Diagnosing and treating Alzheimer’s disease has not changed much in the past 25 years. However, new research may enable earlier diagnosis and treatment according to panelists at one Health Journalism 2018 session.
Alzheimer’s disease places an unacceptable and intolerable toll on people with the condition, their families, and the health system, noted experts in the session, “What reporters need to know about the changing scene of Alzheimer’s research.”
Science has made great strides in the past few years, thanks to breakthroughs in genome sequencing which can pinpoint a person’s risk of developing the disease years before outward symptoms are noticeable, according to Eric Reiman, M.D., executive director of Banner Alzheimer’s Institute and chief executive officer at Banner Research.
“We can identify individuals at risk and target promising prevention therapies which may even stop disease progression,” Reiman told the audience. “Some treatments may have profound impact if we can target the right people, with the right treatment, at the right time.”
Researchers think that changes in the brain, which occur when protein pieces called beta-amyloid clump together, gradually build up into plaques. This may disrupt signals between brain cells and trigger inflammation, leading to cognitive impairment. Researchers are working to identify these buildups early on and develop treatments which halt their progression. Researchers must tap cerebral spinal fluid to help pinpoint disease biomarkers and track disease progression. It’s an expensive and highly invasive process which can’t be replicated in a primary care setting. “However, new promising blood tests may help lower costs and enable physicians to more easily test for disease risk,” said Reiman. He said delaying disease onset by even five years means cutting Alzheimer’s prevalence in half.
This has significant cost and social implications, said Julia Wallace, an Alzheimer’s Association national board member. She talked about her family’s experiences with the disease, reminding the audience that this sixth-leading killer of adults in the United States cannot be prevented or cured. Nearly 16 million unpaid caregivers provide some 18.4 billion hours of care, worth an estimated $238 billion, according to the association.
Without a cure, costs will only continue to rise. The number of those with Alzheimer’s and other dementias in the United States is expected to jump to 14 million by 2050, up from 5.7 million today. Moreover, health costs could nearly quadruple in that time, to $1.1 trillion. If those at risk of Alzheimer’s were diagnosed in the mild cognitive impairment (MCI) stage — before dementia — it would collectively save $7 trillion to $7.9 trillion in health and long-term care costs, the association estimates.
The good news is that more young researchers are becoming interested in the disease as more research dollars become available, said Wallace, a former journalist who is a professor at the Walter Cronkite School of Journalism and Mass Communication at Arizona State University,
However, as our ability to identify biomarkers and genetic changes improves, we can’t forget about the people, according to Anna Burke, M.D., director of neuropsychiatry at Banner Neurological Institute in Phoenix. “They’re suffering, and families are suffering.”
As people live longer, the likelihood of dementia increases from 10 percent to 15 percent by age 65 to 50 percent by age 85. “The challenge is in caring for them,” said Burke, noting that care can be pretty abysmal in the primary care setting, she said. About one-third of patients end up in the ED or hospitalized because of issues such as forgetting to take their medications, falls, agitation or other symptoms.
“We need to make the health system more dementia-capable, create more resources for primary care providers and create cost-effective diagnostic techniques,” she said.
Additionally, it is important to increase patient access and referrals to clinical trials, as well as link them to vital community-based services and supports. “Often after a diagnosis, the family and patient are left to scour the Internet on their own,” she said.
Wallace encouraged journalists to help increase awareness about the issue and bring it out of the shadows. “There is still a stigma surrounding the disease,” she said. “People don’t see the face of Alzheimer’s until it happens to their family.” It’s an issue we as a country need to talk about and demand more money for research funding. “That’s where journalists can make a difference.”
When reporting on the issue, Wallace suggests that journalists help make the subject come alive through personal stories, including those of caregivers. She also suggested that reporters “be straight” about the research. “There is still much we don’t know, and it is important not to give false hope.”
It’s also important that reporters cover covering the political battles, such as research funding, appropriations for home and community supports and health system approaches towards diagnosis and treatment. “And importantly, expose and dispel myths,” she said.
There’s no magic cure or prevention. At least not yet. Here are some questions for journalists to explore in their coverage:
- What is the incidence of the disease in your community and what are health officials doing to address it?
- Are any innovative programs happening in your state or community?
- Are local research institutions or hospitals conducting trials? You can check this org page or this NIH resource to find out. Talk to researchers and family members about their experiences and hopes.
- The 2018 Alzheimer’s Disease Facts and Figures report contains data on the impact of this disease in every state.
- This AHCJ tip sheet can help when covering Alzheimer’s and other dementias.
- This AHCJ blog post explores the potential link between brain glucose and Alzheimer’s.
- This AHCJ post provides ideas on how to report about Alzheimer’s drug trials without giving false hope.
- Banner Health’s Alzheimer’s Prevention Registry connects those interested in study participation with available trials.
- The NIH Brain Health Registry encourages people to sign up and help them seek a cure for Alzheimer’s and other brain disorders such as Parkinson’s and PTSD.