Alzheimer’s disease is the most common brain disorder among those 85 and older. It affects all types of memory function – from recognizing loved ones to tying your shoes. We asked doctors, attorneys and elder-care specialists for advice on spotting telltale signs of dementia and how to put financial and medical stopgaps in place for you and your family…
It starts with simple loss of memory – forgotten words and names, lost objects. Over time, people with Alzheimer’s disease forget the past, their loved ones and how to do simple activities.
Not only does Alzheimer’s disease cause a person to decline slowly, it also requires care for as many as 10-15 years – draining loved ones of energy and often depleting life’s savings.
“Anyone who’s watched a loved one go through Alzheimer’s disease feels traumatized,” says Richard Caselli, M.D., professor of neurology at the Mayo Clinic Arizona and clinical core director for the Arizona Alzheimer’s Disease Center. “It’s frightening to see a capable person brought to total dependency.”
Alzheimer’s disease is the second-most feared illness among Americans, trailing only cancer, according to a February 2011 telephone survey of 1,007 Americans conducted by Harris Interactive for the MetLife Foundation.
Of those surveyed, few had done any planning for long-term illness. Only 41% had talked to their families about the possibility of suffering a brain disorder. Just 21% had made financial arrangements, and only 33% had considered care options.
But, experts agree, it’s best to plan for Alzheimer’s before signs of dementia hit. In fact, you should consider these issues as you plan for retirement, says Rajiv Nagaich, an elder law attorney in the Seattle area and a board member of the National Association of Elder Law Attorneys.
Use your fear to take action, advises Lauren Kessler, author of Dancing with Rose: Finding Life in the Land of Alzheimer’s (Viking Adult). After her mother died from the disease, she worked in an Alzheimer’s care facility.
First, learn about the brain disorder, Kessler advises. Then follow these 7 expert-recommended tips.
1. Understand the risks.
Statistics tell only part of the story. As many as 5.4 million Americans currently have Alzheimer’s disease, and deaths from the illness rose by 66% between 2000 and 2008, according to the Alzheimer’s Association (AA).
If your parent has or had Alzheimer’s disease, you’re at a greater risk for signs of dementia.
Alzheimer’s research has identified a gene called APOE-e4 which may be responsible for as many as 25% of Alzheimer’s cases, according to the AA.
But most doctors don’t recommend genetic testing – even if your relatives had Alzheimer's.
That’s because APOE-e4 is “not a perfect predictor,” Caselli says. “It doesn’t tell us when, or if, somebody will develop Alzheimer’s disease.”
The greatest risk factor is something you can’t prevent: old age.
According to the AA, most people with the disease are age 65 or older, and the risk of developing it doubles every five years after that. Of Americans aged 65 and over, 1 in 8 has Alzheimer’s, and nearly half of people aged 85 and older have signs of dementia.
Early-onset Alzheimer’s – which strikes before age 65 – has a stronger genetic link. But it's also relatively rare, accounting for fewer than 5% of all cases.
2. Keep your heart healthy.
Protecting your heart can reduce risk slightly, says Deborah Blacker, ScD, M.D., director of the Gerontology Research Unit at Massachusetts General Hospital in Boston.
“Anything you can do to reduce your risk of cardiovascular disease,” such as eating well and exercising, reduces your risk of dementia, she says.
Observational studies – based on autopsies of Alzheimer’s patients – indicate this may be because vascular damage to the brain (such as that caused by small strokes) can add to signs of dementia.
A 2004 study of 153 deceased members of the Catholic clergy – known as the Religious Orders Study –found the presence of one or more infarctions (death of tissue due to obstructed blood supply) increased risk of dementia by 2.8-fold.
Each heartbeat pumps 20%-25% of your body’s blood to your head. Your brain cells rely on this blood as a source of food and oxygen, making the health of your heart vital to mental acuity.
3. Watch for confusion or personality changes.
Don’t worry about occasional memory lapses, says Caselli.
“We all lose our keys or forget an appointment from time to time.”
Signs of dementia go beyond simple loss of memory.
“If you – or those around you – see a change in use of language, movement or judgment, it’s time to get things checked out,” he says. The exact changes will be different for everyone, he adds. But the time to become concerned is when they’re noticeable and affect daily life.
