An estimated  280,000 individuals with Alzheimer’s Disease are living in Pennsylvania. The disease places enormous physical, emotional, and financial burdens on affected individuals and their caregivers.

In response to this health crisis Pennsylvania recently enacted a law intended to promote the early detection and treatment of Alzheimer’s and other dementias. The “Early Detection and Diagnosis of Alzheimer’s Disease or a related disorder” Act directs the Department of Health to create educational resources to aid healthcare providers in the early detection and treatment of Alzheimer’s disease.  The legislation also provides for incorporation of related information in existing Department programs and a public awareness effort.

The new law was contained in House Bill 1082 sponsored by Representative Carrie DelRosso (R- Allegheny). The legislation received the support of the Alzheimer’s Association and the Pennsylvania Medical Society.

House Bill 1082 was signed into law (Act 9) on February 9, 2022.

The Act directs the Department of Health to:

• Develop primary care workforce education resources that will assist with detection, diagnosis, treatment, and care planning referrals of individuals with Alzheimer’s disease or a related disorder. The Act lists issues the Department must include in these education resources. The targeted primary care workforce includes physicians, physician assistants, certified registered nurse practitioners and clinical nurse specialists providing health care services to adult
• Establish and maintain an informational “toolkit” which it is to integrate throughout Alzheimer’s related health care sectors. The Act sets out minimum requirements for topics the Department must cover in the toolkit. The toolkit is to be updated annually and be widely circulated to health care professionals and organizations throughout the Commonwealth.
• Promote public awareness. The Department is directed to use its website and existing outreach programs to promote understanding and awareness of Alzheimer’s disease to the public.

Bi-partisan Support for the Early Detection Act 

According to Representative DelRosso, an early diagnosis gives individuals and family members a better opportunity to prepare emotionally and financially. “Far too many Pennsylvanians live with undiagnosed Alzheimer’s disease or dementia,” said Governor Wolf in signing the legislation. “This is a tragedy, especially because we know that early diagnosis can improve care, help maintain a person’s quality of life, and reduce the financial impact of the disease. This is an important step to raise awareness and keep Pennsylvanians informed about how to recognize Alzheimer’s or dementia, and what to do if you notice those symptoms in a loved one.”

According to the Governor’s press release the” toolkit will help promote better understanding of the importance of early detection among health care workers and the public, as well as providing information about diagnosis, treatment and prevention.”

“When it comes to cognitive health, early detection and diagnosis is paramount–and early intervention is key to obtaining proper care, and planning for the future,” said Jennifer Ebersole, Director of State Government Affairs for the Alzheimer’s Association. “Our state’s aging population is one of the largest in the country, and it will only continue to grow. Legislation like this, which directly addresses the needs of Pennsylvania residents and establishes a foundation for future collaboration and intervention, are really where we see promise in Pennsylvania’s ability to address, and hopefully, curtail this public health crisis.”

From an Elder Law Attorney’s Perspective

This is well-intended legislation. But its future impact is hard to gauge. The development of these educational resources does not mean that they will be utilized by the busy clinicians who are a key to early detection, diagnosis, treatment, and care planning for Alzheimer’s. Having the Pennsylvania Medical society behind the law may help. Hopefully, this new law will not end up as just another “check-the-box” item to be marked off during the patient’s annual wellness visit.

I am concerned as to whether the Department of Health, the primary care workforce and anyone receiving the toolkit will recognize the importance of early legal planning when Alzheimer’s is detected. *

While legal planning for the future is important for every adult, the early detection of Alzheimer’s can allow the affected individual to participate much more fully in the creation of a legal plan that meets their unique circumstances and goals. And legal planning involves more than just wills and powers of attorney. A longer lead time opens up legal/financial planning options that are time sensitive like setting up an Asset Protection Trust or giving a child an interest in your home.

Clinicians and others involved with the early detection, treatment and care planning for individuals diagnosed with Alzheimer’s should receive education regarding the importance of early legal planning assistance. The Department of Health should highlight legal planning as a critical element of care planning. The Department should emphasize the need for expert legal advice in the resource materials, toolkit, and public awareness programs

Further Reading                                                                                     

Alzheimer’s Association: Advance Early Detection and Diagnosis

Pennsylvania Medical Society Letter in support of HB 1082

*Act 9 requires that the educational resources cover

(8)  Effective care planning, including treatment options, support and services, long-term care options, financial planning, advanced [sic] directives and care coordination, at all stages of dementia, including appropriate counseling and referral.

Note the failure to specifically include legal planning in this list.