Several close family members developed Alzheimer’s or another form of dementia before they died. They all required institutional care. Alzheimer’s is an insidious disease that robs the victims of the person they were. It robs them of the people they loved as they forget the names and faces of family and friends. It robs them of their dignity as they can no longer care for themselves and must be fed, bathed, clothed and toileted like a toddler. It sometimes robs them of their legacy, as their care is so costly they have to bankrupt themselves before qualifying for Medicaid coverage.
According to the Alzheimer’s Association 6 million Americans are living with Alzheimer’s disease. This figure is expected to more than double to 13 million by 2050. About one-third of seniors will die with dementia. The cost of care is $345 billion but will nearly triple to $1 trillion by 2050.
In the past 18 months several new Alzheimer’s drugs were approved by the FDA. They provide little in the way of benefits but cost a lot. These drugs are also fraught with risks, like brain swelling, brain bleeding, etc. This from the Wall Street Journal:
A year and a half of treatment with the new Alzheimer’s drugs has been shown to reduce the chance of progression to mild stage dementia by about 10%. This benefit comes with notable risks, including small patches of brain bleeding and swelling, which can cause falls and confusion and may require stopping the drug. And there are other barriers. The new Alzheimer’s therapies are very expensive—one year of lecanemab therapy is priced at $26,500. They are difficult to deliver, require an extensive work-up to determine eligibility and involve intensive monitoring for side effects. As many as 8 million Americans are estimated to be living with mild cognitive impairment, but only about 8% to 17.4% will meet all the criteria to take one of these drugs, according to a study published last month in the journal Neurology.
The Wall Street Journal raises a thorny dilemma: How long do you want to live with Alzheimer’s Disease once you’ve advanced to the point you no longer have command of your faculties? Medical science may be able to slow the progression but currently it cannot be stopped, nor can it be reversed. A physician who treats Alzheimer’s explains the scenario to the Wall Street Journal using a patient as an anecdote:
Like many patients, Robert defined his quality of life by his ability to care for himself, in terms of eating, dressing and using the toilet. I understand why. “I’ll never send him to an adult daycare,” “I’d rather die than live in a nursing home”—these pronouncements are all too common, emotionally charged reactions to America’s disorganized, underfunded and understaffed system of dementia care.
I too have heard numerous people say they do not want to ever live in a vegetative state. Few will in a position to act on their preferences other than state them to the people likely to make decisions for them if their mind goes.
As Robert develops problems with spatial memory, for instance, his smartphone can guide him home on his walks around Philadelphia. He may require the assistance of his wife or an aide to continue volunteering. With these accommodations, his feeling of what it is like to be himself may be largely unaffected.
As some point the hypothetical patient, Robert may lose his sense of self and his caregiver lose the sense of who he once was.
The decision whether to slow this disease is truly an interdependent decision.
Robert reflected on the role of his wife in the decision whether to stop treatment: “I guess she’ll decide.” One factor that will guide her is her perception of his mind, her answer to the question “What is it like to be Robert?” “For now,” she reflected, “Robert is Robert.” He agrees.
Patients and their families may have differing ideas. One wife of a patient said she could still sense joy in her partner, even though he was no longer the man she married. On the other hand, a daughter felt her disabled mother was far removed from the mother she knew. She discontinued therapy and enrolled her mother in hospice care.
If medical science can slow dementia but not stop it, this raises some an ethical question. Can the country afford Alzheimer’s patients living twice as long once they enter a nursing home? Do patients want to live twice as long after they are robbed of who they were. My questions are hypothetical considering the current crop of medications barely slows the disease progression (if at all) and still costs a fortune.