Inside the Dementia Epidemic: A Daughter's Memoir

by Martha Stettinius

  I think of all the years my mother ate large amounts of sugar—when she stopped drinking, the pound bags of M&M’s; over the last years at the cottage, tons of cookies and ice cream. Although she was never diagnosed with diabetes, it’s likely that, like me, Mom has been pre-diabetic and insulin-resistant for years.

  While twenty million people in the United States have Type II diabetes, twice that number are insulin resistant and pre-diabetic. Unfortunately, this condition often goes undiagnosed until it progresses into full-blown diabetes. With so many of us pre-diabetic, we need more awareness of this condition, and more research into its connection to Alzheimer’s.

  In 2010, researchers at Kyushu University in Japan reported that people with diabetes or pre-diabetes are more likely to develop beta amyloid brain plaques. Another study has determined that a nasal spray of insulin improves the brain’s use of glucose, as well as memory and cognitive functioning. Some anti-diabetic drugs, such as rosiglitazone, seem to help brain functioning in people with Alzheimer’s.

  A team at Northwestern University has determined that a toxic protein, called an ADDL (amyloid beta-derived diffusible ligand), strips brain nerve cells of insulin receptors, leaving them insulin resistant. Both brain insulin and its receptors are lower in people with Alzheimer’s disease. ADDL’s start to build up at the beginning of Alzheimer’s disease, but may prove to be reversible.

  Low-Carb Diets for the Brain

  For the past year I’ve slowly eaten less and less sugar and starch—down, now, to less than 30 mg a day, mostly from vegetables; I eat primarily animal fat and protein (organic whenever I can), raw cheese, eggs, olive oil, and low-carb vegetables. When I started this diet I didn’t know about the connection between insulin sensitivity and neuron damage. I wanted simply to lose weight and to lower my high blood sugar level so I wouldn’t develop diabetes; in the past, a less drastic reduction in carbohydrates had not worked for me. For my whole adult life I’d followed the general medical advice since the 1980s to eat low fat—which essentially means high-carbohydrate—and by my mid-thirties I carried the extra eighty pounds I mentioned earlier.

  With this low-carb diet I hope to move my metabolism from glucose-based and insulin resistant to something called “ketonic” or “ketogenic.” When our bodies, including our brains, run on fat, not glucose, we’re using ketones for energy, which is perfectly healthy and efficient. In fact, a product called Axona® has been shown in a recent study to improve the cognitive functioning of some people with Alzheimer’s disease by overcoming their brains’ resistance to glucose by fueling them with ketones. A prescription, FDA-designated “medical food,” Axona is a powder mixed with water or food and consumed once a day. According to Accera, the maker of Axona, “Ketone bodies are naturally occurring compounds that are produced mainly by the liver from fatty acids during periods of extended fasting. Ketone bodies have been demonstrated to protect neurons.”

  Several families in my heavily-vegetarian community have also switched in recent years, for different reasons, to low-carb or high-fat ketogenic diets: “paleo” diets based on a hunter-gatherer diet, before agriculture, with organic meat, fish, vegetables, small amounts of fruit, roots, and nuts; “Gut and Psychology Syndrome (“GAPS”) diets heavy on organic fatty meat, soups made from bones, fish, eggs, butter, fermented vegetables, nuts, seeds, coconut, and olive oil; and low-carb diets based on the recommendations of the Weston A. Price Foundation that studies the food and health of “traditional” societies around the world. Several of us buy whole, raw milk from a neighbor’s cow, delivered weekly; we enjoy organic, free-range eggs, with their rich, orange yolks, from a local farmer and from coops in our own backyards; and this fall we expect another delivery of organic, grass-fed beef—affordable purchased in bulk—from another neighbor with a large herd of pastured dairy cattle.

  I follow the advice of Gary Taubes in his book Good Calories, Bad Calories: Challenging the Conventional Wisdom on Diet, Weight Control, and Disease (and his shorter version of the book, Why We Get Fat, and What to Do About It). I eat very little grain, legumes or fruit, and supplement our family’s meat-based diet with my large vegetable garden. My diet is low in the inflammatory Omega 6’s so prevalent in grain, processed foods, and vegetable oils, and rich in anti-inflammatory Omega 3’s. Though my total cholesterol level is higher than most doctors consider optimal, it is not primarily LDL, the “bad,” low-density kind that forms plaque on arterial walls, but mostly HDL, the high-density, fluffy kind that is less likely to clump and cause stroke and heart disease. Even on a diet high in animal fat, my triglycerides—a risk factor for stroke and heart attack—continue to go down.

  Although I don’t pay attention to most bloggers on medical issues (and refer in this book only to research published by established medical associations), I do follow the blog of Dr. Emily Deans, a psychiatrist who believes in “evolutionary medicine”—how “diseases of civilization...are caused by differences between our current lives and our evolutionary suitability, and that replicating a hunter-gatherer life in many ways (as makes scientific and practical sense) can lead to better health, both physical and mental.” Referring to the connection between glucose, insulin, amyloid build-up, and Alzheimer’s, she says, “if you wanted to stop Alzheimer’s by targeting amyloid, you would have to start decades earlier [before plaques form]...Low-carbers, paleo diet enthusiasts...or anyone else who avoids hyperglycemia could be preventing amyloid build-up at this long prodromal stage, thus possibly reducing risk of later Alzheimer’s.”

