Thank you, dear. Do I know you?
The discouraging truths about dementia
By Joan Trossman Bien 10/03/2013
Remember when people used to refer to certain elderly relatives as “senile”? We used to assume that senility was an unavoidable part of aging so we accepted it and made allowances for the relatives’ eccentricities. We treated this condition as if it were harmless.
Now we know that senility, a term that was tossed around with a touch of gallows humor 50 years ago, was actually what we now call dementia and Alzheimer’s disease. We also are now aware that dementia affects millions of American families. That same pool furnishes most of the default caregivers for at least part of the journey.
Medicinenet.com provided a description of dementia. “A collection of symptoms that include decreased intellectual functioning that interferes with normal life functions and is usually used to describe people who have two or more major life functions impaired or lost such as memory, language, perception, judgment, or reasoning; they may lose emotional or behavioral control, develop personality changes and have problem solving abilities reduced or lost.”
Earlier generations did not have to worry about this scenario because far fewer people lived long enough to get dementia. But that has changed and this situation is one of the unexpected consequences of highly advanced medicine.
Dementia is a devastating condition that ends only upon death. There is no cure or meaningful treatment. There are, however, many paths that are yielding hopeful signs for creating a template for improvement.
The early signs
There is a false impression and general fear that masquerades as fact. That is the belief that when you forget small things, like accidentally putting your keys in the freezer while unpacking groceries, or going blank on the name of an acquaintance you have known for 20 years, you are taking the first steps down the path of dementia.
Not really true, said Dr. Zaldy S. Tan, medical director of the UCLA Alzheimer’s and Dementia Care Program. He said there are distinct areas of behavior that can indicate encroaching dementia.
“The first signs of dementia are pretty subtle,” Tan said, “like misplacing things or getting lost while driving. It really is a matter of frequency. A lot of patients tend to repeat questions that have been answered before but they don’t remember. In the mild stages, they have trouble making new memories. In the severe stages, it is losing information that they already had, like failing to recognize their children or spouse. They don’t remember giving birth or raising a child.”
Alzheimer’s is the most common form of dementia. Tan said another type, frontotemporal dementia, causes profound changes in personality. “It can be irritability,” he said, “or other changes of personality. People who are very polite start speaking with profanities, or people who are very loving become very irritable.”
“The progression was anything but linear,” said Susan Pricco of her mother’s descent into dementia. “Forgetfulness was just one symptom. Personality changes with increasing stubbornness, distrust of family and friends, gullibility and risky behaviors manifested themselves before our eyes.”
Other signs of early dementia include difficulty completing familiar tasks, confusion with time or space, difficulty reading, bad financial decisions, inattention to personal grooming or withdrawal from work or social activities.
These are all indications that the patient needs a complete evaluation by a qualified doctor who is familiar with dementia. If your doctor then dismisses your condition as one of the “walking well,” it is time to seek out someone with expertise in the field.
But exactly what type of doctor or specialist would be the most appropriate for diagnosing dementia? While the standard specialties are neurology and geriatric expertise, any physician may claim to be the right one.
It is confusing. For example, if you go to a specialized website such as Lifescript.com, which is a comprehensive medical source, it provides lists of local doctors. In their doctor directory for Thousand Oaks, however, the following types of physicians are listed as diagnosing and treating dementia: family practitioner, cardiologist, pulmonologist, internist, psychologist, endocrinologist, nephrologist, sports medicine specialist, gastroenterologist, infectious disease specialist and general practitioner. Perhaps ironically, more nephrologists (kidney specialists) are listed than are neurologists, and not a single geriatric or gerontology specialist is listed.
Am I going to get dementia?
The impact of dementia is devastating for patients and their families. A study by RAND Corporation found that in 2010 nearly 15 percent of Americans older than 70 had some form of dementia. It is a very expensive condition.
The study also projected a staggering fact: when the baby boomer generation fully reaches its senior years by 2040, about 9.1 million Americans will be living with dementia or Alzheimer’s disease at a cost that has been estimated to be between $379 billion and $1.2 trillion per year.
