Alzheimer's cases, costs continue to skyrocket
Dayton Daily News (OH)Jun 25, 2016
Along with the emotional blows delivered by the degenerative brain disease, the cost of care for Alzheimer's -- which often lasts for years -- eclipses that of all others and threatens to overwhelm a stretched health care system and sap caregivers' life savings.
"I wasn't at that point in time convinced I had it," Dick said. "I had a pair of old slippers and I still wear them. They would catch on things then I would kind of stumble and drag my feet. That's one of the signs."
Looking back, Jeannie said a real tipoff came at least two years ago when her "rocket scientist" husband, a retired aerospace engineer, began having trouble with math and other normally routine tasks.
"We finally ended up making the appointment with the doctor when he put his coat on upside down three times. The collar would be on his back and the tail of the coat would be up around his neck," Jeannie said. "He had difficulty getting the blankets straight on the bed ... He quit helping much in the kitchen because it was confusing."
Dick, 77, was used to driving big projects ahead at
A lifelong love of automobiles, particularly those manufactured in
Now he's turned over his car keys to Jeannie.
"It's hard for anybody to give up driving. That's a whole lot of your independence. It's even harder for men," Jeannie said. "And then a man whose life has revolved around cars and working on cars, and raised in an era where fathers and sons hung out and talked about their cars ... Not driving was a big thing and he did it very gracefully."
Billions for care
This year, an estimated
"It's already three times more expensive if they have an Alzheimer's diagnosis than for somebody who doesn't because everything's more complicated -- and they have that for eight, 10, 15 years," said
Nearly one out of every five
Alzheimer's disease, which often is overlooked as normal aging, can't be prevented, cured or slowed.
"It's a fatal neurological disease," VanVlymen said. "It's not just getting older, which most people associate with it. And it's not just a little memory loss.
"Memory loss is one of the first symptoms, but this is a neurodegenerative disease that works on all areas of the brain and slowly creates deficits in all areas of the brain to a point where they can't breathe. Their body forgets how to breathe and swallow."
VanVlymen said physicians sometimes are reluctant to give patients a diagnosis that doesn't leave some hope for recovery. But problems arise when family members aren't told and are left unable to identify or explain changed behaviors in loved ones.
"A lot of times (family members) blame the person with dementia," VanVlymen said.
Low disclosure rate
Doctors reveal an Alzheimer's diagnosis to only 45 percent of patients with the disease or their caregivers, according to the
"These disturbingly low disclosure rates in Alzheimer's disease are reminiscent of rates seen for cancer in the 1950s and 60s, when even mention of the word cancer was taboo," said
"It is of utmost importance to respect people's autonomy ... When a diagnosis is disclosed, they can better understand the changes they are experiencing, maximize their quality of life, and often play an active role in planning for the future."
It's unclear whether doctors leveled with
"If we could have gotten an accurate diagnosis he probably could have had some trials, different drug trials. But it took at least three years to get him properly diagnosed," Danielle said. "Because he was so young, that was the last thing doctors think of ... They were telling him it was depression, or he needed to change his diet."
Randy, now 62, was given an Alzheimer's diagnosis five years ago, but the disease had progressed so far that he didn't qualify for trials, said Danielle, who lives in
Drugs can ease symptoms for a time, but the disease marches on unimpeded, VanVlymen said.
Scientists are working to unravel protein buildups in the brain called plaques and tangles, which are believed to be responsible for damaging and killing nerve cells. But therapies to delay onset or reverse the disease remain elusive.
Earlier this month, the
Caregivers' burden
About one in nine people aged 65 or older have Alzheimer's, and about two-thirds are women. Women by about the same proportion also become primary caregivers.
Reid's father, Mark, died at 67 from the disease in 2010.
"My poor mom, what she went through," he said. "You never knew what he was going to get into. We changed the locks on the door because he would get out and wander. She worked a full day and would have to come home and deal with different sleeping patterns. She went through a time when he'd be up for 24 hours then sleep for 24 hours."
