One year ago, while I was celebrating my graduation from college, it was announced to me that my grandmother was diagnosed with dementia. “The signs were there if you knew her,” my mother recently said, “but she was still hiding it.” I realized the truth when she said something repeatedly to me in Creole while I stared back at her, bewildered.
“Manman,” I stammered in English, “I don’t speak Creole.” But still she persisted until my boyfriend finally realized what she was saying. I don’t remember what it is now, but I think she wanted me to sit up straight and, once I did, she left me alone. She returned to Haiti to spend half a year in the comfort of her home, flanked by care, and the two of us rarely communicated despite the fact that our days were punctuated by her daily calls.
She returned to the United States and her condition rapidly deteriorated. She was no longer able to bathe herself and was incontinent. Still active, my grandmother moves rapidly from room to room to lift things and move them to new places – pillows to the table, shoes to the desk. When she does not like food she’s eating, she no longer possesses the capacity to remember to politely swallow or spit it out onto a napkin, but will simply let chewed pieces dribble down her chin onto the plate with the rest of her unchewed food. My mother, her daughter-in-law, showed her a picture in their bedroom of her and my father, her son.
“Who’s that?” my mother asked.
“Oh, that’s Judith and the guy,” my grandmother replied.
“That’s your son,” my mother responded. My grandmother laughed merrily, off to another corner of her mind.
Dementia is the loss of brain function, and is generally irreversible. While it normally is diagnosed in adults over the age of 60, dementia can also be brought on by various medical conditions, like Huntington’s disease and Parkinson’s disease. It affects language, memory, and perception, among other cognitive functions.
There are four main forms, though there is a lot of mixing: Alzheimer's disease, vascular dementia, lewy-body and frontotemporal dementia. Alzheimer's disease and vascular dementia are believed to be the most common forms of the disease. Both end up changing the brain's blood flow. Lewy-body dementia is characterized by memory problems, hallucinations, and emotional issues. Frontotemporal dementia, which is caused by damage to the frontal cortex, affects language.
Why Is This Important?
Due to advances in medicine, people are living longer lives than ever before. Populations, particularly in developed nations, are aging as younger generations decline to have the same amount of children that their parents or grandparents had. This extension of life has given rise to non-communicable diseases, such as dementia. The World Health Organization (WHO) estimates that 35.6 million people lived with dementia in 2010, costing $604 billion worldwide. That number is set to swell to 65.7 million in 2030, 81.1 million in 2040, and 115.4 million in 2050, with costs far outpacing that number. There is a new case of dementia every four seconds.
And we are not as equipped as we should be.
Dementia affects everyone – not simply the people who have been diagnosed with its various types, but also their caregivers and the families. Somehow, despite the fact that nearly everyone has been or will be touched by dementia in their lives, there is a perceptible lack of awareness in most countries, which can affect everyone in negative ways.
WHO has named dementia a public health priority. Though it has indeed gotten better, there is a considerable lack of coordination between caretakers and society, and a great amount of stigmatization. Says Jacob Roy, the Chairman of Alzheimer's Disease International, "In many countries, there is a negative attitude toward aging, which certainly has a negative influence on dementia. [There is a] stigma […] mainly due to the general feeling that it is a mental illness. There is a general reluctance to accept this as a physical disease. So people try to cover up, prevent taking those affected for medical help. [There is] neglect and abuse in some cases."
The policy problem is one that affects people with dementia, certainly, but also their caretakers. Dementia is a costly disease, costing a global total of $604 billion and, with no cure or method of delaying symptoms, the cost of that is mostly in informal care provided by family members. In fact, some low- and middle-income countries (LMIC) have created laws surrounding the care of elderly relatives, because of dementia.
Such laws are probably unlikely to help, says Martin Prince, the professor of Epidemiological Psychiatry at the Institute of Psychiatry, Kings College London and the Co-Director of the new KHP/LSHTM Centre for Global Mental Health. "What we've come to understand is that intervention not helpful without system of assisted continuing care," he says. "More effective are disability benefits, universal pension schemes, and [caregiver] benefits."
