Increase Public Awareness, Early Detection And Diagnosis
Addressing Alzheimer's as a Public Health Crisis: Implement the Healthy Brain Initiative Roadmap
Early Detection and Diagnosis: Quality care for people with Alzheimer's disease and other dementias starts with an early, documented diagnosis, including disclosure of the diagnosis. However, most people who have been diagnosed with Alzheimer's dementia are not aware of their diagnosis. Evidence indicates that only about half of those with Alzheimer's dementia have been diagnosed. Among those seniors who have been diagnosed with Alzheimer's dementia, only 33 percent are even aware that they have the disease. Even when including caregivers, 45 percent of those diagnosed with Alzheimer's or their caregivers are aware of the diagnosis. We aim to undertake efforts to educate health care providers on the importance of early detection and timely diagnosis of cognitive impairment, validated cognitive assessment tools, the value of a Medicare Annual Wellness visit for cognitive health, and the Medicare care planning billing code for individuals with cognitive impairment. Brain Health and Risk Reduction: Research suggests that about half of ADRD risk is linked to seven modifiable lifestyle factors: diabetes, hypertension, obesity, smoking, depression, education, and physical activity. Through work with legislators and key departments, our goal is to develop a communications strategy to increase public understanding of cognitive health and the connection between improved heart health and improved brain health, as well as the link between depression and cognitive health. Messages will be multipronged, science based, and targeted to all Pennsylvanians, including underserved and vulnerable populations. In line with the recommendations of the existing Pennsylvania ADRD State Plan and the CDC Healthy Brain Initiative Roadmap, we are seeking commitments from the PA Depts. of Aging and Health to integrate brain health messaging into current public health campaigns and to educate physicians and clinicians on the importance of early detection and timely diagnosis, validated cognitive assessment tools, the value of a Medicare Annual Wellness visit for cognitive health, and the permanent Medicare care planning code. We are asking that $50,000 be allocated to these efforts in the current fiscal year.
Increase Access to Home and Community-Based Services
Enabling Pennsylvanians Living with Dementia to Remain at Home
Home and community-based services such as in-home personal care, adult day and respite care services allow people with dementia to remain in their homes while providing family caregivers much needed support. Presumptive eligibility legislation would enable Pennsylvanians to receive Medicaid-funded home care once an abbreviated Medicaid financial assessment and functional evaluation are completed. This is the same process that nursing homes have been permitted to follow for decades, and now it's time to allow that same process when a person wants to stay at home to receive care. Not only do most people want to remain at home as they age, it is less expensive for the state to pay for in-home care than for costly nursing home care. In 2019, we will pursue legislation to establish presumptive eligibility to ensure access to both home and community-based services in a way that ensures the ability of those with dementia to live in the most appropriate setting and reducing waiting times for available services. In addition, we will also pursue strategies with regards to funding for Alzheimer's-specific respite programs at appropriate levels, regardless of an individual's age or financial status.
Enhance the Quality of Care in Residential Settings
Helping Seniors Stay at Home
We plan to pursue legislation that would enable older Pennsylvanians to get Medicaid-funded home care once an abbreviated Medicaid financial assessment and functional evaluation are completed. This is the same process that nursing homes have been permitted to follow for decades, and now it's time to allow that same process when a person wants to stay at home to receive care. Not only do most people want to remain at home as they age, it is cheaper for the state to pay for in-home care than for costly nursing home care.
Advance Alzheimer's Policy
State Dementia Coordinator: Working towards making Pennsylvania a more dementia-capable state.
