I was named one of the Top 10 Alzheimer’s online influencers by Sharecare and Dr. Oz and I am passionate about advocating and educating about Alzheimer’s disease. I recently attended an educational event sponsored by Banner Alzheimer’s Institute (BAI), a non-profit organization that has developed the Alzheimer’s Prevention Initiative (API) and Registry. As a paid sponsor for this effort, I want to share some information about Alzheimer’s disease and how you can join the effort this November – which is National Family Caregiving Month and National Alzheimer’s Awareness Month – to make a difference.
Do You Know?
Today, more than 5 million Americans have been diagnosed with Alzheimer’s – a number that will triple by 2050. In fact, every 68 seconds someone new is diagnosed with Alzheimer’s disease. And this diagnosis is not just for the person affected. It is a diagnosis for the entire family, especially the 15 million Americans – 1 in every 10 U.S. adults – who care for a loved one with Alzheimer’s or dementia.
The myth is that if you have not experienced Alzheimer’s in your family health history, you don’t need to worry about being affected. Yet our own longevity is working against us. As we live longer – 1 in 50 baby boomer age women will live to age 100 – and experience medical breakthroughs and new technology, we can diagnose this disease earlier where steps can be taken by families to address the challenges Alzheimer’s creates.
According to Jessica Langbaum, PhD., principal scientist at BAI and associate director of API, “Family history can increase the risk of developing Alzheimer’s disease. However, familial Alzheimer’s disease is rare – less than 1 percent of new diagnoses are caused by genetic mutation. If you do not have a family history of this disease, it does not mean you won’t get Alzheimer’s.”
For families the diagnosis can be devastating – emotionally and financially. The cost of in-home care for someone with Alzheimer’s averages $76,000 a year and special memory care facilities – assisted living and other senior living homes where staff is specially trained on dementia issues – are growing in numbers but can typically cost more than $100,000 annually and many families experience wait lists for residents. We often believe long term care insurance benefits or Medicare will cover all these costs but that is not always the case and the families are left with financial challenges that can be overwhelming.
Another myth is that we don’t need to worry about developing Alzheimer’s until we are well into our golden years. While the statistics show that one in every two adults over age 85 will develop dementia, five percent of those with Alzheimer’s were diagnosed as “early on-set” – people in their late 30s, 40s, 50s and 60s.
In fact, just this year, I have interviewed two people who were diagnosed at age 51 and 52 and I met a woman at a conference who was diagnosed at age 38. The silver lining is that these individuals, along with their families, have time to plan ahead for the impact the disease will have on their lives – an advantage many facing the disease do not have.
According to the Alzheimer’s Association, about half of people with Alzheimer’s disease are undiagnosed. And many Americans do not know the difference between normal memory loss that comes with aging or stress versus concerns over dementia. The Alzheimer’s Association has developed the 10 Warning Signs of the disease and explains the difference. For instance, forgetting where you put your keys is normal memory loss; putting your keys in the freezer is not. Not remembering the names of all 10 of your grandchildren is normal aging memory loss; not remembering names for common daily items such the word for “toothbrush” is not.
The Call To Action – Join the Registry to Stop the Epidemic
This November while we gather with family and friends for Thanksgiving dinners, stop and look around the table. More than likely, someone at the table will develop dementia in their lifetime.
Alzheimer’s is the 6th leading cause of death and the only disease on the Top 10 list of killers – along with heart disease, cancer and others – which cannot be prevented, slowed or cured.
- Updates on research, clinical trials, news, brain health information
- Become eligible for potential study participants for prevention research. Many clinical trials are not just about people who are ill or diagnosed with the disease. Researchers need 10-20 times the participants to screen for participation and API’s research focuses on people without symptoms. Many research and studies are abandoned because they do not meet their recruitment goals.
- Some of the research participants simply fill out online surveys which take a few minutes. Others can elect to join in-person studies. It is your choice – there is no obligation to participate in any of the studies.
- The only information you provide is your zip code and answer whether you have a family history of Alzheimer’s disease. All information is kept strictly private and confidential and not shared. By joining the registry, you simply say you want to receive information about new research and studies. You will be asked if you want to join any future studies and can decide at that time if you are interested.
I joined the Alzheimer’s Prevention Registry to help stop this epidemic. I am asking you to share the link and information with your family and friends – via Facebook, email or otherwise – and help us achieve the goal of registering 250,000 people. BAI is a non-profit organization dedicated to research, treatment and the creation of new standards of care for patients and families. They also bring together international institutions on scientific collaborations. You can follow their efforts on Twitter @AlzRegistry using the hashtag #endAlznow.
Here is what a couple of other registrants have said about why you should join:
“I joined the Registry in honor of my husband, who was diagnosed with early-onset Alzheimer’s at age 50. I can’t bear the thought of one of my sons developing this disease also,” says Dawn Revere.
“Being a caregiver for my mom really taught me the true meaning of love. Taking care of her and being her advocate and daughter at the same time really showed me what love is all about. I joined the Registry to fight against a disease that robbed my mom of everything,” shares Cynthia Manly.
Have a wonderful and safe Thanksgiving.
About Sherri Snelling
Sherri Snelling is CEO of the Caregiving Club and author of of A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, which includes several celebrity stories of caregivers of those with dementia as well as Alzheimer’s information and resources. She was named #4 to the Top 10 list of Alzheimer’s influencers online by Sharecare and Dr. Oz and is a blogger and writer for the Alzheimer’s Association as well as Huffington Post, Forbes, PBS Next Avenue and USA Today.