  It’s all supposition at this point, but for someone like me who has insulin resistance, a ketogenic diet may be a good idea. Starting now, I may be able to prevent insulin resistance in my brain, and a concomitant build-up of amyloid beta.

  Appendix G:

  The Benefits of “Memory Consultations” and Early Diagnosis

  Memory Consultations

  Countries such as France are ahead of us in providing “memory consultations.” A French multi-center task force recommends a comprehensive memory consultation for every elder on a regular basis—with an initial consultation before they experience memory or cognitive decline.

  The consultation would evaluate areas such as nutrition, metabolic functioning (diabetes, insulin resistance, etc.), depression, activities of daily living, gait and balance, frailty, age, sex, education, living arrangements, medical history, a clinical examination, and cognitive functioning. These evaluations would involve a general practitioner, geriatrician, and a neurologist—not one or two, but all three.

  Memory care programs in the United States offer similar consultations with multi-disciplinary teams, but as the website of the Memory Care Program at the University of Rochester Medical Center points out, “One of the barriers to creating a comprehensive memory care program is that...while health insurance covers some aspects of dementia care, many of the important time-intensive evaluations and follow-up care services are not reimbursed.” We have excellent memory care programs, but access may be limited.

  • • •

  Wellness Visits

  As of January 2011, under the Affordable Care Act, anyone with Medicare Part B is eligible for an annual wellness visit that includes a cognitive assessment, an evaluation of risk factors for diseases such as Alzheimer’s, and recommendations for referrals to programs to help reduce those risk factors (such as seeing a nutritionist or joining a smoking cessation program). This annual visit, which is fully covered with no deductible, co-insurance, or co-payment, and thus helps seniors who cannot afford to go to the doctor until they’re ill, is a step in the right direction.

  According to the Centers for Medicare & Medicaid Services, however, by the end of 2011 only an estimated 1.3 million people will have received a wellness exam, out of the 46 million who are eligible. Whatever the reasons for the program’s under-utilization, I can’t help but think that if my mother had had access to annual wellness visits under Medicare from the age of 65, with its cognitive assessment a
nd discussion of her risk factors, she might have changed some habits and been in better health over the following ten years.

  Benefits of Early Diagnosis

  Many doctors—including my mother’s small-town family doctor and Dr. Claiborne—shy away from a diagnosis of Alzheimer’s, but a recent survey by the Harvard School of Public Health, of adults in France, Germany, Poland, Spain, and the United States, indicates that most people want to know as soon as possible if they’re showing signs of Alzheimer’s. Contrary to what one might expect, they don’t want to hide from the possibility; they want early diagnosis so they have a shot, however minor, at prevention and delay.

  In their 2011 report Alzheimer’s Disease Facts and Figures, the Alzheimer’s Association explains why early detection and diagnosis is so crucial. The list is long, but worth sharing:

  a) The cognitive decline may be caused by something treatable, such as depression or a vitamin B12 deficiency, and early diagnosis prevents further decline;

  b) It’s important to discuss the diagnosis with family members and begin the search for appropriate support services;

  c) Such a discussion reduces anxiety by naming the problem;

  d) Medication and other approaches may be used to manage symptoms;

  e) Early diagnosis gives people the option of joining clinical trials;

  f) It allows more awareness of how some combinations of medications make symptoms worse;

  g) It alerts doctors and family members to the possibility that the person may need assistance with daily tasks such as cooking and managing medications;

  h) It may reduce falls and other accidents because caregivers are more aware of the dangers;

  i) It allows an awareness of financial problems such as the person giving money to scams; and

  j) It allows the person with dementia and their family members to plan for the future.

  I can’t help but wonder how the last years of my mother’s life at the cottage—and the seven years since then—might have been different if she’d received a diagnosis of mixed dementia years ago. If she’d been given a comprehensive, written evaluation, she would have studied it thoroughly. Most likely, the weight of its authority would have prompted her to share it with me.

  Appendix H:

  Planning for Long-Term Care

  When I think of my own financial future with Ben, and the astronomical cost of long-term care, my gut reaction, like that of many Americans, is to say, “Why bother saving every penny for our old age? Why bother saving anything?” The only thing that will convince me to plan ahead for long-term care is if we can invest in affordable, guaranteed long-term care insurance.

  In March of 2010, President Obama signed a bill passed by Congress called the Community Living Assistance Services and Supports (CLASS) Act, to provide the first national long-term care insurance program in the United States—the kind of program most developed nations already have. CLASS was designed to help people with disabilities or cognitive impairment who need help with activities of daily living (ADLs) such as bathing, dressing, and eating, and who want to remain at home and stay out of a nursing home, and also to relieve the burden on family caregivers. Benefits could be applied not only to in-home care but to adult day care in the community, assisted living, and nursing homes.

