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Originally published Friday, March 14, 2014 at 4:58 PM

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Guest: The others affected by Alzheimer’s — caregivers

The burden of caregiving for people with Alzheimer’s disease exacts an emotional toll on family members and friends alike, writes guest columnist Collin Tong.


Special to The Times

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IN our aging society, many of us will soon face the daunting task of caring for a family member or loved one with a debilitating illness. Whether it involves caring for an ailing parent, sibling or life partner, the burden of caregiving exacts an emotional toll on family members and friends alike.

Alzheimer’s caregivers face especially tough challenges. Not the least of those are the stress and grief caused by ambiguous loss.

The statistics are sobering. Last year, an estimated 5 million Americans had Alzheimer’s disease, and the numbers are soaring. Three years ago, my late wife of 40 years succumbed to Alzheimer’s disease after a 12-year struggle.

Linda was only 51 when she first began showing symptoms of short-term memory loss. We were on a walking tour in the Provence region in France when I noticed that she had forgotten to bring along some essential items. Following the death of her sister a month later, her memory problems grew more pronounced.

In 2005, her neurologist gave us the dreaded diagnosis: “I’m sorry to tell you this, but Linda has early-onset Alzheimer’s disease.”

Linda was among the more than half-million Americans under 65 who develop younger-onset Alzheimer’s. In Washington state, nearly 150,000 people are living with Alzheimer’s or other dementias, and they are being looked after by more than 350,000 caregivers — most of them unpaid family members.

Many find help and hope, as I did, from the Alzheimer’s Association, the world’s leading global voluntary health organization in Alzheimer’s care and support, and the largest nonprofit funder of Alzheimer’s research.

Not surprisingly, a recent study states that individuals who care for those with memory loss face high levels of emotional stress. More than one-third report symptoms of depression. Alzheimer’s caregivers had $9.1 billion in additional health-care costs of their own in 2012.

In January, I published “Into the Storm: Journeys with Alzheimer’s,” an anthology of stories by 23 writers, journalists, social workers and health practitioners from across the United States who share their experiences caring for loved ones. My hope is that this book will provide a road map for the millions of American families facing this tragedy.

Sadly, stories such as mine are becoming a common fact of life. Alzheimer’s disease is now the third leading cause of death in Washington state. More sobering is the fact that while deaths from heart disease, breast cancer and stroke decreased from 2000 to 2010, Alzheimer’s-related deaths have risen by almost 68 percent.

Since President Obama signed the National Alzheimer’s Project Act into law in 2011, the search for a cure to this disease remains elusive, but there are hopeful signs. The National Alzheimer’s Plan, introduced in 2012, is moving toward full implementation with the ambitious goal of preventing and effectively treating Alzheimer’s by 2025.

This year, Congress appropriated more than $120 million in additional funding for Alzheimer’s research and caregiver support, but more federal dollars are needed to advance research and ultimately defeat the scourge of Alzheimer’s.

Under the leadership of state Sen. Karen Keiser, D-Kent, Reps. Steve Tharinger, D-Dungeness, and Norm Johnson, R-Yakima, the Legislature just passed a bill to develop an Alzheimer’s disease plan for Washington state.

Such a plan will leverage Washington’s historic commitment to innovative health and senior care to address the full range of Alzheimer’s issues and outline the steps the state must take to sustain and improve its services for people living with Alzheimer’s and their families.

Alzheimer’s disease has become a national public-health epidemic whose long-term impact we ignore only at our own peril. As caregivers, we share our stories in order that our voices might advance public understanding about this disease and hasten the day when medical science will find a cure.

Collin Tong is a correspondent for University Outlook magazine and a Seattle-based stringer for The New York Times.



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