- Dementia is an umbrella term that describes several chronic and progressive diseases of the mind
- Dementia becomes progressively more common as we get older but it isn’t an integral part of the aging process
- Everyone’s experience with dementia is different: from changes in behavior and reasoning to paranoia and hallucinations, etc.
- Women are more susceptible to develop dementia than men and the symptoms that women endure are generally also more severe
- With the advent of baby boomers, by the year 2050, the number of people with Alzheimer’s is estimated to increase from six million to fourteen million
- Cognitive and psychiatric symptoms produce the biggest challenges for dementia patients and their caregivers
- Dementia caregivers should pay attention to safety issues in the patients’ daily activities such as driving, cooking, wandering, etc.
The term “dementia”, in times past referred to as senility, derives from the Latin demens, meaning “out of one’s mind”. It is a syndrome, an umbrella term that describes several chronic and progressive diseases of the mind, of which Alzheimer’s is the most prevalent.
Dementia is also used to describe a number of symptoms related to a gradual degeneration in memory and at least one other cognitive faculty severe enough to cause dysfunctions in a person’s ability to deal with their activities of daily living (ADLs).
Clinically, and in its broadest sense, dementia is defined by inference of “irreversible brain pathology”. But however else academia has defined it, it clearly looms today as a public health crisis.
Dementia is rare in individuals under age 60, and although it becomes progressively more common as we get older, it is not an integral part of the aging process.
Trauma to the brain, strokes, vascular issues, brain tumors, or a disease like Alzheimer’s, can cause dementia. The adverse changes in the chemistry and structure of brain cells that produce most types of dementia are degenerative, meaning they cannot be halted or reversed. For the most part however, their progression can be slowed down with treatments comprising medications, healthy nutrition, and lifestyles that include physical and mental stimulation, and regular and plentiful sleep.
In the early stages, damaged cells in the brain cause difficulties in remembering, learning and communicating. In time, as the dementia evolves, it causes difficulties in people caring for themselves, creating burdens for other family members and caregivers.
Although dementia is probably as old as mankind itself, it was in the nineteenth and early twentieth centuries that our current understanding of dementia was formed. The early 1900’s saw the first awareness of the “cognitive paradigm”, i.e. the thesis that dementia comprised an irreversible degeneration of intellectual functions. Beyond that, each historical period has emphasized different symptoms and explanations.
The early deliberations revolved around whether the cognitive failure and behavioral changes of dementia were simply part of the aging process.
The year 1906 then saw a major milestone in the development of clinical Alzheimer in what Dr. Alois Alzheimer described as a “peculiar disease”. A year later, the German physician first linked symptoms in a 51-year old woman to microscopic changes in her brain’s anatomy. In her brain when autopsied, he observed noticeable shrinkage and abnormal deposits around brain nerve cells known as neurons.
It wasn’t until 1968 that researchers developed reliable means to measure cognitive decline in aging seniors. The Alzheimer’s Association was then formed in 1980, and another milestone was discovered in 1986, involving the Tau Protein, a key factor in nerve cell degeneration.
Throughout those and subsequent years, clinical research was making non-stop advances, particularly in the fields of genetics, diagnostics, biomarkers, neuroimaging, and pharmacology.
Although dementia is commonly associated with memory loss, everyone’s experience with the syndrome in reality is different. Dementia impacts sufferers in a gamut of other ways including changes in behavior and reasoning, inability to articulate thoughts or sentiments, confusion, disorientation, paranoia, hallucinations, and in more unique ways.
Another significant dementia fact debunks the myth that it a phenomenon that exists only in the Western world. Dementia is actually a global issue that is projected to incur its largest growth over the next decades in India, China and developing countries of Africa.
And yet one other misconception about this brain syndrome is that it always fully incapacitates those it impacts. In fact, people with dementia have been known to adapt and learn to live well with newly developed strategies and lifestyles.
There are yet more myths about dementia, though less significant.
In addition, it is a well-documented fact that women carry the largest part of the dementia burden. Dementia impacts women disproportionately in all parts of the world, and not only are women more susceptible to develop dementia than men, but the symptoms that women endure are generally also more severe. Besides, when it comes to caring for patients with dementia, it is the women who do the heavy lifting: the caregiving workforce associated with dementia worldwide consists predominantly of the weaker gender.
