Choices and dilemmas in dementia care

Larissa MacFarquhar discusses treatment approaches for people in the late stages of dementia in the October 8, 2018, issue of The New Yorker–The Comforting Fictions of Dementia Care.  It is not unusual for late-stage dementia patients to have delusions (the belief in something that is not real) or hallucinations (false sensory perceptions of objects or events). How caregivers might respond to these and related dementia problems is the subject of MacFarquhar’s article.

There are proponents and opponents of various approaches to handling these delusions and hallucinations, and the undesired behaviors that occur in the later stages of dementia.  MacFarquhar describes one approach that focuses on changing the environment in which dementia patients live.  A facility near Cleveland, Ohio, creates surroundings similar to a stage production, with scenes that presumably make the dementia patient seem to be in a familiar place:

The large central room of the memory-care unit was designed to look like an old-fashioned American town square. There was a small fountain, surrounded by plants and a low stone wall; there were a couple of lampposts, and benches, tables, and chairs set about. The carpet was mottled with darker and lighter shades of green, to resemble grass growing and bending in different directions. Along the walls were the façades of what looked like clapboard houses, with wooden shutters and shingled pitched roofs and porches that extended into the room. Two long hallways, which led off from opposite sides of the central room, looked like streets in the same town, with more clapboard façades and porches on either side. These façades were not altogether fake: each front door opened onto a suite of small rooms—living room, bedroom, bathroom—that was a resident’s home.

Some of the porches had rocking chairs that you could sit in and watch people go by. Many of the residents were quite restless, and there was nowhere else to go, so people did walk by fairly often. Daylight came in through high windows just below the ceiling, and the ceiling itself consisted of bright light panels painted to look like a blue sky dotted with clouds. In the evening, as it began to grow dark outside, lights on the porches came on. Sometime later, the street lamps were lit; and finally, around eight o’clock, the ceiling sky was switched off, so that the unit came to look like a small-town street at night.

This illusion might be amplified, as it is at some dementia facilities, with “realistic vinyl baby dolls, along with diapers, bottles, and clothes” and other artificial scenes of everyday life that seem pleasing to some residents.  Another illusion idea is called Simulated Presence Therapy, 

which involved making a prerecorded audiotape to simulate one side of a phone conversation. A relative or someone close to the patient would put together an “asset inventory” of the patient’s cherished memories, anecdotes, and subjects of special interest; a chatty script was developed from the inventory, and a tape was recorded according to the script, with pauses every now and then to allow time for replies. When the tape was ready, the patient was given headphones to listen to it and told that they were talking to the person over the phone. Because patients’ memories were short, they could listen to the same tape over and over, even daily, and find it newly comforting each time. 

MacFarquhar also describes simulated bus stops, buses, video screens of passing scenery (see above picture), a beach, sounds of waves, and vintage or period rooms containing related artifacts.  She explains, 

All these fantasies are conceived of as a means of soothing the misery, panic, and rage that sometimes accompany dementia: to convey to people in later stages of the disease the impression that life is still as it was once, with children to take care of, and holidays at the seashore, and familiar homes to return to.

MacFarquhar relates anecdotal evidence that suggests these methods work better than physical restraints (generally prohibited now) or the use of antipsychotic medication, and they may help reduce or avoid many of the unpleasant or distressing situations that often accompany dementia.

The reader may marvel at the creativity of these approaches, but creativity doesn’t prove efficacy.  I have firsthand experience with trying to deal satisfactorily with the hallucinations and delusions that can affect dementia patients, even when living in a home environment.  After my mother’s death (three years before his own), my father (in the later stages of Alzheimer’s) often would report that he had just seen her, wondered where she went, or had just been talking to her.  As I have discussed in another post, I, at first, would explain that Mother had died.  This always resulted in disbelief and then sorrow in my father.  Very quickly, I decided that it was less cruel and disturbing to Dad (and to me) to deflect the questioning with “I don’t know” or “I’m sure she’ll be back soon,” and immediately direct Dad’s attention to some other topic or activity.  His grief reactions never occurred when I followed this process.

