Pennsylvania

Congressional Profiles

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PENNSYLVANIA 2021 STATE POLICY PRIORITIES

Protect Residents In Long Term Care Settings From COVID-19 and Social Isolation

Since the beginning of the COVID-19 pandemic, long-term care (LTC) residents, their families and staff have been in crisis. Residents are suffering from social isolation and higher death rates, and families desperately want to be with their loved ones to socialize and help address their care needs. For those living with Alzheimer’s disease or other dementia, maintaining a daily routine and receiving person-centered care is paramount to their overall cognitive, physical and behavioral health. This is especially important considering that nearly half of LTC residents are living with Alzheimer’s disease or other dementia. As the threat of the pandemic continues, the Alzheimer’s Association will continue working with state leaders to ensure people living with dementia have access to high quality person-centered care while ensuring appropriate prevention and mitigation strategies remain in place to allow for safe visitation.

Increase Alzheimer’s Early Detection and Diagnosis to Improve Care Planning and Quality of Life

Approximately 50% of people living with Alzheimer’s or other dementias never receive a formal diagnosis. One in 10 Pennsylvanians aged 45 and over experience worsening confusion and memory loss, but nearly half of them have not talked to a health care provider about it. The lack of a diagnosis limits one’s ability to engage in care planning and access available resources. Physicians are on the front lines in addressing this critical issue, thus it is critical they have the training they need to make a diagnosis or referral to best serve their patient. The Alzheimer’s Association is urging state legislators to enact legislation to promote education for health care providers in early detection and diagnosis.

Equip Pennsylvania With a Dementia-Capable Workforce

Individuals with Alzheimer’s and other dementia have unique needs that often make care delivery, communication and interaction more challenging and demanding. Direct care workers in long-term care settings, in-home services and adult day settings often do not have sufficient dementia-specific knowledge to effectively support those living with the disease. At the same time, adult protective services workers, law enforcement and first responders are among the first to be contacted and interact regarding emergencies, abuse, neglect and financial exploitation. The Alzheimer’s Association will educate state policymakers on the importance of a dementia-capable workforce and advocate for policies that provide competency-based dementia training for all direct care workers, and dementia-specific training for adult protective service workers, law enforcement personnel and first responders.

Enhance the PA Caregiver Support Program to Further Benefit Alzheimer’s Caregivers

The Pennsylvania Caregiver Support Program provides caregivers with much needed support to help ease costs associated with providing care and additional care management tools to help alleviate stress. Unfortunately, current state law prevents Pennsylvania caregivers from fully benefiting from the program. The Alzheimer’s Association is supporting legislation that would address this by removing the monthly care plan cost cap, the monthly aggregate reimbursement limit, and the home modification lifetime limits and would allow the PA Department of Aging to determine monthly amounts. The legislation would also ensure that family caregivers of individuals with younger-onset Alzheimer’s have access to critical services. Increasing access to care for people with dementia will improve their quality of life and prevent or delay the need for residential long-term care.



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 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.



ADVOCACY EVENTS

Pennsylvania State Advocacy Day

April 19, 2021

Help us turn the Pennsylvania State Capitol purple virtually on April 19th by uniting your voice with other volunteer advocates from across the Commonwealth to help bring awareness to the impact of Alzheimer’s and other dementia on Pennsylvanians. Virtually meet with your state legislators, share your story and advocate for statewide policy change to 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


Sign me up to participate in the upcoming State Advocacy Day!

State Affairs Contact Jennifer Ebersole | 717-364-9102 | [email protected]



Alzheimer's Facts and Figures in Pennsylvania

Number of People Aged 65 and Older With Alzheimer's by Age

Year 65-74 75-84 85+ TOTAL
* Totals may not add due to rounding
2020 42,000 120,000 130,000 280,000
2025 47,000 140,000 130,000 320,000

Percentage change from 2020

Medicaid

$3,658

MILLION

Medicaid costs of caring for people with Alzheimer's (2020)

10.2%

change in costs from 2020 to 2025


Medicare

$26,839

per capita Medicare spending on people with dementia (in 2019 dollars)


HOSPICE (2017)

12,384

#

of people in hospice have a primary diagnosis of dementia


17%

of people in hospice with a primary diagnosis of dementia

Geriatricians

278

Number of geriatricians in 2019


116%

increase needed to meet Alzheimer's population needs in 2050

Hospitals (2017)

1,478

#

of emergency department visits per 1,000 people with dementia


22.4%

dementia patient hospital readmission rate


18.6%

increase in emergency deparment visits since 2007

Caregiving

677 Thousand

Number of Caregivers



771 Million

Total Hours of Unpaid Care



$10.1 Billion

Total Value of Unpaid Care


Number of Deaths from Alzheimer's Disease (2018)

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.

U.S. Statistics

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.



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