  By the fall of 2011, though, CLASS was revoked. Not enough young, healthy people were expected to enroll and keep the program afloat. An amendment also required that the program be proven to be financially self-sustaining for 75 years, and that could not be assured. Robert Yee, the program’s chief actuary, said that the program might have worked if the waiting period before receiving benefits were expanded from five to fifteen years, and if the program had started only with large employers.

  If CLASS had existed successfully years ago as it’s written now, my mother would have been required to pay the premiums for at least five years before receiving benefits. She would have been required to enroll while she was still working at least part-time, and to work for at least three years of the five before she could receive benefits. (If your employer participates, you can opt out of the automatic deduction, thus making it voluntary.) In my mother’s case she would have had to enroll by her mid-50s.

  Premiums for CLASS average $123 a month, which is $1476 a year—less for younger people, and more for older people. This amount would have been a prudent investment for most people, if the Act had survived, as at least seventy percent of people over age 65 need chronic long-term care services that are not covered by Medicare (or by Medicaid until after they’ve spent their savings and become impoverished). Forty percent of people receiving chronic long-term care are between the ages of 18 and 64, often because of sudden injury or illness such as a head injury or stroke.

  We are all likely to need long-term care at some point. According to the Family Caregiver Alliance, “the lifetime probability of becoming disabled in at least two different activities of daily living or of becoming cognitively impaired is 68% for people age 65 and older.” While three out of ten elders will die quickly and never need long-term care, and seventeen percent of elders will need assistance for only a year or less, more than fifty percent will need help for at least a year. One out of five elders will need assistance for five years or more. Women are twice as likely as men to need care for more than five years.

  Long-term care at home lasts an average of three to five years, assisted living care 2.5 to 3 years, and nursing home care 2.3 years. Twenty percent of people age sixty-five will end up spending over $100,000 in long-term care costs, and one in twenty will spend more than $250,000. Despite these statistics (odds much less in our favor than, say, the odds that we’ll burn down our house and need homeowners insurance), few of us buy private long-term care insurance—less than 3 percent.

  One benefit of CLASS, compared to private long-term care insurance companies, was that no one could be excluded from enrollment because of a pre-existing condition—even a diagnosis of Alzheimer’s disease. That’s not to be underestimated.

  If CLASS had existed years ago and my mother had paid the premiums, she would have been able to receive benefits—mandated to be at least $50 a day, and estimated to be an average of $75 a day—when she first needed assistance or supervision with activities of daily living after she was injured in assisted living. In fact, triggers for benefits in CLASS included any cognitive impairment that lasts for at least 90 days and requires assistance or supervision for health and safety, so Mom might have qualified for aides at the cottage or in my home, as she needed help to cook and clean.

  My mother’s savings ran out two years into her stay at Elm Haven, so if CLASS had paid for half of her care for those two years, and part of the cost of private aides and assisted living before that, she could have lived at Elm Haven for at least four years instead of two (if her health allowed). Ben and I might not have had to sell the cottage.

  If the CLASS Act had continued, Ben and I would have participated in it. In the absence of such a public program, I know we should buy private long-term care insurance, but the cost will be a stretch, and we will put it off.

  According to Howard Gleckman, author of the book Caring for Our Parents, the best time to purchase private long-term care insurance in the United States is in your fifties, when the premiums are more affordable. Since Ben and I can’t afford premiums now, we will hedge our bets that we will make it to our mid-fifties without a serious pre-existing condition that would disqualify us for acceptance. (If we are unlucky, and suspect that one of us has early dementia, we will try to make sure that we secure long-term care insurance before we ask a doctor for a diagnosis and it’s recorded in our medical files.)

  The average annual premium for private long-term care insurance for a fifty-year-old is about $850. For that you get a higher average daily benefit rate than with CLASS—$100 instead of $75; four years of coverage; and 5% compounded inflation protection, which is very important, because without inflation protection a policy is worthless. The
average annual premium rises at age 65 to $1,800, at 79 to $5,500.

  Private long-term care insurance needs more government regulation to be viable and affordable. Other countries have public long-term care insurance programs that work. Germany, for example, collects premiums for long-term care as a payroll deduction, much like our Medicare and Social Security, through a person’s entire life, making the premiums affordable for everyone. The deductions, 1.95 percent of wages in 2008, are mandatory, not optional as in our CLASS Act, but Germans consider them to be not a tax, as Americans would, but as insurance, much as we all insure our homes and our cars. The funds from these premiums are held and invested not by the German government, which might be tempted to spend them, as our government would, but by a quasi-private company. German long-term care insurance covers both home and institutional care and benefits can be received in cash. Their premium deductions may need to double by 2040 to cover costs, but overall the system works well, and ninety percent of Germans receiving benefits report that they are satisfied.

  Britain, on the other hand, has a system much like ours, with Medicaid-like government funds supporting those who do not have private long-term care insurance and who run out of savings. Neither the British system nor ours will survive the “silver tsunami” without significant change. Gleckman writes that “the United States is quietly heading for a financial, medical, and social meltdown...It is hard to imagine what is about to happen, not just to millions of individual families, but to our nation. It will profoundly change tens of millions of lives, ruin carefully planned retirements, and profoundly alter the way we think of our government.”