programs within the department and to shared the materials at health fairs, conferences, and other events in June 2018, in recognition of Alzheimer's & Brain Awareness Month.
AZ Arizona Department of Health Services Arizona Department of Health Services and partners developed educational fact sheets about dementia, tailored to racially and ethnically diverse populations (via NACDD grant). The department also added information about Alzheimer’s and dementia caregiving to its website
AZ Arizona Department of Health Services To help expand caregiver support statewide, the Arizona Department of Health Services launched and joined the Arizona Dementia Caregivers Alliance (with over a dozen additional organizations). As part of this Alliance, partnered with a community organization (Duet) to expand its caregiver support programming through local health departments.
DC District of Columbia Department of Health DC Department of Health conducted a caregiver outreach campaign through radio and print media, and held a caregiver conference to increase knowledge of supports and services
FL Florida Department of Health Enhanced knowledge of cognitive decline, Alzheimer’s and other dementias, caregiving, and community resources at the Symposium through sessions for caregivers and the general public.
HI Hawaii State Department of Health Through the Hawaii Alzheimer's Disease Initiative (HADI) - a collaboration of state agency and community partners - developed a memory care navigator program to connect the public to long-term care resources
HI Hawaii State Department of Health Through the Hawaii Alzheimer's Disease Initiative (HADI) - a collaboration of state agency and community partners - established a dementia speakers bureau to provide education to caregivers and the community
ID Idaho Department of Health & Welfare Describes the demographics of caregiving adults in Idaho and examines disparities between caregivers and non-caregivers in health outcomes, access to health care, and health-related behaviors
IL Department of Public Health Illinois Department of Public Health analyzed existing data sources on Alzheimer’s disease and caregiving
IN Indiana Department of Health Utilized BRFSS data to examine psychological distress among informal caregivers across the state
MD Maryland Department of Health Promoted advance directives by collaborating with: 1) the Maryland Faith Health Network, which educated more than 500 Marylanders about advance care planning through health fairs, faith-based events, and end-of-life educational seminars; and 2) three local health improvement coalitions, which educated almost 150 participants in seven courses on advance planning.
MN Minnesota Department of Health Informed efforts to make communities more supportive of people living with dementia and their caregivers by integrating cognitive and caregiver surveillance data and related resources into county fact sheets; MDH prioritized counties that have a high proportion of at-risk older adults.
MN Benton, Sherburne, and Stearns Countie County public health departments are developing a guide for employers on how to integrate dementia awareness and education, plus caregiver support, into worksite wellness programs
MO Missouri Department of Health and Social Services Added "Honor a Caregiver during National Alzheimer’s Disease Awareness Month" to the MO DHSS homepage banner during Novement 2018 - clicking on the photo would take visitors to alz.org
MO Missouri Department of Health and Social Services Expand DHSS efforts on Alzheimer’s and other dementias as public health issues by incorporating cognition and caregiving into the State Health Improvement Plan, Coordinated Chronic Disease Plan, and Healthy Aging Plan.
MO Saint Louis University's College for Public Health and Social Justice The Saint Louis University's College for Public Health and Social Justice surveyed local public health agencies in Missouri, which revealed a need for more information about supports available to care partners for people with Alzheimer’s disease. The college worked with the Missouri Department of Health and Senior Services and the Alzheimer’s Association, St. Louis Chapter, to send care partner brochures and resource sheets to all local public health agencies in the state.
MT Montana Department of Public Health and Human Services Montana Department of Public Health and Human Services filmed and distributed clips about the basics of Alzheimer's, early warning signs of dementia, and how people living with dementia and their caregivers can access services.
NM New Mexico Department of Health Improved support for caregivers of people living with dementia by co-marketing chronic disease selfmanagement courses and caregiving education programs; initial outreach resulted in more than 150 caregiver-participants.
NM Department of Health New Mexico Department of Public Health’s September 2016 Employee Wellness newsletter (sent to 3,200 state employees) focused on healthy aging. It included basic information on education and support for family caregivers of people with Alzheimer’s and other dementias; the link between healthy lifestyle and brain health, with encouragement to use the ACL Brain Health Resource toolkit; and advance care planning (general).
NY New York State Department of Health New York State Department of Health, through its partnership with the University of Albany, conducted an online training for health care providers: Determining Caregiver Needs and Well Being.
NY State Department of Health New York State Department of Health joined the Alzheimer’s Workplace Alliance and is providing extensive training for employees on Alzheimer’s and caregiving in partnership with the Alzheimer’s Association. As a first step, department leaders posted an article on its intranet to announce this new effort, and the article will be shared with other NY state agencies to encourage them to join as well.
OR Department of Human Services Oregon Health Authority and Oregon Department of Human Services conduct a statewide summit on Healthy Aging and the Healthy Brain Initiative during which both the Oregon Chapter and the Oregon Public Health Division educated health and human services professionals about the role of public health in addressing Alzheimer’s and caregiving.
OR Tribal Health Agencies Tribal health agencies added a session on caregiving for people with Alzheimer’s and other dementias in their annual caregiver summit.
RI Rhode Island Department of Health Established a new program - Alzheimer's Disease and Related Disorders - within the Rhode Island Department of Health to better assess and track state progress on risk reduction of cognitive decline and meeting the needs of people with dementia.
SC Department of Health and Environmental Control South Carolina Department of Health and Environmental Control involved local Alzheimer’s chapters in the development of a strategic plan aimed at integrating cognitive impairment and caregiver issues.
SC Department of Health and Environmental Control South Carolina Department of Health and Environmental Control, Division of Healthy Aging, included an article titled “November is Alzheimer’s Disease Awareness Month” in its monthly newsletter. The article provides basic information about Alzheimer’s disease.
SD South Dakota Department of Health Alzheimer's Association provided regular education to surveyors within the Office of Licensure and Certification which oversees care facilities across the state.
TX Texas Department of State Health Services Texas Department of State Health Services is conducting a needs assessment and gap analysis of caregiver supports and services statewide.
UT Utah Department of Health Prepared health care and other community professionals to effectively interact with people living with dementia by collaborating with the University of South Carolina to train over 50 people to teach Dementia Dialogues; the newly trained instructors delivered the five-session course to more than 500 community caregivers and health care workers over a 12-month period.
UT Department of Health Utah Department of Health partnered with the Alzheimer’s Association, Utah Chapter, to create a resource guide for health care providers on cognitive assessment tools, resources available for patient referrals, and the care planning billing code (99483) for comprehensive cognitive assessment and care planning (including the role of care partners).
VA Virginia Department of Health Virginia Department of Health added weblinks to the department's website on Alzheimer's, dementia, and brain health
WI Wisconsin Department of Health Services Collaborated in implementation of state Alzheimer's disease plan by helping develop a caregiver road map titled Dementia Road Map: A Guide for Family and Care Partners.
WI Wisconsin Department of Health Services Developed online training for family caregivers of people with Alzheimer’s disease or other dementia and provides a list of resources for caregivers (see case study above)
WI Wisconsin Department of Health Services Wisconsin Department of Health Services and a designated group of stakeholders, the University of Wisconsin Oshkosh (UWO), Center for Career Development and Employability Training (CCDET) is developing a series of free, online trainings related to dementia care for crisis responders, caregivers, healthcare providers, family and community members, and other professionals. A Spanish-language version is available.
WI Department of Health Services Wisconsin’s secretary of health sent a letter to the Wisconsin Medical Society encouraging health care providers and organizations to use available resources to promote awareness of cognitive impairment and dementia within the state, to enhance early detection and diagnosis, and to make referrals to in-state resources.

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