Build a Dementia-Capable Workforce
Equip Pennsylvania with a Dementia-Capable Workforce
Individuals with Alzheimer’s and other dementias have unique needs that often make care delivery, communication and interaction with more challenging and demanding to those interacting with them. Direct care workers and administrative staff working in long-term care facilities, in-home services, and adult day settings often do not have sufficient dementia-specific knowledge to effectively support those living with the disease. People living with Alzheimer’s and other dementia - especially in the middle or later stages - are often unable to complete activities of daily living without assistance, can act out aggressively, lose the ability to use words, remember what happened or retrace their steps, or might not even be able to verbally communicate at all. Formal training is essential to ensure the unique needs of those living with the disease are met and understood so that they receive quality care and their overall safety and well-being enhanced. It is critical that Pennsylvania's lawmakers prioritize quality care for people living with dementia and ensure that all direct care providers receive comprehensive, competency-based dementia training.
Increase Access to Home and Community-Based Services
Allow Medicaid Applicants Living with Dementia to Access Critical Services - Support HB 51/SB 277
Home and community-based services (HCBS) - such as respite care, in-home services, adult day centers and transportation services - provide essential supports that people living with Alzheimer’s and other dementias need to stay in their homes and active in their communities for as long as possible. Unfortunately, in Pennsylvania there are complex challenges associated with accessing and delivering HCBS that include cost, adequate access and awareness of these vital services. The progressive nature of Alzheimer’s demands different types of care throughout the different stages of the disease. Timely access to HCBS improves the quality of life for individuals and families affected by dementia, reduces state government costs, and reduces the financial, emotional and physical health burdens on families. In order to ensure timely access to critical HCBS for Pennsylvanians living with dementia, House Bill 51/Senate Senate 277 has been introduced. This legislation aims to deem Medicaid applicants eligible to begin receiving HCBS right away, without having to wait until their Medicaid paperwork is fully processed. In Pennsylvania in some cases it can take up to nine months to process paperwork, thus delaying the start of HCBS. As a result, many people are forced to be entered into a long-term care facility because they cannot wait until the paperwork is processed to being received needed care.
Advance Alzheimer's Policy
Include Dementia-Specific Protections in the Update of OAPSA
The Older Adult Protective Services Act (OAPSA) provides for the health, safety and welfare of older Pennsylvanians over the age of 60 who lack the capacity to protect themselves and are at imminent risk of abuse, neglect, exploitation or abandonment. Those living with Alzheimer’s and other dementias are especially vulnerable to elder abuse because the disease may prevent them from reporting the abuse, recognizing it, or even remembering that it occurred in the first place. While OAPSA has helped to protect the health, safety and welfare of older Pennsylvanians, it has not been updated since its inception in 1987 and has not kept pace with the changing dynamics of elder abuse, particularly in the area of financial exploitation - the fastest growing form of elder abuse - and increasing referral investigations and substantiated reports of elder abuse. The Alzheimer’s Association advocates support for Senate Bill 819 and House Bill 1930, legislation that rewrites OAPSA and addresses the issues of greatest concern to those living with Alzheimer’s disease and other dementia to further protect them from abuse, neglect and financial exploitation.
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
May 04, 2020
Be part of the movement to turn the Pennsylvania State Capitol purple and lend your voice with volunteer advocates from across the Commonwealth as we bring more awareness about the impact Alzheimer’s and other dementia have on hundreds-of-thousands Pennsylvanians to the Pennsylvania General Assembly. Meet with your state legislators, share your story and advocate for statewide policy change that can improve the care, support and services for those living with Alzheimer’s and other dementia and the people caring for them.
Sign Up to Learn More About Advocacy Opportunities in Pennsylvania
State Affairs Contact Jennifer Ebersole | 717-364-9102 | [email protected]
Enter your address here to see your elected officials' positions on Alzheimer's and ways you can contact them to support the Alzheimer's community.
Number of People Aged 65 and Older With Alzheimer's by Age
Percentage change from 2020
Medicaid costs of caring for people with Alzheimer's (2020)
change in costs from 2020 to 2025
per capita Medicare spending on people with dementia (in 2019 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
increase in emergency deparment visits since 2007
Number of Caregivers
Total Hours of Unpaid Care
Total Value of Unpaid Care
|4,064||total deaths in Pennsylvania|
|6th||leading cause of death in Pennsylvania|
For more information, view the 2020 Alzheimer's Disease Facts and Figures report at alz.org/facts.
Over 5 million Americans are living with Alzheimer's, and as many as 13.8 million will have the disease in 2050. The cost of caring for those with Alzheimer's and other dementias is estimated to total $305 billion in 2020, increasing to $1.1 trillion (in today's dollars) by mid-century. Nearly 1 in 3 seniors who dies each year has Alzheimer's or another dementia.