"Had my mum known, she would never have divorced him and been his caretaker from the beginning," Staple, of Deerfield, Illinois, said.
FTD often is misdiagnosed as a psychiatric disorder or Alzheimer's. It affects the area of the brain generally associated with personality, behaviour and language and is often diagnosed in people between the ages of 40 and 45.
About 5.8 million people in the United States are living with Alzheimer's and dementia, said Heather Snyder, senior director for medical and scientific operations for the Alzheimer's Association. The number is expected to rise to 14 million by 2050. Approximately 16 million people are caregivers.
Halima Amjad, assistant professor of medicine in the Division of Geriatric Medicine and Gerontology at Johns Hopkins University School of Medicine, said that about 60 percent of people with dementia symptoms go unreported either from not being diagnosed or because of denial or shame.
So what should family members look for? What is attributable to normal aging as opposed to cognitive decline associated with dementia?
It is common to misplace keys or eyeglasses or walk into a room with a task in mind and forget what that is. Those are often attributable to multitasking or stress and are considered part of normal aging.
"It's one thing to find your glasses on your head - it is something else to find them in the freezer," said Lisa Rindner, a social worker at Iona Senior Services in Washington who works with families navigating the challenges of aging, Alzheimer's and dementia.
Rindner advises families to seek advice even if their concerns are not extreme.
"I am so grateful when people come for a consultation, and it's not a crisis point," Rindner said. "Educate yourself and explore options before you need them so that when you do need help, you are not frazzled. We make better choices when not in a crisis."
Nancy Berg of Vernon Hills, Illinois, said there were warning signs of Alzheimer's long before her father, Bert Rose, was diagnosed. For more than 60 years, Rose played piano with the Bert Rose Orchestra and performed at events and weddings including the nuptials of Sharon Percy and Jay Rockefeller. He accompanied celebrities such as Ann-Margret, Debbie Reynolds and Brooke Shields.
Widowed in 1984, Rose was used to living an independent life. He was still working in his 80s when his daughter noticed small signs - word retrieval problems and repeating stories. Then Rose began getting lost from Berg's house to his own, a route he had driven many times. Always fastidious with his appearance, he started wearing sweaters in warm weather. In restaurants, he would ask family members what he liked to eat. And about a year before his diagnosis, he had trouble filling out a bank deposit slip, not understanding what the date was or how to enter it. The scariest instance, Berg said, was when her father laughed as he recounted starting his car without opening the garage door first.
"I wish I had known what signs to look for - we might have moved him out of his home sooner to know that he was safe," Berg said.
Rose died about 18 months ago. Although much of his memory was gone, he continued to play piano for residents of the care facility where he lived until the end of his life, Berg said.
Families with aging relatives need to know what their baseline and norm is, Rindner said. Pay attention when a loved one cannot recall a conversation, misses appointments, doesn't pay bills, has their phone shut off or their TV doesn't work.
"People have a remarkable way to mask decline," Rindner said. "It may take a while before you see red flags."
Here are some things to look for:
• Notes with reminders about simple tasks.
• When neighbours or friends share concern.
• Bills not paid or overpaid.
• Physical appearance - someone who was always put together suddenly wears wrinkled or dirty clothing.
• Weight changes.
• Driving issues: fender benders, parking in the wrong spot.
• Any behavior that is out of the ordinary.
• Picking up an object and using it inappropriately.
• Saying things that are inappropriate - "no filter."
• Changes in speech, personality.
Rachael Wonderlin, owner of Dementia by Day and a dementia specialist, encourages families to get involved early.
"If you think something is wrong, talk about it," Wonderlin said. "It's worse to ignore it. I have seen families wait way too long to take the car keys away. People wait a long time because they are scared and push it away."
Wonderlin said to take notice of what she calls "well, that was a weird moment." For instance, Wonderlin was assessing a woman and did not see any deficits - until the woman asked if she could make a phone call and picked up the television remote.
It is normal at age 60 for people to not recall everything, "but if your memory was impeccable and suddenly you can't remember a thing - and you have had enough sleep, are eating well, exercising and hydrated - that is cause for concern," Wonderlin said.
Also, Wonderlin said, older partners tend to finish each other's thoughts, which may mask the problem.
"I met a couple, and the woman has dementia," Wonderlin said. "I needed her husband not to talk. He answered questions because he loves her and wants her not to be confused. So he does chores and finishes sentences. It kept family members from realising there was a problem."
And move family members to assisted living before there is a crisis, Wonderlin said. People are more open when they realize it's necessary.
"Don't rely on 'this is fine so far' - it's not going to stay fine," she said.
