As the pandemic’s second wave takes hold, some experts again warn us about the impact on our mental health. So let’s consider how mental illness has become the major cause of disability in America — and how dementia in particular is surging.
Also worth discussing is how the perils of dementia have overtaken families, some tips for coping with it, and some thoughts on where to go from here.
And surging it is. In fact, as the Organization of Economic Cooperation and Development reports, dementia cases, by 2030, will increase by 50% in rich countries and 80% in poor ones. And by the OECD’s estimate, which they describe as “conservative,” there will be 82 million cases worldwide by 2030 and 152 million by 2050.
Please be forewarned that what you are about to read will be disconcerting, unless you have encountered dementia in someone close to you. Then it may be all too familiar. But there’s a positive side to this as well.
The good news from the American Journal of Psychiatry is the increased awareness of mental illness. But AJP reports as well of the “cultural and societal stigma around mental illness [that] has remained largely unchanged” from generations ago.
Amazingly, 50% of Americans will meet what are described as the “diagnostic criteria” for a mental health disorder during their lifetime, but only 40% of that number will receive treatment for their illness.
For people with dementia, unquestionably the pandemic has been a grim ordeal. During extended lockdowns, the loss of social, even routine, contacts has hastened cognitive decline in great numbers of people. Many who should seek help choose not to.
Studies in the U.K. cite dementia as the most frequent “pre-existing condition” among fatal COVID-19 cases. And according to the Sept. 4 edition of the Economist, and in several issues of the American Journal of Psychiatry, dementia-caused deaths are climbing fast, second only to COVID-19, both here and in the U.K.
More than 50 million people suffer from diagnosed dementia worldwide. Starting in most cases as “mild cognitive impairment,” or “senior moments,” or just plain forgetfulness, for an increasing number, it slowly progresses with diminishing mental agility and memory.
Dementia reaches the stage where one cannot look after oneself, or is unable to read, cook or shop. Dehydration occurs as one forgets to drink, along with incontinence, delusions, fear and anger, severe apathy. Eventually the dementia victim needs care not only when awake, but also attention when asleep.
Alois Alzheimer performed an autopsy in 1906 on a dementia victim whose brain disclosed several unusual features (bear with me on this): it was a third smaller than normal; many neuron nerve cells had vanished, and almost a third of the remaining cells had been “invaded” by “dense, knotty bundles” caused by a buildup of a protein called tau. These knotty bundles were most prevalent in the gray matter which forms the thin, outer layer of the brain’s cerebral cortex. Another protein, now known as beta-amyloid, collected between the neurons and disrupted their functioning.
In all the years since, science cannot even be sure whether those autopsy findings disclose the cause, or the effect, of dementia.
Since that discovery, dementia’s surge is seen as collateral damage from humanity’s triumph of longer lifespans. Its incidence increases with age, usually after 60 years, to where one-third to half of 85 year-olds have it. Cases of dementia increasingly have been been found, however, in people 40 years old and younger. And after decades of research, there is no cure and no vaccine.
Alzheimer’s disease is the most common form of dementia, accounting for 60% to 80% of cases, but in all dementia’s forms, it disproportionately affects women. And little of it is understood beyond its increasing prevalence with age.
Dementia used to be called “senility.” As of now, 6 million have been diagnosed with Alzheimer’s in the U.S. And while two-thirds of people with Alzheimer’s in the U.S. are women, almost that same fraction of those who care for Alzheimer’s sufferers are women as well. These seemingly manageable numbers are anything but. No place can be found that is equipped to deal with it. The Economist tells us that China (including Taiwan), has more people with dementia than any other nation, followed by India, the U.S., the E.U. and Japan.
In 2018, the average, lifetime cost of care for an American with dementia is about $350,000, and 70% of that is the cost of family care at home. And virtually everywhere, with the possible exception of Japan (more on Japan in a moment), there are far too few people able, or even willing, to care for someone afflicted with dementia.