According to the study, “The main component of the costs attributable to dementia is the cost for institutional and home-based long-term care rather than the costs of medical services — the sum of the costs for nursing-home care and formal and informal home care represent 75 percent to 84 percent of attributable costs.”
That scary prediction was recently contradicted by a study from Denmark. It found that over the past two decades, the rate of people older than 65 from England and Wales getting dementia has dropped by 25 percent. How could this be?
Researchers say that folks in their 90s did twice as well on standard mental ability tests as did those of the same age in 1998. Researchers noted that the current group was a better-educated group that was also healthier than those at the end of the 20th century. Controlling blood pressure and cholesterol appeared to be the keys to keeping optimal brain functions.
Aside from age, some new risks have been articulated. A study from the University of Bordeaux, France, found that when the elderly were exposed to general anesthesia, their risk of dementia increased by 35 percent. It is called postoperative cognitive dysfunction (POCD) and can lead to dementia many years later.
A study from the Mayo Clinic identified some strange behavior as a reliable predictor of who is more likely to develop dementia with Lewy bodies (DLB). Men who act out their dreams during sleep. Those sleep habits indicate that the patient could develop that type of dementia possibly 30 years later.
Concussions are implicated in many cases of dementia later in life. Brain images have shown that abnormalities associated with mild traumatic brain injury look a lot like early Alzheimer’s disease. Researchers say that the resulting symptoms are not just caused by the physical injury to the brain but that the injury sets in motion a cascade of degenerative changes in the brain.
A study from the University of San Francisco found that seniors with anemia, some 23 percent of the elderly, have an elevated risk for dementia of 40 percent to 50 percent. Although researchers do not believe that anemia causes dementia, they surmise that the lower level of oxygen being carried to the brain may be involved.
Also at higher risk are seniors with poorly controlled diabetes. A study recently published in JAMA Internal Medicine reported that low blood sugar or hypoglycemia doubles the odds that a patient with diabetes will get dementia. This formula turns in on itself because a patient with dementia is more likely to be less careful with insulin and cause hypoglycemia. That, in turn, increases the risk for dementia and so on.
The most recent report looked at moderately raised blood sugar not severe enough to cause diabetes. Anything above the optimal blood sugar level increased the risk of dementia.
Many new ways to delay dementia
There is no cure for dementia or any of its many forms. There are, however, many new studies that have identified certain ways to reduce the effects of dementia in the early stages.
So-called “dementia dogs” are trained to help dementia patients navigate through their days. Dogs are creatures of habit and love a predictable routine. They can reliably remind patienst to take their drugs, guide them through city streets, and even alert them to an emergency. Additionally, dogs tend to take the edge off a bad mood.
Much stranger than having a dog, a study out of Australia found that even the right robo-pet, in this case a toy stuffed seal with artificial intelligence, can alter the mood of a dementia patient. Researchers found that interaction with a robo-pet, programmed to respond to touch and sound, can lift the mood of a patient. These faux seals are able to recognize their own names, respond to frequently used words, and show emotions like happiness, anger and surprise. Anxiety was diminished and patients were happier when around those sophisticated toys.
Drugs and nutrition also play a role in improvement. Dr. Robin Miller from Oregon trained at Johns Hopkins in the specialty of integrative medicine, which advocates treating the whole patient instead of just the illness. She said she has seen improvement based on certain B vitamins.
Dr. Robin Miller of Oregon, who trained at Johns Hopkins
in the specialty of integrative medicine, advocates treating
the whole patient instead of just the illness.
“Exercise is really important as well as eating a healthy diet such as the Mediterranean-style diet. There’s a vitamin called L-methylfolate and it makes a huge difference. Your body uses it to make serotonin, dopamine and norepinephrine — all good chemicals that help your brain function. Also, drinking coffee. Three cups of coffee a day will help reduce your chances of getting dementia.”
Although it has been established that high blood sugar or diabetes can increase the risk of getting dementia, researchers have found that one of the most common drugs given to lower blood sugar, metformin, lowers the risk of dementia in Type 2 diabetes patients by 20 percent. Other drugs that also lower blood sugar did not lower the risk of dementia.
