Warren Walker lives in Spokane. He was diagnosed with Alzheimer’s disease, a fatal form of dementia, in 2017.
He has participated in research on Alzheimer’s, for which today there is no cure or way to prevent or slow the disease. Warren explains his choice to participate in studies, stating simply, “I can guarantee no cure without research.”
In the same year Warren was diagnosed, Washington state had the ninth highest death rate from Alzheimer’s. Nationwide, 1 in 3 elderly Americans dies with some form of dementia.
Today, across Washington there are an estimated 110,000 people 65 and older with Alzheimer’s, a number expected to increase by more than 25% by 2025. Across the country, the number of people with Alzheimer’s is expected to triple by 2050.
There are efforts underway in Eastern Washington to expand resources for this growing population and conduct research into the causes and a possible cure.
Community led efforts are essential. Aging & Long Term Care of Eastern Washington and other community partners are currently preparing their 2020-2023 Area Plan. One of the aims of the draft plan is to have Spokane County become the first “Dementia Friendly Community” in the state, to provide more resources, information and services for the increasing number of residents with Alzheimer’s and other dementias. This summer they held a series of public events to give people across the region an opportunity to provide feedback on the plan.
A significant increase in medical research is also necessary if we’re going to change the future course of this disease. As Joel Loiacono, head of the Spokane office of the Washington Chapter of the Alzheimer’s Association, puts it, “We need more shots on goal.” The goal being to end Alzheimer’s.
One of the key barriers to more research, not surprisingly, is money. What may be surprising is that in such a polarized political environment, increasing research funding is an area where there is strong bipartisan support in Congress.
Representative Cathy McMorris Rodgers, as well as Senators Patty Murray and Maria Cantwell, have been important supporters of this, voting for a four-fold increase in federal research spending over the past five years. In a meeting with constituents in downtown Spokane this August, McMorris Rodgers was emphatic when it comes to federal research funding, telling us, “We need more.”
That Congress is able to agree to such a significant investment is testament to this growing threat.
More money, however, is not enough. Critical to finding a cure is being able to test the research through clinical trials. Yet, researchers are struggling to find trial participants – both people with Alzheimer’s, as well as healthy individuals.
Studies on dementia, including protection of brain health, are being conducted at Washington State University’s Neuropsychology and Aging Laboratory in Pullman. WSU professor Maureen Schmitter-Edgecombe told me, “We spend A LOT of time reaching out to recruit participants. Recruitment is a continuous, time consuming, and sometimes expensive process.”
Loiacono of the Alzheimer’s Association traveled to the organization’s international conference held this July in Los Angeles, the largest conference of its kind focusing on dementia research. A key part of the discussion was the need for research participants.
“In the face of an Alzheimer’s diagnosis, people want to feel like they can do something about it, and participating in clinical trials is one of the most rewarding things people can do.” But learning about trials, Loiacono adds, is like looking into “a black hole.”
Recently, the Alzheimer’s Association’s created the TrialMatch program, through which 250 studies are recruiting participants. This is a way to learn about trials in our region, whether you may qualify, and how to participate. Loiacono describes it as a “dating service” – matching up people with clinical trials for which they are a good fit.
This summer, the Spokane office of the Alzheimer’s Association is launching a new project to reach out to physicians and medical care teams, so that they and their patients can easily find out about clinical trials through TrialMatch.
Much like cancer, Alzheimer’s and other dementias will touch nearly every family in America. We must advance a comprehensive approach – at the local, state and national levels – to take on this challenge. Our elected officials have a critical role to play in funding research, and improving access to research trials, treatment and care. It’s more important than ever for them to hear from us about this growing need.
And, it’s important for each of us to get involved. As Warren explains, “For me it is probably too late – for you it is not. Volunteer in whatever capacity you have – to help.”
Mari Margil is a volunteer with the Alzheimer’s Association in Spokane.
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