Over 400,000 individuals are living with Alzheimer's Disease or a related disorder in the commonwealth and the toll of this disease extends beyond those affected to their families, friends, and communities. Alzheimer's is a growing public health crisis, and due to this epidemic, in 2013, Executive Order 2013-01 was signed, establishing the Alzheimer's Disease Planning Committee. The committee, along with input from the public, produced the Pennsylvania State Plan for Alzheimer's Disease and Related Disorders and the plan was approved in 2014. The plan outlines seven key recommendations to develop a strategy to mobilize the commonwealth's response to the anticipated increase in the incidence of Alzheimer's Disease and related disorders in Pennsylvania. In May of 2018, the Pennsylvania Department of Aging announced the formation of Pennsylvania's Alzheimer's State Plan Task Force. We advocate for the creation and funding of a Dementia Services Coordinator position within Pennsylvania State Government to oversee Pennsylvania's dementia capability and working with the Pennsylvania Alzheimer's State Plan Task Force to coordinate the implementation of Pennsylvania's State Plan for ADRD. We plan to work with the Governor's office and Departments of Aging and Health for funding to establish a state dementia coordinator position within the Commonwealth of Pennsylvania.
Pennsylvania State Plan Overview
In February 2013, Governor Tom Corbett issued Executive Order 2013-01 to establish the Pennsylvania Alzheimer's Disease Planning Committee. Twenty-six members were appointed to the committee which included a Pennsylvanian living with Alzheimer's disease, representatives of families and caregivers of persons living with and caring for individuals living with ADRD; the aging network, other Departments of state, providers from across the care continuum, leading researchers in pursuit of a cure and better care, and members of the legislature. Chaired by the Secretary of the Department of Aging, the Planning Committee gathered public input from across the state to inform their recommendations. The Pennsylvania State Plan for Alzheimer's Disease and Related Disorders was published in February 2014. The Department of Aging is currently focused on the implementation of the state plan and hosts an Annual Alzheimer's Disease and Related Disorders Forum each fall.
Pennsylvania State Advocacy Day
June 03, 2019
2019 Pennsylvania Advocacy Day - Harrisburg, PA Pennsylvania Alzheimer's Association is hosting the 2019 Pennsylvania Advocacy Day in Harrisburg, PA at the Pennsylvania State Capitol. Highlights: Advocacy Issue Training - Advocates will receive an overview of state legislative priority "asks", how to incorporate their Alzheimer's Disease personal story to most effectively and strategically tie-in with the legislative asks, and an opportunity to ask questions to the Pennsylvania government affairs team. Legislative Meetings - Advocates will meet face-to-face with state elected officials and/or their legislative staff to share their story and make the legislative ask. Afternoon Panel Discussion: Advocates will hear more about how state and federal advocacy together can change the face of Alzheimer's Disease and Related Disorder throughout their local community. Panel participants could include representative(s) from the Alzheimer's Impact Movement, advocates, a state agency representative (Departments of Aging, Health or Human Services) and/or key legislative leaders.
2020 Advocacy Forum
March 22-24, 2020 alz.org/forum
As an Alzheimer's advocate, you've worked to advance critical public policy, making a difference in the lives of all those impacted by Alzheimer's. Together we've achieved great increases in federal Alzheimer's research funding and secured critical advances in care and support. But we can't take our successes for granted — we need to keep the pressure on.
Join us in Washington for an inspiring three-day event filled with networking, training and education.
Be part of the movement that's making a difference in the fight against Alzheimer's.
Sign Up to Learn More About Advocacy Opportunities in Pennsylvania
State Affairs Contact Jennifer Ebersole | | [email protected]
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Number of People Aged 65 and Older With Alzheimer's by Age
Percentage change from 2019
Medicaid costs of caring for people with Alzheimer's (2019)
change in costs from 2019 to 2025
per capita Medicare spending on people with dementia (in 2018 dollars)
of people in hospice have a primary diagnosis of dementia
of people in hospice with a primary diagnosis of dementia
of emergency department visits per 1,000 people with dementia
dementia patient hospital readmission rate
Number of Caregivers
Total Hours of Unpaid Care
Total Value of Unpaid Care
Higher Health Costs of Caregivers
|6th||leading cause of death in Pennsylvania|
For more information, view the 2019 Alzheimer's Disease Facts and Figures report at alz.org/facts.
Over 5 million Americans are living with Alzheimer's, and as many as 14 million will have the disease in 2050. The cost of caring for those with Alzheimer's and other dementias is estimated to total $290 billion in 2019, increasing to $1.1 trillion (in today's dollars) by mid-century. Nearly one in every three seniors who dies each year has Alzheimer's or another dementia.