How we can support caregivers and those with Alzheimer’s
The COVID-19 pandemic is causing tremendous strain on our nation, especially for caregivers, including the more than 16 million Americans who provide unpaid care for loved ones with Alzheimer’s or other dementias during a time of national uncertainty and social distancing.
In 2020, those caregivers gave 771 million total hours of unpaid care here in the state of Pennsylvania, with a value total of $10.1 billion, according to the Alzheimer’s Association.
As a former caregiver to my mother and brother, I understand firsthand the impact this disease has on families like mine across America. I continue to advocate to help increase public awareness, early detection, funding and legislative support.
I have been thankful to have had the opportunity to share my family’s story with early onset Alzheimer’s via social media platforms, print and media outlets.
I won’t stop educating families on the importance of testing, early diagnosis and how supportive the Alzheimer’s Association Delaware Valley Chapter can be for them because they have been phenomenal with me. Families such as mine cannot do this alone.
Thankfully, our political representatives can play an essential role in addressing this critical issue. Since 1999, the bipartisan Congressional Task Force on Alzheimer’s Disease has helped advance policies to improve research, care and support.
The task force helps advocates push for money to support research into Alzheimer’s and to aid those with the disease and their families.
Rep. Susan Wild, the Democrat from Pennsylvania’s 7th Congressional District, has been instrumental in supporting the Alzheimer’s Association Delaware Valley Chapter in the fight against the disease.
State Sen. Pat Browne, of Pennsylvania’s 16th District, has also been supportive with regards to Alzheimer’s and other dementias. That support can continue with Pennsylvania’s 2021 state policy priorities for Alzheimer’s disease and other dementias.
Those policy priorities were established in 2013 under an executive order from then-Gov. Tom Corbett with implementation under the state Department of Aging. They are updated each fall. The 2021 policies are:
■ Protect residents in long-term care settings from COVID-19 and social isolation.
Since the beginning of the COVID19 pandemic, long-term care 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.
■ Increase Alzheimer’s early detection and diagnosis to improve care planning and quality of life.
According to the Alzheimer’s Impact Movement, 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.
■ Equip Pennsylvania with a workforce capable of giving effective care to Alzheimer’s sufferers.
As noted in the 2021 plan, “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 [care] 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 Pennsylvania
Caregiver Support Program to further benefit Alzheimer’s caregivers.
The Pennsylvania Caregiver
Support Program provides support to help ease costs associated with providing care and additional care management tools to help alleviate stress.
State law prevents Pennsylvania caregivers from fully benefiting from the program.
The Alzheimer’s Association is supporting legislation that would remove the monthly care plan cost cap, the monthly aggregate reimbursement limit and the home modification lifetime limits and would allow the Department of Aging to determine monthly amounts.
Please join me in encouraging
Wild to help me lead the fight to end Alzheimer’s by joining the bipartisan Congressional Task Force on Alzheimer’s Disease and for Browne to support Pennsylvania’s 2021 state policy priorities for Alzheimer’s disease and other dementias.