Did you know that Alzheimer's disease can strike someone as early as their thirties?
The notorious, memory-robbing ailment is often associated with seniors, but people who are middle-aged and even young adults are not entirely immune to its affects.
According to a 2009 study conducted by the National Alliance for Caregiving and the American Association for Retired Persons (AARP), the average family caregiver is a 49-year-old woman. This means that caregivers who are looking after their elderly relatives may, themselves also be at risk for Alzheimer's disease.
But it's a small risk.
Jennifer Fitzpatrick, MSW, LCSW, an expert on aging and a consultant for the Alzheimer's Association, says that being diagnosed with Alzheimer's before age 65 does happen, but it's rare—only about 5 percent of people who suffer from the disease have what is called the "early-onset" form.
Signs and symptoms
Early-onset Alzheimer's disease shares many of its primary characteristics with Alzheimer's disease and other types of dementia.
Fitzpatrick says that caregivers who suspect that they, or a loved one, may have the disease should be on the lookout for things like consistent short-term memory loss, confusion, personality changes, poor judgment, or getting lost in familiar places.
Examples of specific symptoms include: a person who believes that they are a teenager, when in reality they are an adult, someone who cannot recall a conversation that they had a few minutes ago, or someone who forgets that they need to take their clothes off to take a shower.
While it's good to be aware of these symptoms, Fitzpatrick mentions that caregivers under 65 should be careful not to become alarmist about their risk of developing Alzheimer's disease. "It's important to understand what normal aging is. Tip-of-the-tongue moments and forgetting your keys every once in a while is normal. This disease is in the media so much that when people have normal aging symptoms, they worry—most of the time for no reason," she says.
Fitzpatrick also points out that dementia and Alzheimer's are not the same thing. Alzheimer's is a specific type of dementia. Dementia itself can be caused by many different things, from vitamin deficiencies, to urinary tract infections, to mini-strokes.
Age makes all the difference
The chief distinguisher of early-onset Alzheimer's is that it begins to affect people in their forties, fifties, and early sixties.
This is what makes the early-onset form of the disease so potentially devastating.
Fitzpatrick says that people who develop Alzheimer's during their middle-age years can find themselves (and their families) facing significant financial stress.
She points out that if the disease forces someone to retire prematurely, they not only lose out on potential wages during their prime earning years, but they also won't be finished contributing to their 401k, pension program, or other retirement plan. This means that they may have a hard time paying for future care.
Also, depending on how early the symptoms hit, an adult may not be finished raising their children, or taking care of their elderly parents. This situation can be rife with both financial and emotional strain as the grandparent-parent-child dynamic becomes disrupted.
According to Juliet Scott-Campbell, a nurse care manager for the Visiting Nurse Service of New York (VNSNY) CHOICE program, people who are the primary breadwinners for their household may also develop serious self-esteem and depression issues if Alzheimer's prematurely strips them of their role as a provider or caregiver.
Handling an early-onset diagnosis can be tricky for a caregiver who is responsible to looking after an elderly loved one.
Getting a definitive diagnosis as soon as possible is vital. The sooner a family knows about an early-onset diagnosis, the sooner they can mobilize and begin to plan for the future.
One of the most important tasks to do post-diagnosis is to make sure that the person the caregiver was taking care of has someone new to look after their health and well-being.
It's also critical to get all relevant legal documents (Will and Living Trust, Power of Attorney, financial provisions for children who are still minors) in order for both the person suffering from early-onset, and the person they were caring for. Fitzpatrick recommends having discussions about where the person diagnosed with early-onset Alzheimer's would prefer to live if caring for them gets to be too much for family members.
Early-onset Alzheimer's can be particularly frustrating because it can begin to affect a person who is otherwise healthy. Many people, when they are first told that they have early-onset Alzheimer's, remain in denial, refusing to acknowledge the disease and its consequences.