There are 60,000 Kentuckians with Alzheimer's disease and 270,000 caregivers in the Commonwealth. It's a good number of caregivers, says Kimberly Fondaw, Alzheimer's Ambassador for the First District in western Kentucky, but there needs to be more education to the public and funding for research before it bankrupts the system. This year alone, we've paid out $153 billion dollars in Medicare and Medicaid to those with Alzheimer's and the numbers are growing, she says. Tracy Ross speaks with Fondaw on Sounds Good about upcoming awareness events in Hopkinsville and Paducah.
Kimberly Fondaw found her calling to becoming an Alzheimer's Ambassador when she lost her mother to the disease. She started as a long distance caregiver and eventually moved her parents to Kentucky to help her dad take care of her mother. She made a promise that she'd help fight not only for her but for the larger issue. Alzheimer's is a cruel and slow disease, she says. It's also terminal - the sixth leading cause of death and there is no cure, no slowing it down and no prevention. Women are more likely than men to develop the disease after 65 and are more likely to be diagnosed with Alzheimer's than breast cancer.
It's also very expensive. "It's probably going to bankrupt our Medicare/Medicaid system," Fondaw says. With a price of $153 billion this year alone in Medicare and Medicaid. And yet, research is underfunded. There are no new drugs available that were available 11 years ago. Something needs to be done to encourage more funding for research, she says. One of the biggest fundraisers of the Alzheimer's Association is the Walk to End Alzheimer's. There is one taking place in Hopkinsville on September 26 and one in Paducah on October 17.
A bill has been presented to Congress called the "Hope for Alzheimer's Act," co-sponsored by 1st District Congressman Ed Whitfield, which allows doctors to share information. Many old people have more than one doctor, Fondaw says, and one doesn't always know what the other is doing. This act would open dialog so that doctors can work together. It also gives a plan to families to learn what is expected in managing the disease and resources available.
For those interested in getting involved, Fondaw recommends going to alz.org and clicking on the map to find a local chapter. Nearby chapters include Paducah, Owensboro, Hopkinsville, Evansville and Clarksville. The organization provides counseling, education and support groups. "I would have been lost without the Association when dealing with my mother because I didn't know what to do and how to go about it and the association has a vast amount of information," she says.
Some things she'd like to see change include more education for the public, namely the misconception that it's an old person's disease. Nearly 200,000 people suffer from early onset Alzheimer's (people under the age of 65). Second, she'd like to see more funding for research. With cancer and heart disease, a doctor can generally provide a roadmap for what's to come, but with Alzheimer's it's hard for the caregiver and family to wrap their head around what to do, she says. It takes 24 hour caregiving, families need to make sure legal matters are in order, if your spouse is larger than you lifting can be difficult.
Some early signs for Alzheimer's include loss that disrupts daily life. We all forget things, but when something becomes disruptive where it'd otherwise be a part of your daily routine that's a sign. Another is challenges in planning of solving problems - Fondaw says her mother was a librarian and read all the time, but found she couldn't get past the first page in a book because her concentration was gone. Trouble completing familiar tasks at home, work or leisure is another sign. Also, confusing time and place, like seasons, times and days of the week.