Creating a New Vision for Alzheimer's Care
MADISON - To demonstrate the struggles and embarrassment inherent to Alzheimer's disease, Dr. Cameron Camp, director of Hearthstone Alzheimer's Care and a presenter at the University of Wisconsin School of Medicine and Public Health's "Alzheimer's Disease: Annual Update," approached a conference attendee.
He asked the man to imagine that Dr. Camp answered a question the man had asked, then immediately erased his memory of the previous five minutes. What would the man do next? Ask Dr. Camp the same question, of course, because he had no memory of the response.
Now what if Dr. Camp chastised him by saying angrily, "I just answered that question a moment ago. What's your problem?"
The man would be humiliated, perhaps, and certainly distrustful.
"You have a tough decision to make," Dr. Camp said. "You have to determine whether he is a liar or not. That's what Alzheimer's disease patients are dealing with. It's scary as hell. This is what it's like to live it."
Recognizing their deficits and, more importantly, abilities is the key element in providing positive, supportive care to Alzheimer's patients, and Dr. Camp's work at Hearthstone is making impressive progress in refining caregiver technique without reliance on medication.
"It is not enough to be right. We must also be effective," he said. "It's very easy to say, ‘If they had only done what we'd told them to do...' That doesn't help them. We have to create new standards of care and new expectations."
Improving on the all-too-accepted philosophy of care - "Here's a bullet. Bite it. There's nothing we can do. They are only going to get worse." - is the focal point of Dr. Camp's work. At the Annual Update, he challenged his fellow care providers.
"The way we think about Alzheimer's disease and the challenging behaviors behind it determines the quality of care for people with Alzheimer's disease," he said. "We need to create a different vision."
That new vision reveals identifying what an Alzheimer's patient can do and catering the care environment to it. Dr. Camp invoked a familiar example.
Short- and medium-term memory problems often instill patients with a blend of hostility and paranoia. One of Dr. Camp's patients at Hearthstone complained that her daughter never visited because she no longer cared, though the daughter visited daily. A logical response would be to correct her by saying her daughter had just stopped by, but that only injects the interaction with suspicion and antagonism. Dr. Camp believes there is a better way.
At Hearthstone, staff encourage patients to create a visitors book that they keep in a consistent, comfortable spot chosen by the patient. When a question of fact like a daughter's visit arises, caregivers don't contradict the patient. They suggest checking out the visitor's book, which has the date and time of the visit written in the daughter's familiar hand.
The truth is discovered collaboratively, and because she partnered with the caregiver, the patient doesn't resent being proven wrong.
"If you can't store the information internally, you store it externally," Dr. Camp said. "We have to give a person practice learning the procedure of how to retrieve the information from the external source."
The success of such measures underscores a fact often neglected in Alzheimer's patients. They can learn.
"People with dementia are learning all the time, if we look for it," he said. "They can learn locations. How do we know? Put somebody else in their chairs at lunch. They don't like it. They had to learn that chair location after dementia set in. We can see it or we can not see it."
Dr. Camp supplied concrete examples of effective approaches.
- Don't ask open-ended questions. Narrow the options. Rather than asking what patients want to wear, ask them if they would like to wear the red dress or the blue dress, and show them the dress while asking.
- Use procedures such as the visitors book that patients can remember and trust.
- Employ visual cues. At dinner, Alzheimer's patients struggle when asked what they want to eat but thrive when presented with the multiple options of a buffet.
Most importantly, subscribe to a caregiver philosophy heavy on empathy and understanding.
"We assume a person with Alzheimer's disease is a normal person with cognitive deficits," Dr. Camp concluded. "This person doesn't have to feel she is a prisoner. This is a choice we as caregivers make."
Date Published: 11/12/2009