Many high-income countries have some policies in place addressing research and aid for caregivers. Scandinavian countries and Japan tend to lead the way in these regards. The United States has policies in place as well in 21 states, which is commendable for the selected states but remains to be addressed in the others, which certainly have residents afflicted with dementia as well.
Much of the resistance for allocating aid for caregivers and sufferers of dementia is that it is certainly economically taxing. With the slouching global economy and much of the increase of dementia incidences occurring in LMIC, it is difficult for governments to envision the allocation of so many funds for any one particular group – and where will the funding come from? South Korea has a plan for funding as well as assistance, which is a positive step, even with its problems: "[The] Republic of Korea clearly outlines its funding strategy. An increase in health insurance premiums for everyone over the age of 20 will generate funds for services for people over the age of 65 with an ageing-related illness such as dementia. However, it is estimated that only 4% of the older population will be able to receive this government assistance due to a cap on participation rates, while 8.3% of the same population have dementia."
At least South Korea has the semblance of a plan. Many LMIC turn the other way, as they lack a social welfare policy. Caregivers often are forced to give up their own source of income in these multi-generational households as they devote increased amounts of their energy to taking care of the older person affected with dementia and their own children. This obviously creates an additional strain on familial resources.
One might wonder if the lack of concern stems at least slightly from the fact that the majority of those affected are women. Indeed, a majority of the sufferers from dementia are women. And, while that may be, in part, due to the fact that women tend to have longer lifespans, that is probably not the whole picture. In fact, caregivers are most often women as well, and researchers have noted that the stress, anxiety, social isolation, and depression as a result of the task can lead to dementia for themselves.
The wide lack of aid to caregivers helps no one. As demographics shift and younger generations grow increasingly unlikely to want to take care of their parents and grandparents into their old age, the burden of taking care of people with dementia will increasingly fall to governments, unless we make it so.
"There is a misconception," Prince says, "that [LMIC] can't afford these things. But it needn't necessarily be a huge amount of money. The political intention is more important."
Though Alzheimer's disease exists at such a high rate, research into the matter is limited. In fact, the a study cited by the WHO report is damning: "The societal costs of dementia (£23 billion) almost matched those of cancer (£12 billion), heart disease (£8 billion), and stroke (£5 billion) combined. However, for every £1 million in costs arising from the disease, £129,269 was spent on cancer research, £73,153 on heart disease research, and £4,883 on dementia research." The italics emphasis is mine, but the words are certainly jarring. The WHO report also says that it can be extrapolated that one new person is affected with dementia every four seconds. Nearly every person that you or I know can name someone who has been touched by dementia, from the development of the disease in a family friend, neighbor, or relative.
The reason for this discrepancy can probably be found, in large part, from ageism. Many people believe that nothing can be done on the matter, or that it is part of aging. After all, as several studies have shown, the primary risk factor for dementia is age. At least one doctor has spoken out publicly on the matter, saying that dementia was, in fact, just a symptom of old age. (Australia's Dr. Spektor did not respond to our inquiries for a statement.)
Andrius Baskys, the director of the Alzheimer’s Disease Prevention and Treatment Center in Orange, California and a psychiatrist at the Tyler Village Wellness and Recovery Clinic in Riverside, California, is more measured in his assessment of the debate. "There is a lot of arguing going on if anyone who will live long enough will develop dementia of some sort," he says. "I do not know the answer to that. It is true that some people with certain genetic predisposition tend to develop Alzheimer’s disease rather early, in their 60s, 70s. Clearly there is something else."
Indeed a significant portion of dementia cases stem from people who are younger than 65. Their problems as a result of such a condition are great, and specific: many are still in the workforce or have just recently left, they may have children in universities or still in the home, they may not be eligible yet for any or some old-age pensions. However, their presence has been an immense boost to dementia advocacy groups – their enrollment as spokespeople and involvement in the governance of their organizations has led to positive policy developments for the group. Perhaps just as importantly, their faces mitigate the ageism that dementia faces regularly.