Reid, 43, of
"I got called home several times from work because he did something or got into something," he said. "You're wondering what's happening and then you have to leave. It impacts your daily life.
"My wife had to make sacrifices because evenings I wanted to be with them, there were times when I couldn't because I had to go help my mom."
According to the
Reid said drawing awareness to Alzheimer's is key to educating the public and drawing support for programs that might ultimately relieve the strain on families and federal resources.
"There are a lot of implications of this disease that are all no good," he said. "The more we can put into research, the more we can put into advocacy, the more we can put into early detection, the better off we all individually and collectively will be."
'We're still living'
"People who go around with their head down, woe is me, that's what they get paid back with," Dick said.
Jeannie said she "turns problems into projects" and is reading all the research she can find on the disease. She keeps Dick as active as possible.
"We're still doing things, we're still living," she said. "We still see family. We still do all things anybody else can do. Later it will change, but that's true of anything. Life is not a solid thing. Life is fluid, and we are blessed."
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Alzheimer's risk factors
Age
One of nine people 65 or older has Alzheimer's; nearly one in three 85 or older has the disease. It's unclear why Alzheimer's disease risk rises so dramatically as we grow older.
Family history and heredity
A strong risk factor is family history. Those who have a parent, brother, sister or child with Alzheimer's are more likely to develop the disease. The risk increases if more than one family member has the illness. When diseases tend to run in families, either genetics or environmental factors, or both, may be factors.
Source:
Ten signs, symptoms of Alzheimer's
1. Memory loss that disrupts daily life
One of the most common signs of Alzheimer's is memory loss, especially forgetting recently learned information. Others include forgetting important dates or events, asking for the same information over and over, increasingly needing to rely on memory aids (such as reminder notes) or family members.
Typical age-related change: forgetting names or appointments, but remembering them later.
2. Challenges in planning or solving problems
Some people may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating or take much longer to do things.
Typical age-related change: making occasional errors when balancing a checkbook.
3. Difficulty completing familiar tasks at home, at work or at leisure
People with Alzheimer's often find it hard to complete daily tasks. Sometimes, people may have trouble driving to a familiar location, managing a budget at work or remembering the rules of a favorite game.
Typical age-related change: needing help to use the settings on a microwave or to record a TV show.
4. Confusion with time or place
People with Alzheimer's can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there.
Typical age-related change: Getting confused about the day of the week but figuring it out later.
5. Trouble understanding visual images and spatial relationships
For some, vision problems are a sign of Alzheimer's. They may have difficulty reading, judging distance and determining color or contrast, which may cause problems with driving.
Typical age-related change: vision changes related to cataracts.
6. Problems with words in speaking or writing
People with Alzheimer's may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves. They may struggle with vocabulary, have problems finding the right word or call things by the wrong name.
Typical age-related change: sometimes having trouble finding the right word.
7. Misplacing things and losing the ability to retrace steps
A person with Alzheimer's may put things in unusual places. They may lose things. Sometimes, they may accuse others of stealing. This may occur more frequently over time.
Typical age-related change: misplacing things from time to time and retracing steps to find them.
8. Decreased or poor judgment
People with Alzheimer's may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money, giving large amounts to telemarketers. They may pay less attention to grooming.
Typical age-related change: making a bad decision.
9. Withdrawal from work or social activities
A person with Alzheimer's may start to remove themselves from hobbies, social activities, work projects or sports. They may have trouble keeping up with a favorite sports team or remembering how to complete a favorite hobby.
Typical age-related change: sometimes feeling weary of work, family and social obligations.
10. Changes in mood and personality
The mood and personalities of people with Alzheimer's can change. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or in places where they are out of their comfort zone.
Typical age-related change: developing very specific ways of doing things and becoming irritable when a routine is disrupted.
Source:
By the numbers
5.4 million Number of people of all ages with Alzheimer's Disease
11 Percentage of people over age 65 with Alzheimer's
32 Percentage of people over age 85 with Alzheimer's
81 Percentage of all people with Alzheimer's who are age 75 or older
Source: 2010
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