Amid all the uncertainty that accompanies a diagnosis of dementia, one question looms above all others: How many years have I got left before I lose my faculties?
There’s no easy answer.
After a diagnosis, people can live well over a decade with dementia. But they can also decline and die fairly quickly. It’s tough to predict accurately an individual’s rate of cognitive decline because many variables come into play.
Steven DeKosky, a professor of neurology at the University of Florida, says the degree of variability is astounding. Testing dementia patients every six months has showed that some people who decline rapidly between January and June would stabilize for the rest of the year, while others who fared well during the first half of the year would struggle after July.
“Now we usually test patients just once a year,” he said. “Over that time, it tends to average out.”
DeKosky, a fellow of the American Academy of Neurology, lists four indicators that can help the newly diagnosed guesstimate their rate of cognitive decline:
Timing of diagnosis. Many people suspect something’s wrong with their cognition, but they put off seeing their primary care physician (who in turn will refer them to a neurologist) to discuss it. By the time they receive a dementia diagnosis, they may have advanced to a more severe stage of the disease.
Overall health. Actuarial data shows that those who already grapple with heart disease, pulmonary disease or other serious issues may face reduced longevity, especially if these conditions are not adequately treated. Add dementia to the mix and their cognition can fade due to many factors.
Socialization and support. Individuals who are lonely and lack a support network are at a disadvantage in dealing with dementia compared with those with a close circle of family and friends.
Level of intellect. Highly intelligent people—and those who have worked in a cerebral profession—may have what DeKosky calls “built-in resilience and cognitive reserves” to cope more effectively during the initial phase of the disease. They may still decline somewhat faster once they deplete their ability to manage or compensate for memory loss, language difficulties or executive function. But at least they’re better equipped to power through at first and exert more autonomy in the early going.
Even if you lack some or all of the above advantages at the outset, DeKosky says you can gain at least some control in the months and years after a dementia diagnosis by taking steps to stay healthy. Examples include sleeping eight hours a night, adopting a Mediterranean diet (as opposed to high fat, high sugar consumption), exercising regularly and avoiding medications that can affect cognition.
“These may all make a difference in how you feel,” he said.
On a practical level, freshly diagnosed individuals need to anticipate and address a series of sensitive matters. Ideally, they’ve already completed advance directives and a living will. And they’ve appointed people they trust to serve as durable power of attorney to handle their finances if they become incapacitated—and durable power of attorney for healthcare. Consult an attorney to confirm all your legal and financial documents are in order.
“You should also do a video that outlines what you put in your directives,” said Kim Callinan, president and chief executive of Compassion & Choices, a nonprofit group that focuses on end-of-life care. “It provides a seal of approval” of what you want your loved ones to know and do to honor your end-of-life wishes.
Compassion & Choices provides a free online “Dementia Values and Priorities Tool” to specify your preferences for care and instructions to help loved ones make decisions on your behalf as the disease progresses.
“The default in our medical system is you’ll get all the care,” Callinan said. “But with dementia, most people at some point want a peaceful death” rather than being kept alive, possibly for many years, in a bedridden state where they lack cognition and need round-the-clock help to eat, wash and use the toilet.
Diagnosed with dementia? It’s hard to know how fast you'll decline, so start planning for what’s next - MarketWatch
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