The burden of caring falls, in an often shattering way, on an unprepared family member, or even a friend or neighbor, often for a demented person whose family has simply bailed out. This is why nursing homes are often ill-equipped repositories of demented residents. Also shocking: the increasing number of demented people left abandoned in wheel chairs in the lobbies of our social service centers, a frequent, little known occurrence right here in Suffolk County.
One of a number of pioneering advocacy groups, Alzheimer’s Disease International, offers a convincing theory of why dementia surges in its impact: most of us, including most medical practitioners, see it as a natural part of the aging process, and that one in five of us see it as just plain bad luck. The 2019 annual report of ADI put it this way: “When a person has dementia, the condition takes over as the main descriptor of who they are. The stigma cancels the individual’s personality or personal history.” Too many of us, they observe, would rather look the other way.
But all is not lost. In some societies, such as Japan, where dementia is more prevalent in an increasingly aging population, care at home is being given program support. In addition to visits from professional caregivers, family members are making life for their dementia sufferers more “dementia-friendly,” with millions of families given training as “dementia supporters.” Is this the result for the traditional, continuing respect for the aged in Japanese society, so absent in our Western “civilization,” where a culture of death thrives for the aged as well as the unborn?
Similar support is offered here on the North Fork at the Peconic Bay Medical Center’s Caregivers Center (tel: 631-548-6259). Reaching out for this kind of help is a big step in itself. Often a caregiver doesn’t realize he or she actually is a caregiver until long-involved in the role. As a caregiver assumes more and more responsibility for a demented family member or friend, it becomes at some point an overwhelming struggle.
A 15-minute memory screening can indicate if someone needs a full evaluation from a doctor. A screening includes questions to measure memory, language, thinking skills and other intellectual functions, with results given at the screening’s end. Here’s more positive news: the Alzheimer’s Foundation of America offers this kind of screening free to Suffolk County veterans, as well as their families, for the rest of this month of November, on Mondays, Wednesday’s and Fridays (call 866-232-8484).
Some hope can also be found with “reminiscence therapy,” where the demented are helped to remember people, places and events through sight, touch, taste, smell or sound. It can have profound impact. And music has had near miraculous results.
Coming as well to the forefront is a much anticipated treatment that will center around combinations of drugs addressing different aspects of the brain. This will include “genome editing,” which we’ll discuss another time.
And to reduce the risk of developing dementia, at least it is known that lifestyle plays as much a part as it does for reducing the risk of cancer, heart disease and diabetes. It sounds almost cliche, but regular physical activity, attention to diet, minimal alcohol and no smoking, keeping an active mind with reading and social contacts, and adequate sleep, all address the major risk factors for getting dementia. Other risk factors to address: head injuries in mid-life and exposure to air pollution in old age, and high blood pressure.
Regarding the sleep factor, a pivotal body of new research, found in Dr.Matthew Walker’s fascinating book, “Why We Sleep,” proves how adequate sleep protects us from dementia, and debunks the foolish self-confidence of those who insist they can do with less than eight hours sleep. Indeed, inadequate sleep through early life significantly raises the risk of dementia in later life.
One final point: care for those with dementia is a labor-intensive task. To ease the caregiver’s enormous burden, and to attract more to the occupation of such caregiving, we must rethink that a caregiver is no longer to be regarded and labeled as “unskilled.” This will be a first step to address the inexorable rise in cases – finding enough people willing to enter the dementia caregiver’s occupation.
Consider the quite readable and helpful book, “Extra Time: Ten Lessons for an Aging World,” by Camilla Cavendish, who describes dementia care as “undervalued, emotionally draining and physically exhausting. Yet it is, in my view, highly skilled. It requires enormous maturity and resilience; deep wells of kindness, too.” So, among other things, when each of us addresses dementia’s identified lifestyle risks, encourages and supports caregivers, and contributes to the non-profit, dementia-advocacy groups, there is hope after all.
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