June is Alzheimer's & Brain Awareness Month. June 21, the summer solstice, has been designated by the Alzheimer's Association as "The Longest Day." The day hallmarks a day of love for those affected by Alzheimer's disease. The day gives those affected by the disease, whether living with it or affected as a loved one, the opportunity to team up and raise awareness and funds to advance research toward the first survivor of Alzheimer's.

You see, there are no survivors of Alzheimer's and related dementias. Alzheimer's has no cure and no treatment to stop, reverse or even slow the process. Currently there are 5 million people living with Alzheimer's disease. The estimates are that by 2050 that number could jump to 16 million. It is considered a crisis, and with good reason.


Sadly, those numbers include a higher number of people being affected by "Younger-Onset Alzheimer's disease," defined as affecting a person under 65. Younger-Onset is also referred to as "Early Onset" and can be confused with "Early Stage" which, more accurately relates to the stage in the process of dementia not the age. An affected person can be Early Onset, Early Stage and another person may be Early Stage with a dementia diagnosed after age 65.

As I walked into a memory care community recently, I saw a younger couple who were perhaps in their 50s holding hands walking toward me. I thought they must have been visiting a resident. As I approached them, I recognized the blank look in the man's eyes and the sadness in his wife. I later spoke with her as I saw her crying in the hallway. She had made the difficult, gut-wrenching decision to place him in the care of a community where he would be safe and cared for, as she no longer could provide what he needed.

A diagnosis of Young-Onset Alzheimer's/Dementia is like being in a club that no one wants to join for spouses affected. A daughter recently told me "being a caregiver and watching this is the worst job I've ever had and I can't quit." The numbers of younger people affected by dementia are growing. Unfortunately, because no one is expecting a diagnosis of Alzheimer's disease or a dementia affecting the younger population, the signs often get missed until the writing is on the wall.

Young-onset victims are most often still working, which is commonly where the problem is identified. It may take several job firings to see that there is a problem. Personality changes, memory loss, unexplained behaviors, anxiety, and depression are just a few of the signs that may be noticed by family, friends and co-workers. It may take months, or even years, for families to seek professional advice. Savings accounts that are earmarked for retirement or college expenses for their children are commonly drained during the long process of a diagnosis.

Denial, along with the subtle changes in the beginning, commonly delays diagnosis. Changes may be attributed to stress, depression, anxiety, or simply apathy or loss of interest. Rarely does anyone, even medical professionals, suspect Alzheimer's disease or another cause of dementia.

The Alzheimer's Association has a comprehensive website which includes information specifically related to Younger-Onset Alzheimer's. In addition to providing a vast resource of information, activities and upcoming events are posted. Suggestions for participating in The Longest Day activities are posted on the website. "A Night at Camden Yards" will be held on June 30, when the Baltimore Orioles play against the Tampa Bay Rays, and they will be recognizing Alzheimer's & Brain Awareness Month and The Longest Day. A 59-year-old gentleman living with Young-Onset dementia will throw out the first pitch.

Visit www.alz.org for more information on Alzheimer's disease, how to participate in upcoming events and what you can do to become involved in raising awareness.

Jill Rosner is a registered nurse, certified geriatric care manager and owner of Rosner Healthcare Navigation. She provides patient advocacy and care management services to clients with health and aging issues. Contact her at JillRosnerRN@aol.com.