I learned later that my approach in such situations is suggested by the Alzheimer’s Association:

• Listen to what is troubling the person, and try to understand that reality. Then be reassuring, and let the person know you care.
• Don’t argue or try to convince.
• Offer a simple answer. Share your thoughts with the individual, but keep it simple. Don’t overwhelm the person with lengthy explanations or reasons.
• Switch the focus to another activity.

Some people in the medical community oppose lying to dementia patients as I did with my father.  But there is just as much deception with fake scenery, Simulated Presence Therapy, and the creation of other fantasies and illusions.

To make lying easier for some caregivers (it does not always come naturally), MacFarquhar mentions several euphemisms that have developed: “therapeutic fibbing,” “brief reassurances,” and “stepping into their reality.”  Other approaches she discusses include “reality orientation,” a form of relating and manipulating memories through improvisation and deception (a method developed by Penny Garner in England based on her caregiving with her mother),  and the “Memory Machine” process (read the article for more about this).

Garner’s methods have been severely criticized in England.  MacFarquhar devotes a lengthy section of her article to discussing the ethics of lying to dementia patients.  From my experience with my dad, I can say that he never seemed aware that he was told a lie if I said that my mother would probably be back in a few minutes or that I didn’t know where she was.  We would instantly start discussing something else and his thought about Mother would be forgotten.  Dad’s primary confusion about where Mother was occurred over the last two or so years of his life, beginning less than a year after her death.  During this time, he never exhibited paranoia, as some professionals in the field suggested could happen and lead to distrust between the patient and his caregivers. There was never a hint that Dad thought he was being lied to.

Would it have been better for him to experience the grief of her death multiple times every day for more than two years?  Perhaps it would not have been terrible for him, but telling him about a wrenching event–the death of his spouse of almost sixty years–over and over and watching his distress and unhappiness and grief from the news each time seems more like torture than love.  When choosing between torture and deceit, I chose deceit as the lesser evil, the most caring choice, no matter what some medical ethicists or philosophers may think about the matter.

I doubt that Dad ever gave any thought to what his life would be like during the late stages of dementia.  At least, he never indicated that he had thought seriously or deeply about the prospects.  He seemed to trust that his basic needs would be satisfied, and to think no more about the subject. In an advance directive, completed before the onset of his dementia, he chose not to have extraordinary medical procedures to prolong his life, but he said no more about death or dying after that.

In the last section of her essay, MacFarquhar describes a large village-like facility in Amsterdam for dementia patients.  It is organized much like a residential retirement community in the US, with many social activities and environments, both in-door and out, that may interest an older cohort in that country.  While it is a well-thought out and compassionate alternative to the traditional nursing home (see a 2014 article about the facility in The Atlantic here), the per-resident cost is more than twice the cost of nursing homes or “memory care” facilities in the US, with substantial underwriting by the Dutch government.  

According to an article about the Amsterdam facility at alzheimers.net , there is an average of about 2 residents for every staff member on duty around-the-clock.  Data on resident-to-staff ratios in “memory care” facilities in the US are hard to find, but my research suggests ratios 3.5 to 4 times greater than in the Amsterdam facility; i.e., 7 or 8 residents per staff member.  This figure is much greater in general nursing home facilities, which may maintain “memory care” units that are partitioned off from their general population.

MacFarquhar doesn’t explain how delusions and hallucinations are dealt with in the Amsterdam facility.  A reader might get the impression that if a dementia facility is designed correctly, its residents don’t experience such phenomena.  But if this were true, it would be an astonishing development in the treatment of dementia–one that the Alzheimer’s Association and geriatricians would be trumpeting far and wide.  

So we are each left to deal with dementia in family members and ourselves as best we can, given the financial limitations of our families and the lack of concern by our government.  But no matter how humane my treatment might be, or how excellent the facility, if I am afflicted with dementia, it remains my wish, based on how I define dignity for myself, not to live through its final stages anywhere.  I want to leave this world with my mind relatively intact, after an opportunity to wrap up my personal business and say my goodbyes to those I love.  I hope we all get our wishes, whatever they may be.