Pennsylvania State Alzheimer’s Plan Overview
In February 2013, Governor Tom Corbett issued Executive Order 2013-01 to establish the Pennsylvania Alzheimer’s Disease Planning Committee. The committee included a Pennsylvanian living with Alzheimer’s disease, family members and caregivers of people living with dementia, the aging network, other state agencies, 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 2024 Policy Priorities
Improve Access to Biomarker Testing
With the historic Food and Drug Administration (FDA) approval of treatments that slow the progression of Alzheimer’s in the early stages, early detection and diagnosis is even more critical to ensure individuals receive the most benefit at the earliest point possible. Biomarkers offer one of the most promising paths to improve dementia detection, diagnosis and treatment. Yet these critical tests remain out of reach for many as insurance coverage is failing to keep pace with innovations and advancements in treatments. The Alzheimer’s Association is urging state lawmakers to pass Senate Bill 964 and House Bill 1754 to expand insurance coverage of comprehensive biomarker testing. Without this legislation, dementia diagnoses may take up to two years, increasing the long-term costs to the individual, family and the state.
Support Funding for a Dementia-Capable State Infrastructure
To strengthen Pennsylvania’s capability to support individuals living with dementia and their caregivers, a robust state government response is needed. Establishing full-time state agency positions dedicated to supporting dementia initiatives across the state can help mitigate the growing impact of the disease. The Alzheimer’s Association is urging state policymakers to appropriate $750,000 to the Department of Health to establish a full-time Alzheimer’s Disease and Related Disorders (ADRD) Director and program staff, provide support to an ADRD Advisory Council, oversee implementation of the State Alzheimer’s Plan and strengthen data collection on cognitive decline and caregivers. The Association is additionally urging lawmakers to support Senate Bill 840 to establish the newly hired positions and Council in statute and codify the State Plan.
Empower Guardians with Dementia Training
Due to the impact of dementia on a person’s ability to make decisions and in the absence of other advanced directives, people living with Alzheimer’s may need the assistance of a guardian. Once appointed, a guardian may make decisions for the individual that relate to the person’s health, well-being and economic interest. With such responsibility, it is imperative that appointed guardians receive dementia-specific training. Following the enactment of Act 61 of 2023, which made important reforms to guardianship law, the Alzheimer’s Association is urging the Administrative Offices of Pennsylvania Courts to require all new and existing professional guardians to receive dementia-specific training every two years.
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282,100
people living with Alzheimer’s in Pennsylvania
465,000
Pennsylvanians are providing unpaid care
$3.7 Billion
Medicaid cost of caring for people living with Alzheimer’s (2020)
4,109
deaths from Alzheimer’s in 2021
17%
in hospice with a primary diagnosis of dementia
120.1%
increase of geriatricians in Pennsylvania needed to meet the demand in 2050
Resources to Drive Change in Pennsylvania
The following resources developed by AIM and the Alzheimer’s Association will help you learn more about the issues impacting people living with Alzheimer’s and their caregivers, how Pennsylvania policymakers are addressing these gaps, and how you can help drive change.