Accessing Alzheimer’s Disease care a long road for patients

As the prevalence of Alzheimer’s Disease and related cognitive conditions rises in Pennsylvania, advocates say prevention and more integrated systems of care are essential for meeting the demands.

With an aging population, experts told the House Aging and Older Adults Services Committee that the need to address Alzheimer’s head-on is pressing.

According to Dr. Oscar Lopez, director of University of Pittsburgh’s Alzheimer’s Disease Research Center, 50% of adults over 85 and older are living with dementia.

“We are going to live longer, and because we are going to live longer, we’re going to have an increased prevalence and incidence of dementia in our population,” he said.

Lopez’s team developed biomarker technologies for the amyloid protein responsible for Alzheimer’s in the brain using PET scans. With this kind of advancement, doctors are not only positively able to identify the disease in progress, but potentially spot its biological processes 15-20 years before symptoms begin to appear.

He noted that blood tests to diagnose the disease are just around the corner, a development which will significantly increase the number of people with a diagnosis by granting access to large swaths of the population who wouldn’t otherwise receive testing, including many in more isolated rural areas and those struggling with medical expenses.

For patients who may struggle to advocate for themselves in a health care setting, concrete diagnostic tools would be a welcome change.

Christina Franzel, PA-NJ-DE region director of the Alzheimer’s Association, compared one patient’s experience with two different diagnoses. Within a day of her annual mammogram, Marsha Sanford was diagnosed with breast cancer, for which she immediately began treatment with medication, surgery, and radiation.

By contrast, her “likely” Alzheimer’s diagnosis took two years and several providers.

Jennifer Davis, a nurse practitioner who acted as the primary caregiver throughout the progression of her mother’s Alzheimer’s, said that when her mother first began to struggle with word recall, she was diagnosed with depression and anxiety.

Even as a professional in health care, Davis struggled to navigate the scattered silos of care offered by her mother’s medical team and state agencies.

“The obstacles we faced required ingenuity and money,” said Davis, who tapped into her own retirement savings after exhausting her mother’s savings for care.

Rep. Maureen Madden, D-Tobyhanna, who lost both of her parents to vascular dementia, was moved to tears listening to Davis’s testimony. She recalled the daily caregiving work required even after her mother was admitted into a memory care facility.

“It’s extremely hard to get help,” she said. “We need to do so much better.”

Experts say that even when help is available, treatment alone is not enough.

“We know now with more certainty than ever before that addressing dementia in the community will require a coordinated public health approach,” Fransel said.

Dr. James Weeden, program manager of the Chronic Disease, Injury Prevention and Violence Prevention Program at the Allegheny County Health Department, said those living with dementia require assistance from up to 70 individual community members.

The disease is the seventh leading cause of death in Allegheny County, and 16% of caregivers cited Alzheimer’s, dementia, and related cognitive disorders as the primary health concern for their patients.

While genetics play a factor, the disease is not an inevitability of aging. Weeden cites high blood pressure, diabetes and physical inactivity as major risk factors. He emphasized that public awareness and education, both for individuals and their primary care doctors, are essential to preventing the disease, and targeting much younger age groups would be beneficial.

Combating the disease doesn’t just impact quality of life for those diagnosed and their caregivers – it also has a major economic impact. Fransel said that in 2020, the Medicare cost for the conditions were $3.7 billion and is expected to have increased 10% by 2025.


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