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Keeping Older People "In Line": Caregiver Attitudes Towards Alzheimer's Disease

by — Last updated: 2015-10-11 in Mental Health

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One of the things you notice in nursing homes that have Alzheimer's floors and non-Alzheimer's floors is that the mere hint of a dementia diagnosis induces immediate compliance with orders. Management by fear isn't optimal. There are better ways.

I spent the past two weeks as a resident in a nursing home. I'm a little young to be in senior care, but a few months ago I got a little knick on my foot. I had to wade through some sewage-infested flood waters after a rainstorm. The wound got seriously infected, I was in and out of the hospital for two months, and I was sent to the nursing home to recover. I was by far the youngest resident of the home, and I'm sixty.

This was no ordinary nursing home. Residents included a retired three-star general, a former member of Parliament, and a brain surgeon. All of us were on the same floor in a beautiful building and all of us received restaurant-quality food, anything we wanted from a menu with 50 items. Patients with Alzheimer's were put on a different floor with a very different daily regimen. However, even retired members of parliament and generals do what the nurse wants when there is even a hint they might be written up as suffering with Alzheimer's.

The New Threat Of An Alzheimer's Diagnosis

Elderly people in general tend to have considerable, rational fear of the "A word". After all, a diagnosis of Alzheimer's means a loss of personal independence. Diagnosis leads to loss of the legal right to run one's own life, and the disease itself, although it can be slowed down in some cases, cannot be cured and always leads to an unpleasant, slow death.
 
Making the situation worse, from the perspective of fearing old age, is a new diagnostic category of "mild cognitive impairment," or pre-Alzheimer's. The criteria for being diagnosed with pre-Alzheimer's are:
  • No obvious signs of full-fledged dementia, with
  • Continuing ability to carry out everyday activities, but with
  • Objective evidence from a neurological exam or psychological test of changes in the ability to pay attention, or language skills, or eye-hand coordination, or "executive function," making good decisions, along with
  • Expression of concern from a family member or a caregiver or the patient that something is wrong with mental function.

How The Threat Of A Pre-Alzheimer's Diagnosis Plays Out In A Nursing Home

It's that last criterion that gives caregivers a way to influence outcomes for patients in potentially insidious ways. For instance, I needed to see a surgeon (to repair damage to my foot caused by the infection) who was slightly outside the usual range of the nursing home driver. The facility costs $10,000 a month and charges up to $500 for a trip to the doctor off-campus, so I protested. I thought for all those thousands of dollars, maybe they could drive a literal extra mile for me.
 
The services coordinator told me "Oh, you don't remember telling us you didn't really want to see your doctor?" as in, "Do you want to get written up for a pre-Alzheimer's evaluation?" 
 
My response, however, was that I was in no way suffering dementia and "Although I could give you a piece of my mind and have plenty left over, my primary concern is to get to my doctor and I will call the state Department of Aging and Disability Services if my condition continues to get worse and you don't send me there." I wound up calling the state's nursing home watch dogs, giving a two-hour interview to explain myself, and getting my ride to the doctor. Nobody referred me for a pre-Alzheimer's evaluation. However, there really is a better way to deal with cranky old people like me.
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