This is the first of a two-part article from The Alzheimer’s Association Colorado Chapter.
A man in his early 50s experiences personality changes that baffle his family and land him in jail when police don’t know how to deal with him…
A 58-year-old business executive gets lost on the way home from work – a route he’s driven for more than 10 years…
Severe memory lapses lead a rising business manager under age 50 to lose career momentum and experience several demotions…
A woman diagnosed with Younger Onset Alzheimer’s disease at age 50 has to endure comments that she’s “being silly” when she tries to explain her symptoms to coworkers…
The majority of people affected by Alzheimer’s disease fit into a certain stereotype: senior citizens well over age 65, primarily women. For many people, this “senility” is not surprising. It’s even expected. But when the afflicted person is younger – in the prime of life – people are confused. Family members may be upset or angry. Doctors often are at a loss for a diagnosis.
How common is younger-onset Alzheimer’s?
Age is the primary risk factor for developing Alzheimer’s disease. Of the nearly six million people in the United States living with Alzheimer’s dementia, an estimated 200,000 are under the age of 65, equal to about 0.0007 percent of people in the U.S. of that age range. The risk rises progressively as we age: an estimated 3 percent of people ages 65 to 74 have the disease; 17 percent of those 75 to 84, and 32 percent of those age 85 or older.
For the individual in his or her late 60s or early 70s, the diagnosis is tragic. Their hopes of enjoying the retirement they’ve saved all their life for are shattered. For people in their later 70s or 80s or beyond, there is the physical challenge that caregiving places on older spouses and partners, or on children who have lives of their own.
But for the person living with Alzheimer’s dementia in his or her 40s or 50s, retirement plans aren’t even fully formed. The children may not yet be out of school. There is still the fear of losing a much-needed job…of leaving a beloved spouse alone at a much-too young age…
The challenge of caregiving
“Just serving as a caregiver for a parent or loved one with Alzheimer’s is a very physically and emotionally demanding role,” said Ann Carter, director of the Southern Colorado regional office of Alzheimer’s Association based in Pueblo. “When a spouse in his or her early 60s or 50s or even 40s is diagnosed, the burden on caregivers increases dramatically not only because of the tragedy of the younger diagnosis, but because the individual diagnosed was being counted on as a caregiver, wage earner and life partner.”
Of all caregivers surveyed by the Alzheimer’s Association, nearly 75 percent report feeling somewhat or very concerned about maintaining their own health. In addition, over one in three dementia caregivers say their health has gotten worse due to their care responsibilities.
“These statistics apply to any caregiver,” said Carter. “When the caregiver and their loved one are dealing with a case of younger onset Alzheimer’s, the risks of depression and physical exhaustion are amplified, and caregivers must remember to put a premium on their own health and well-being.”
For the 200,000 or so people in their 40s, 50s or early 60s – still in their prime employment years – facing symptoms of Alzheimer’s, the future can be quite frightening. Will their declining mental capacity enable them to keep working? Will they be able to remain physically safe? Can they continue to provide for their families? Will they get to enjoy the fruit of all of their labors?
“Even if they don’t have an Alzheimer’s diagnosis, people living with the symptoms of dementia are uncertain whether they will get fired from their jobs if they reveal the changes they are experiencing,” said Carter. “They want to know, ‘will I still be employable?’”
The impact on working spouses
Among Alzheimer’s and dementia caregivers who are employed full or part-time, 57 percent said they had to go in late, leave early or take time off because of their caregiving responsibilities. In addition, 18 percent had to go from working full-time to part-time, 16 percent had to take a leave of absence, and 8 percent turned down a promotion due to the burden of caregiving.
Sometimes continuing to work isn’t even an option. About 16 percent of caregivers reported quitting work entirely either to become a caregiver in the first place or because their caregiving duties became too burdensome.
The risk of misdiagnosis
Receiving a diagnosis for Alzheimer’s and other forms of dementia can be challenging even when the individual is older – only about one-half of persons with Alzheimer’s in the United States receive a diagnosis. But when the individual is younger, physicians often will look to other causes, such as depression or various physical or mental health issues, before testing for Alzheimer’s.
“All too frequently, doctors, first responders and others who encounter younger individuals with Alzheimer’s will not believe that the personality or memory issues plaguing these people could be caused by dementia,” said Carter. “It can take a long time to get a proper diagnosis because some doctors, even neurologists, won’t perform Alzheimer’s testing on someone younger.”
The Alzheimer’s Association Colorado Chapter is the premier source of information and support for the more than 73,000 Coloradans with Alzheimer’s disease, their families and caregivers. Through its statewide network of offices, the Alzheimer’s Association offers education, counseling, support groups and a 24-hour Helpline at no charge to families. In addition, contributions help fund advancements in research to prevent, treat and eventually conquer this disease. The Alzheimer’s Association advocates for those living with Alzheimer’s and their families on related legislative issues, and with health and long-term care providers. For information call the Alzheimer’s Association 24/7 bilingual Helpline at 800-272-3900, or visit www.alz.org/co.