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Tuesday, March 26, 2013

Teri Shirk: Stats show we must do more to fight Alzheimers, support those who have it

We often hear friends or colleagues talking about neighbors, parents or grandparents who are growing a little forgetful. But, just as likely, we listen to stories about “old so-and-so,” who was as sharp as a tack until the day he died.

The truth is that the memory-wracking disease of Alzheimer’s is not a normal part of the aging process. We shouldn’t expect a lifetime worth of recollections and family connections to gradually disappear as we age.

Yet a report issued in March by the Alzheimer’s Association found that one in three seniors in America has Alzheimer’s or another dementia when they die. That doesn’t mean a third of deaths are caused by Alzheimer’s, but it most certainly means that those loved ones lost a huge part of what made them who they were before they passed.

What’s more, according to 2013 Alzheimer’s Disease Facts & Figures, while deaths caused by other major diseases are declining in America, deaths attributed to Alzheimer’s continue to rise – up 68 percent nationwide from 2000-2010. In Kentucky, they’re rising faster than the national average – 73 percent. Yet the medications available today treat only the symptoms of Alzheimer’s, which is the only leading cause of death in America without a way to prevent, cure or even slow its progression.

In addition to the memory loss, severed human connections and personality changes faced by families dealing with Alzheimer’s, there are enormous – almost unthinkable – expenses associated with the disease. And not all those costs are borne by the health care system and Medicare or Medicaid. Kentuckians provided an estimated $3.7 million in unpaid care to loved ones with Alzheimer’s in 2012, and had to cover an estimated $152 million in additional health care costs of their own due to the physical and emotional toll of caregiving.

Many of those who take care of Alzheimer’s patients do so from a distance. 2013 Facts & Figures found that nearly 15 percent of caregivers for people with Alzheimer’s or another dementia live an hour or more away. And their out-of-pocket costs are nearly twice as high as those of local caregivers.

So, if Alzheimer’s isn’t a normal part of aging, yet both incidences of the disease and associated financial and personal costs are skyrocketing, what does that mean?

From my perspective – and, I suspect, from the perspective of every one of the 80,000 Kentuckians with Alzheimer’s – it means we have to do more to find, and fight, the underlying causes of Alzheimer’s, and to support those dealing with the disease.

We’ve made some progress in recent years. Congress passed the National Alzheimer’s Project Act, a comprehensive plan for attacking the disease and creating a basis for new resources. Kentucky advocates were also successful in getting 10 questions on cognitive impairment added to a health state survey, so we’ll have the data we need to help reduce impact of this devastating disease in the Commonwealth. And there is progress every year on promising research.

In addition to funneling funds to the national Alzheimer’s Association for its research initiative, the Greater Kentucky and Southern Indiana Chapter uses its $2 million annual budget to help fund programs for Kentucky patients and their families, including support groups, educational programs, a 24-hour Helpline (800-272-3900), the MedicAlert/Safe Return Program and online resources such as ALZConnected™ and ALZNavigator™.

We also help people with Alzheimer’s find clinical trials through our free service, Alzheimer’s Association TrialMatch®.

Virtually every dollar of these funds is donated by generous supporters of the Alzheimer’s Association, here in Kentucky and across the nation. Most of our donors have a personal connection to the disease, and want their children and grandchildren to grow up in a world without Alzheimer’s. That is the Alzheimer’s Association’s goal – a world where we hear about Aunt Mary forgetting her keys instead of her name.

As the local chapter continues to hold fundraising events throughout the Commonwealth, we hope you’ll continue to be generous in supporting that goal.

Teri Shirk is executive director of the Alzheimer’s Association of Greater Kentucky and Southern Indiana,www.alz.org/kyin.