A very large study of military veterans with cancer uncovered a surprising fact. Those who had been given chemotherapy had a reduced risk of dementia. The degree of risk varied with the type of cancer.
Even more surprising, an Italian study found that just having cancer greatly reduced the chances of dementia. The study defined an inverse relationship between the two conditions: those with cancer were far less likely to get dementia and those with dementia had a 43 percent reduced chance of getting cancer.
You might expect that challenging your mind would be helpful in slowing the progress of dementia and you would be right. But even people who are not completing the New York Times Sunday crossword every week will have some protection if they were avid readers as children. A study from Rush University Medical Center in Chicago found that mentally stimulating exercises at a much earlier age contribute to a reservoir of functionality later in life.
On the exotic and cutting-edge side, a new form of brain training using LORETA (low resolution electromagnetic tomography) maps is just becoming available. It is a much-advanced version of neurofeedback.
Ventura County clinical psychologist Barbara Blume said the technique is very exciting. “It treats the deep structures of the brain and the entire brain can be trained all at once. For dementia, it is very effective.” It requires many treatments, however, which can be expensive and Medicare does not cover the treatment.
Something that seniors can do right now to protect themselves is to continue working instead of choosing retirement.
Oxnard neuropsychologist Erik Lande evaluates patients for other physicians and prepares families to care for the patients.
Lande’s advice on staying healthy: “You have to stay engaged and involved with the world. The worst thing you can do is to retire, sit down on the couch to watch golf. Better they should be out playing golf. You have to be doing something that is challenging and enjoyable.”
Dr. Erik Lande, a neuropsychologist in Oxnard, recommends older adults
engage in challenging and enjoyable activities to keep the mind busy.
Caregivers: the Ultimate Volunteers
“There’s a lot that’s expected of the caregivers,” UCLA’s Tan said. “For most people who get dementia, their caregivers are the ones who get lost. There are not many things out there in the community that they can turn to.”
Tan said the typical progression can be crushing for the caregiver. “They are initially expected to be the patient’s crutch. When the condition progresses, they become more dependent functionally. When it reaches the moderate stage, they need help with the wandering issues, and the caregivers become security guards. They never really get to sleep. Later, they are expected to be the person that does all the caregiving. If the person develops behavioral problems like agitation, hitting, hallucinations and delusions, argumentative, it becomes really very difficult. Depression in caregivers is very high.”
Mary Mendenhall of Westlake Village had just retired when it became apparent that her mother needed help. The first stop in her march toward dementia was an assisted-living arrangement. But a series of falls, including down some stairs, indicated the need for 24-hour care. “It was pretty strangling,” Mendenhall said.
Diagnosed with mild cognitive impairment, Mendenhall said her mother then declined into dementia after being placed in a board and care home. “The behavioral problems, the anxiety, the agitation, we went through all of that.”
Mendenhall said her life was turned upside down with her mother’s care. “To be honest, I guess in some ways I felt resentful. I have a handicapped daughter, too, so I have it on both ends. At the same time, my husband was diagnosed with cancer for the second time.
“I always say, life is short except if you are my mom,” she added.
In addition to the enormous financial cost, the dizzying emotional cost, and the physical cost for the caregiver, there is one more common factor.
“My guilt was unbearable,” said Katie Watts, a friend of Pricco’s. Both women cared for their mothers near the end. “I’d promised never to put her in a home and there she was, my devastatingly clever, beautiful, chic, intelligent, witty, snobbish mother, in with middle-class people, none of whom she would have chosen as neighbors let alone friends.”
When her father died at age 92, Watts had not been told that her mother had dementia, and her mother’s doctor didn’t tell her for an entire year. One thing she wishes had been different is for her parents to have put in place a VSEAD — voluntarily stopping eating and drinking — because it is the only legal way to commit suicide in California.
“I wanted to end her suffering and my own, but by the time I realized what was wrong with her, it was far too late. The government has got to acknowledge that, with a death sentence like dementia, allowing suicide or assisted suicide is a blessing. It is not suicide or murder; it is a release.”
Tan agreed that something needs to be done. “We need to find better ways to take care of people who get dementia.”