- The number of people with dementia across the globe in 2016 is estimated at close to 50 million, and it is forecast to grow to 75 million by 2030, and to more than triple by 2050 (132 million)
- By 2050, the expenditures incurred by Medicare and Medicaid on dementia will be in excess of $1 trillion
- There are 10 million new cases of dementia worldwide each year, i.e. one new case every 3.2 seconds
- 1.1% of global Gross National Product was expended on dementia in 2015; this breaks down to 20% for medical expenses, 40% for social programs, and another 40% for care
- If Global expenditures on dementia were a country, its economy would be the 18th largest in the world
- One third of seniors in the United States die of dementia
- Individuals with Type II diabetes are twice as susceptible to developing dementia as others, and those on daily insulin therapy are 4 times as likely
- Most people currently living with dementia have not received a formal diagnosis
- There are over 100 types of dementia, although Alzheimer’s disease accounts to between 60 and 80% of those
- Of the near eight million people with dementia in the U.S., almost six million have Alzheimer’s
- The 2016 Federal expenditure on Alzheimer’s and the other dementias aggregates to $236 billion
- In 2015, more than 15 million people provided an estimated 18 billion hours of caregiving for people with dementia
- Alzheimer’s is the sixth cause of death in the U.S. It kills more than breast and prostate cancer combined
The prevalence of those aged 60 and over ranges between 5 and 7% of the world population, with a higher (8.5%) occurrence in Latin American countries, and a lower (2% to 4%) prevalence in sub-Saharan regions of Africa. Further, almost 60% of people with dementia reside in countries with low and middle incomes, a statistic that is expected to rise to over 70% by the year 2050.
In the United States, more than 95% of all dementia patients are of age 65 and over, and one in nine people 65 or over has Alzheimer’s. By the year 2050, a person in the U.S. will acquire the disease every 33 seconds.
With the advent of baby boomers currently getting into the Medicare age in large numbers, by the year 2050, the number of people with Alzheimer’s is estimated to increase from nearly six million to nearly fourteen million (some studies suggest that the 2050 figure may go as high as 16 million).
Most forms of dementia disrupt what are known as cognitive symptoms such as memory, communication, multi-step thought processes, reasoning and judgement. The degree to which the disruption occurs varies, in part due to how advanced the disorder is.
Dementia patients may experience other “psychiatric symptoms” such as irritability, anxiety, depression, agitation, sleeplessness, compulsiveness, paranoia, pacing, shredding small bits of paper or tissue, delusions and hallucination.
Combined, these cognitive and psychiatric symptoms produce the biggest challenges that the dementia syndrome exacts, not only on those directly affected, but almost equally on those who care for them.
In the early stages, many people with dementia can still function independently, including holding jobs, driving, and remaining socially active. Difficulties begin to arise when it comes to balancing a household budget, planning and organizing, and managing medications. Cues and pointers will then be needed to help the dementia-driven individual stay as independent as possible for the longest duration.
The middle stages are known to last the longest, often for many years, and they require an incrementally greater level of care and support. In those stages, communication and the conduct of routine living activities become all the more difficult, and the caregivers can expect good days and days that are not as good.
The late stages may last for weeks or prolong to several years, depending mostly on the individual’s constitution, genes, and various other factors. In those stages, individuals with dementia fully lose their ability to communicate, although studies have shown that in some cases a barely discernable connection can be maintained between dementia patients and their caregivers.
Individuals in the later stages of dementia have significant problems eating and swallowing and require continuous assistance with incontinence and ambulating. They will also be particularly susceptible to infections, most notably pneumonia.
Because dementias like Alzheimer’s can last for years, they are not commonly described as terminal, although in the end that is precisely what they are: terminal.
The late stages of dementia cause the biggest challenges for the patients’ caregivers, if only because of the near total breakdown in communication. When people with dementia can’t communicate their needs or feelings, their caregivers are left with the unenviable task of deciphering signs and reactions to stimuli.
Providing emotional support also becomes all that much more challenging since caregivers can’t convey personal and comforting sentiments when the patient doesn’t even know who they are.
Caregivers in late stage dementia can often only resort to giving comfort through sensory connections, like a soothing touch, a gentle massage, or putting on calming music.
