Scoring Pennsylvania’s response to the growing Alzheimer’s and dementia crisis

In 2013, Gov. Tom Corbett commissioned a state plan to “define a response” to Pennsylvania’s growing dementia crisis. But key provisions still have not been completed seven years after its arrival.

They include a study of the economic impacts of rising dementia rates on the state and its Medicaid program, a primary funder of related services, as well as action items meant to identify barriers to care.

As part of an investigation with PublicSource, Spotlight PA asked the Pennsylvania Department of Aging for the status of roughly a dozen dementia-related action items from two plans meant to guide and gauge the state’s response: Corbett’s 2014 State Plan for Alzheimer’s Disease and Related Disorders, and Pennsylvania’s 2020-2024 State Plan on Aging.

The Department of Aging had a hand in both and said a lack of resources has slowed progress. It also credited private-sector partners that are filling in the gaps.

State funding that could be put toward some of the stalled action items, meanwhile, has remained mostly flat, even with cases climbing. In response, the department said it’s “working to prioritize our activities and focus our existing resources where we can have the most impact.”

Spotlight PA asked the department for status updates on action items and strategies with concrete recommendations and expected outcomes. Here’s what officials told us:

From the 2014 State Plan for Alzheimer’s Disease and Related Disorders:

Goal: Design and conduct a survey to learn more about “prevalence and demographic characteristics” of Pennsylvanians with Alzheimer’s disease and related disorders (ADRD).

Status: Partly implemented.

Reason: Limited space in annual telephone surveys.

Why it’s important: This recommendation would provide baseline and projected data used to guide the state’s response and best target resources.

Goal: Conduct an economic analysis of the negative impact of ADRD on Pennsylvania, including the cost to Medicaid and other state programs.

Status: Incomplete.

Reason: Lack of resources.

Why it’s important: Advocates and experts have long warned about the impact of costly treatments for dementia disorders on vital safety-net programs already under financial strain.

Goal: Develop a state communications strategy to educate the public on ADRD and how to live well with it. Allocate sufficient revenues to have a meaningful advertising campaign.

Status: Incomplete.

Reason: Lack of resources.

Added context: While no formal, overarching state communications plan exists, the Department of Aging said it is coordinating outreach and education initiatives with private-sector partners.

Why it’s important: Public awareness can erode stigma and barriers to care. It can also improve patient outcomes.

Goal: Conduct needs assessments in every county to identify “strengths, gaps, and barriers” to appropriate dementia care.

Status: Incomplete.

Reason: Lack of resources.

Why it’s important: Easy access to sufficient care ensures better patient outcomes.

Goal: Develop referral processes for private geriatric care management for those who can afford it.

Status: Incomplete.

Reason: Lack of resources.

Why it’s important: Geriatric care management helps loved ones and dementia patients make tough decisions, find necessary resources, and manage stress.

Goal: Create and implement an online continuing medical education (CME) accredited program to educate doctors and staff in identifying and treating dementia.

Status: Incomplete.

Reason: Lack of resources.

Why it’s important: Proper diagnosis can improve care and outcomes. Best practices for dementia care have also evolved over time.

Goal: Explore legislation to provide financial support to caregivers.

Status: Achieved.

Reason: The state’s Caregiver Support Program was recently expanded, offering broader reimbursements for unpaid caregivers, along with training, help finding resources, and other support mechanisms.

Why it’s important: The Caregiver Support Program offers limited help covering costs related to caring for a loved one with dementia, everything from home modifications to diapers.

Goal: Develop and/or promote programs to encourage research and technology development in the area of ADRD.

Status: In progress.

Reason: The state recently awarded $11.3 million — money from a years-old tobacco lawsuit settlement — to Pennsylvania grant recipients focusing on Alzheimer’s research.

Why it’s important: There is still much we don’t know about Alzheimer’s disease and related disorders, and new information could save lives.

Goal: Establish core curricula for ADRD training in Pennsylvania for health care professionals at all levels, drawing on tools and training requirements that already exist.

Status: Incomplete.

Reason: The state says this is still in the planning stages.

Why it’s important: More dementia-focused training is needed for health care workers of all stripes, experts say.

From the 2020-2024 State Plan on Aging:

Goal: Conduct 50 “Dementia Friends” information sessions for Area Agencies on Aging, senior center staff, and various community members/entities.

Status: Achieved.

Reason: More than 140 sessions have been conducted so far.

Why it’s important: Public awareness can erode stigma and barriers to care. It can also improve patient outcomes.

Goal: Conduct 30 sessions with Area Agencies on Aging, senior center staff, and others to train Alzheimer’s awareness ambassadors called “Dementia Friends Champions.”

Status: In progress.

Reason: A total of 19 sessions have been conducted so far. The target date for completion is December of 2021.

Why it’s important: Public awareness can erode stigma and barriers to care. It can also improve patient outcomes.

Goal: Translate “Dementia Friends/Champions” materials into additional languages to recruit “Champions” from various cultural and ethnic backgrounds.

Status: In progress.

Reason: The materials have been translated into 19 languages so far.

Why it’s important: Racial and ethnic minority groups tend to face extra barriers when seeking dementia care, resources, and guidance. They are also more likely to be diagnosed with Alzheimer’s and related dementias.

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