If you have a loved one with dementia, my first suggestion would be to find the very best doctors possible. My second piece of advice would be to go to the Alzheimer's Reading Room. It's a free blog that focuses on Alzheimer's disease and the art of Alzheimer's caregiving and to which I am also a contributor. Its goal is to educate, sometimes entertain, and always empower Alzheimer's caregivers, their families and the entire Alzheimer's community. It's the nation's largest blog on Alzheimer's and the number one source of news about Alzheimer's disease and caregiving.
This site offers advice on issues that are important to Alzheimer's caregivers. It provides specific insight and solutions to problems they face each day -- issues such as wandering, challenging behaviors, showering, bathroom needs, driving, caregiver loneliness, treatments, medications, hospice and so many other problems that arise when caring for someone with Alzheimer's or other dementias.
The Alzheimer's Reading Room has more than 3,711 articles in its database -- many written by everyday caregivers. Others are provided by some of the world's top scientists, clinicians, doctors, nurses and other professionals in the field who share their advice, knowledge and expertise.
The site was established by Bob DeMarco, a former Wall Street professional from Delray Beach, Florida, who was the full-time caregiver to his mother, Dotty, for eight years. He started the site to keep track of the thousands of articles and numerous books he was reading about Alzheimer's disease to help him understand how to care for his mother. DeMarco himself also contributes a prodigious number of articles to the site, based on both his personal experience caring for Dotty and his own research.
Bob DeMarco, Founder, Alzheimer's Reading Room
DeMarco describes his experience starting the site:
Soon after I started the blog, I began to receive emails from Alzheimer's caregivers from all over the world. At first an email here and there. Then thousands began pouring in. I soon realized that these caregivers were often thrust into their roles with little or no experience or training. As a result, they are often overwhelmed and suffer from feelings of helplessness. At its core, the site is about providing advice and insight to help remedy that problem.
As DeMarco gained experience caring for Dotty, he decided to start writing more about the success he was having in fighting the disease. "I learned that the more I let her do, the more she could do," he says. "I learned that there were solutions to some of the problems posed by the disease."
Bob's mother, Dotty
This popular site, established in 2008, has more than 11,600 subscribers and over 62,500 unique visitors each month. It encourages every single reader to comment and share his or her experiences. Readers learn from each other. But most importantly they learn that they are not alone.
People who sign up automatically receive links in their email in-boxes to all of articles published on the site. On average, DeMarco posts two to three articles per day. These articles receive numerous comments, sometimes up to 50 or more each, from the site's large, loyal readership. In addition, articles from the site have been syndicated on Reuters, Fox News, The Wall Street Journal, Time Warner, the Chicago Sun Times, the Houston Chronicle and Livestrong -- just to name a few.
DeMarco says the most rewarding aspect of running the Alzheimer's Reading Room is when people email him that they've had a breakthrough in their caregiving attitudes and skills as a result of reading articles posted there. He also says that he received an outpouring of support whenever Dotty was ill. "I received hundreds of emails from caring people who were concerned about her health," he says.
On a sad note, Dotty, who was DeMarco's inspiration to start the site, passed away May 25 at the age of 95. She will be sorely missed by the site's entire readership, which had come to know her intimately from DeMarco's frequent articles about her, her antics, and his solutions to problems she presented.
The Alzheimer's Reading Room shows what one person with a mission to help others can accomplish through research, personal experience, drive and dedication. DeMarco is a remarkable man who deserves the highest praise from every person who is loving and caring for a person with Alzheimer's disease.
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