Researchers tell us however that even for those kinds of connections, sensory changes occur, and there is a marked decline in the functional capacity of the five senses in late stage dementia patients.
Because many people with dementia go undiagnosed for long periods of time, they often misconstrue their abilities to carry on with daily life unimpeded. They may thus expose themselves and others to various hazards. Besides, safety issues abound by mere fact of patients with dementia experiencing diminished decision-making and judgement abilities.
A list of the specific safety issues that the caregivers of people with dementia have to oversee diligently would include:
Any person with dementia will in time reach a point in the progression of their impairment where those caring for them should reconsider the person’s ability to drive around safely.
Not only will people with dementia often not remember to take their meds in a timely fashion, but they will also run the risk of taking the wrong meds or doses.
This is an activity that brims with concerns when it comes to the distractibility, forgetfulness and diminished ability to follow directions and common sense measures.
The risks of falls and injuries like broken bones and concussions are exacerbated in people with dementia who often misjudge their abilities or have an exaggerated view of what they can safely do.
Wandering, perhaps second only to short term memory loss, could well be viewed as up there with the most ardent concerns for the caregivers of dementia patients. Restlessness, irritability, sleeplessness, the urge to go to the bathroom, and the craving for food or water are only some of the precursors to wandering in a person with dementia. Further, it has been found that when dementia-driven wanderers are not found within the first 12 hours, one out of every 14 individuals do not survive.
Good Day and Bad Day
At the golden age of 68, Margaret found herself living alone in the home in which she raised her family. Her husband had died, and her two children, Frank and Mary Ann, lived nearby with their own families. Margaret enjoyed baking, tending to her garden, and caring for her cat, Toby. It seemed to all in the family that she had everything she needed, including the ability to come and go as she pleased.
That’s when Alzheimer’s reared its ugly head.
Seven years later, Margaret’s life had taken several drastic turns to the worst. Her son Frank lamented that she sadly blew right past the early and middle stages of dementia. “Before we knew it,” he grumbled, “she had gone breathlessly from forgetfulness and a little confusion to full-blown disorientation and a total inability to communicate.”
Here is how her daughter Mary Ann describes her Mom’s later tussle with Alzheimer’s:
“Monday was awful, though Tuesday and Wednesday were relatively calm,” she observed matter-of-factly as though reciting from a children’s book. She then added, “On Monday, who could tell whether her extreme agitation was because she was in pain or something else?”
Not knowing what the heck was going on
Frank then pitched in. “We had heard and read a lot about this ‘good day bad day’ pattern in people with dementia, but up to recently, Mom’s decline had been relatively even and predictable. And as hard as we tried, we could never discern the specific triggers that cause her symptoms to change drastically from one day to the next, and then back again, in an erratic sequence.”
“This can drive you nuts,” Mary Ann exclaimed, “the not knowing what the heck was going on.” She then continued her with her thoughts. “At one point, we charted everything that went on in her life on a daily basis: her food intake, number of minutes walking, her sleep and, above all, her medications. We even alternated one particularly medication, giving it to her on three or four successive days, then keeping it out of her regimen for more days.”
“All to no avail,” continued Frank, his face contorted with a sad type of resignation. “We just couldn’t draw a line between any of these givens. Her good and bad days remained as sporadic as ever.”
Even the Specialists got stomped
“Yes,” Mary Ann carried on. “We attended a webinar given by this specialist on dementia. He seemed to contend that sleep was somehow involved, that a regular pattern of good sleep might be the common denominator for these behavioral fluctuations. And just when we thought we had an authoritative opinion on the subject, he went on to say that studies had not been able to corroborate his thesis. Great!”
“Another physician asked us to document our assessments of the daily changes we observed in Mom’s behavior. He said that despite the fact that we hadn’t been able to put our finger on any identifiable causes for these fluctuations, he said that as a clinician, he needed the information in order to be helpful.”
“So, we did,” Frank interjected. “Once again, we wrote down everything that went on in Margaret’s erratic behavior and submitted our findings as he had requested. And once again, there was no finding that we could hang our coat on.”
“By then,” Mary Ann volunteered, “we were accustomed to being disappointed. We resigned ourselves to the task of caregiving on a day by day basis. . . not the easiest way to manage Mom’s illness.”
By then Frank seemed at the end of his patience. “Even our specialists got stumped,” he commiserated.