Many think of Alzheimer's and other forms of dementia only affect the elderly. However, there are those younger than 65 - many at the height of their careers and relationships - who receive a younger-onset diagnosis.
Because most with younger-onset Alzheimer's patients are in their 40s and 50s, early symptoms can be incorrectly attributed to stress or typical age-related memory loss. These typical changes in memory can include: making a bad decision once in a while, missing a monthly bill payment, forgetting which day it is or which word to use, and losing things from time to time.
Cases that may need a closer look include: poor judgment and decision making; inability to manage a budget; losing track of the date or the season; difficulty having a conversation; or misplacing things and being unable to retrace steps to find them.
Misdiagnosis is common for those with younger onset, with an average of 3.4 years before a correct one, according to the Alzheimer's Association[1] . About 71 percent of care partners report diagnostic issues. Most doctors do not tend to look for the disease in younger patients.
Sarah Taylor[2] is the Education Manager of the Alzheimer's Association, Houston & Southeast Texas Chapter. Her father, Ben, received his diagnosis at 58, three years after his first symptoms began to appear.
Early signs for Ben included getting lost while driving, having trouble with his vocabulary and getting easily confused. His doctor initially thought his memory problems stemmed from a vitamin deficiency.
As the disease progressed, Ben began to confuse names, and he asked questions repeatedly even though they had been answered. He began to have trouble using the phone and the TV remote control. And Ben, an international banker for 40 years, couldn't handle money anymore.
"My father is very healthy and never went to the doctor," Taylor said."Due to his age, they just didn't think it could be Alzheimer's."
Don Baird, a technology executive, had plans to travel the world with wife Cheryl after early retirement in 2008. Before their plans could take place, Baird began to notice things were "not quite right" with Cheryl.
She couldn't find the correct words, and she forgot people's names. In group settings, she had trouble following conversations. Friends began to notice, some suggesting her behavior may have been caused by a mini-stroke.
"I was in denial and didn't do anything about it," Baird said.
It took some urging from his son, then in his late 30s, for Baird to take Cheryl to a neurologist. Tests revealed Cheryl had younger-onset Alzheimer's. She was 57.
"It absolutely blew me away," Baird said. "I didn't really know exactly what to do."
Make a plan right away
Although community resources were available, Baird took his time before reaching out for support. Many caregivers and loved ones say they cope with the news by "not thinking about the future" or "doing their best not to think about the future." Many of those diagnosed feel shame and wish not to tell anyone.
However, it is important to get help and make a plan immediately as younger-onset Alzheimer's usually progresses faster than other forms of the disease.
Make time to prepare family and friends, settle things at the workplace, and get legal and financial affairs - such as powers of attorney and wills - in order.
Those who continue to work can expect misunderstandings with employers or co-workers. Their productivity could decline, as well as their ability to perform one's regular duties. Terminations often occur before the illness is understood.
Loss of employment and inevitable medical costs - for most still with still debt, children and spouses to support - can lead to a major financial burden.
Don't wait to file necessary paperwork. Those with younger-onset Alzheimer's qualify for Social Security Disability Insurance[3] and Medicaid, which has a two-year wait. Because of this, there usually is a six-month gap from the time COBRA ends to the time Medicaid becomes active.
Caregivers need care
Younger-onset Alzheimer's manifests itself through frontotemporal degeneration, which deals with the part of the brain that affects language and behavior. Patients might lose their sense of sympathy or empathy, and begin to exhibit compulsive or ritualistic behavior.
They can become physically and verbally abusive.
Cheryl received her diagnosis in February 2009. By August of that year, she could no longer drive after she could not find her way home from her weekly salon appointment. She began to wander away from the house, making it dangerous to leave her home alone. Her aggressive behavior increased, and Baird had to help dress and bathe her while staying out of her grasp.
By then, Baird had returned to work in order to provide Cheryl with medical insurance. Although Cheryl had caregivers while Baird was away, he resumed the role of caregiver when he returned home after a 10- to 12-hour workday. The disease eventually took its toll on Baird, who ended up in the emergency room with chest pains.
It was during his hospital admission - away from Cheryl - that Baird was able to get a full night's sleep for the first time 10 months.
Like him, many overwhelmed caregivers end up seeking medical care after developing their own health conditions.
"You need to breathe and you need to take care of yourself," Baird said. "If something happens to you, what happens to your loved one?"
Baird's time in the hospital prompted some soul-searching and the decision that it was time to move Cheryl to a memory care facility. On Aug. 15, 2012, three years after Cheryl's diagnosis, she became a resident of the Kensington Memory Care Community[4] at The Abbey[5] at Westminster Plaza.
"It was the hardest day of my life," Baird said.
How to choose
The Alzheimer's Association provides a list of memory care communities in the area. Baird found it hard to take emotion out of the selection process, so he analyzed his choices on paper.
First, he listed memory care communities within a five- to 10-mile radius of his home. He then entered them into a spreadsheet where he could rate communities based on the issues important to him and Cheryl. Categories included the cost and size of the community, private vs. semi-private quarters, caregiver to resident ratio, and the availability of medical staff.
He also considered the size of available rooms, whether Cheryl would have her own furniture, safety and personal hygiene, and if he felt Cheryl would be comfortable with the people entrusted with her care. The reputation of each community also played a role in the selection process.
Importance of education
Six months after Ben's diagnosis, he enrolled in a day program at the Amazing Place, where he participates in physical and mental exercise, engaging activities and opportunities for socialization. He attends from 8 a.m to 5 p.m., twice a week. He is about to start volunteering twice a week at a local food bank.
Before working for the Alzheimer's Association, Taylor was a school principal for eight years. She hopes to make a difference by using her experiences as Ben's caregiver to help increase Alzheimer's awareness. She shares legal responsibilities with her brother Jim, and chauffeurs Ben to his day program.
Ben also has become an advocate for the disease. He was on stage for the Promise Garden Ceremony of this year's Walk to End Alzheimer's event. Held annually by the Alzheimer's Association in more than 600 communities nationwide, the event raises awareness and funds for Alzheimer's care, support and research.
During the Promise Garden Ceremony, participants raise flowers - with handwritten tributes and dedications - to represent their promise to remember, honor, care and fight for those living with Alzheimer's disease and their caregivers.
"The disease is devastating, but at the same time, my father and I have never been closer," Taylor said. "We are a team."
Learn more
For more information about younger-onset Alzheimer's, go to www.alz.org/Texas[6] or call 713-314-1313. For more information about The Abbey at Westminster Plaza, go to www.abbeywp.com[7] or call 281-556-6020.
References
- ^ Alzheimer's Association (www.chron.com)
- ^ Sarah Taylor (www.chron.com)
- ^ Social Security Disability Insurance (www.chron.com)
- ^ Kensington Memory Care Community (www.chron.com)
- ^ The Abbey (www.chron.com)
- ^ www.alz.org/Texas (www.alz.org)
- ^ www.abbeywp.com (www.abbeywp.com)
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