Here are some visible red flags of Alzheimer’s disease:
Loss of memory that disrupts daily life
Difficulty planning or solving problems
Difficulty completing familiar tasks
Confusion with time and place
Trouble understanding visual images and spatial relationships
New problems remembering words
Misplacing things and losing the ability to retrace steps
ecreased or poor judgment
Withdrawal from work or social activities
Changes in mood or personality
4. Talk to your family.
“You need to have a discussion with your children about illness in general, before the disease strikes,” Kessler says.
Tell your family your wishes, and speak with them openly about how you want your care to be handled if you get a brain disorder and your judgment is impaired.
“Alzheimer’s is a family affair,” Caselli says. “The patient doesn’t make decisions or manage his own care. It’s the caretaker who drives him, looks after his finances and supervises him round the clock.”
5. Make legal and financial decisions early.
“Whether or not you’re at risk for a brain disorder, it’s wise to prepare for long-term disability,” Caselli says. “There are other conditions (such as stroke, cancer and heart disease) that can disable you, and it can happen to any of us.”
It’s best to consult a financial planner or lawyer with a specialty in elder law, says Nagaich.
“The most critical thing is to set up your estate so you don’t become a burden on children and loved ones,” he says.
Ask your lawyer or financial planner to investigate whether you qualify for Medicaid or veteran’s benefits. (Medicare will not cover long-term care, he says.) Look into setting up a trust or purchasing long-term care insurance for your family to draw from if they need to pay for your care.
Also consider setting up a power of attorney so your family can step in and manage your affairs. Consider adding a requirement that all medical decisions be made by your family in consultation with a geriatric care manager, Nagaich suggests.
“A geriatric care manager helps your family navigate medical issues,” he explains. “She may be able to select the least expensive and most appropriate help.”
Your attorney or financial planner can recommend someone, he says, or you can find one through the National Association of Professional Geriatric Care Managers.
6. Research long-term care.
Many people are scared of ending life in a long-term care facility. But for people with Alzheimer’s disease, it may be the best option, Caselli says.
“There can be a lot less stress and better quality of life for people with the disease if they’re in a place scientifically designed to deal with a person with Alzheimer’s,” Kessler says.
For example, she says, when someone with Alzheimer’s disease is cared for at home and starts to wander, the response is usually to lock the doors.
“Imagine how frustrating it must be when every door you try to open is locked,” she says. “You don’t have the language to express how you feel, so you tend to act out.”
In the long-term care facility where Kessler worked, “there was one locked door,” she says. “But there were plenty of other doors. People were able to walk off their stress.”
When planning for retirement, consider a complex for seniors with a “step-up” facility that offers more services, such as skilled nursing or memory care. This allows you to choose where you’ll be cared for.
If you’re not ready for that, it’s still a good idea to know which facilities are available in your area, and how you’ll pay for them, if needed.
7. Get tested.
Even though detecting Alzheimer’s disease early won’t stop it, medications can delay worsening of symptoms for 6-12 months, according to the Alzheimer’s Association.
But “it’s better to be diagnosed early,” Caselli says. “We can’t slow the progression of a brain disorder, but we can help you make plans. You can avoid all kinds of problems: taking medications the wrong way, driving when it’s not safe.”
If you’re concerned, start by visiting your family physician, who may refer you to a neurologist, psychologist, or psychiatrist for further testing. Alzheimer’s research hasn’t come up with a single test, but your doctor can perform a variety of different ones.
According to the Alzheimer’s Association, these tests combined can diagnose Alzheimer’s disease with 90% accuracy:
Analysis of your complete medical history
Tests of your mental status. These will include a mini-mental state exam (MMSE), which is a series of questions designed to test everyday mental skills, and a mini-cog, which tests cognitive skills such as memory.
A complete physical and neurological examination
Blood tests and brain imaging to rule out other conditions
To learn more about Alzheimer’s and get expert information and advice, visit our Alzheimer’s Disease Health Center.
How Much Do You Know About Alzheimer's Diease?
More than 5 million Americans have Alzheimer’s disease, and that number could climb to 16 million by 2050. Women face a higher risk of developing it than men, and are also more likely to become caregivers.
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