Becoming an Alzheimer’s Whisperer

Increasingly, nurses are confronted with patients diagnosed with Alzheimer’s disease (AD). These patients are seen across the healthcare continuum, in hospitals, clinics, homes, assisted living and skilled nursing facilities, and in physician’s offices. The reason for medical care may be a diagnosis other than AD, but the issues that challenge nurses are the difficult behaviors associated with Alzheimer’s.

In response to this need, we developed a program trademarked as “Becoming an Alzheimer’s Whisperer” to assist all levels of caregivers in responding to these behaviors in a gentle and loving manner.1,2

The approach is derived from the Theory of Retrogenesis, developed by Barry Reisberg, MD, a geriatric psychiatrist at New York University. The theory posits that the brain of the person with AD loses myelination in the reverse order that the brain was myelinated from birth.3,4 Understanding this theory allows nurses to arrive at strategies that are functionally and cognitively appropriate.


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Early-Stage AD

At the beginning of the early stage of Alzheimer’s the individual with the disease is functionally and cognitively at the level of an 11-year-old. Over the course of 2 to 4 years, he/she deteriorates to the level of a 5-year-old.

While nurses never treat a person in a child-like manner, knowledge of the patient’s cognitive and functional level allows communication to be simplified, expectations to be realistic and creative interventions to be employed.

For example, there is no expectation for a young person between the ages of 11 and 5 to manage her/his own medications or illness issues. Likewise, it is unrealistic to expect an adult who is functioning at this level to be able to do these things.

Lacking knowledge regarding a patient’s cognitive and functional level might lead nurses to conclude that patients in the early stage of AD are not interested in adhering to medical recommendations; the reality is that these patients lack the cognitive ability to be adherent.

So, how can nurses know whether patients are in the early stage of AD? The answer is that nurses must begin to routinely administer the Mini-Cog exam as a screening tool for every elderly person encountered within the healthcare system. The Mini-Cog does not diagnose Alzheimer’s or any other type of dementia but it does identify a cognitive problem and points to the need for further assessment.

Mid-Stage AD

In the middle, and longest, stage of AD the patient is functioning at a toddler level (between the cognitive ages of 4 and 2 years old). When arriving at understandings and interventions it helps to think, “If I saw this behavior in a toddler what would it mean and what would I do?”

Two other facts essential to caring for someone in the middle stage include: 1) the person with AD only has 5 minutes of short-term memory, related to the fact that the Hippocampus is broken and, 2) the person can only do one thing at a time. These two facts are amazingly helpful when dealing with challenging behaviors.

For instance, it is possible to “erase” a less than ideal verbal suggestion like “It is time for your shower” by walking away for 5 or more minutes and returning with a different approach such as “Your wife is coming to see you; let me help you get freshened up so you look and smell good for her.” It is possible to distract someone with food (Tootsie Roll Pops work wonders) while performing a painful procedure.

While the person with AD is doing something he/she enjoys, the nurse is able to perform a necessary nursing action.

Bathing Gently & Safely

Bathing a person with AD is frequently associated with such severe agitation and aggression that family and/or paid caregivers get hurt (hit, bitten, hair pulled and shoved). It is this aggression that leads many family caregivers to place their loved one in facility care. Likewise, it is this aggression that leads paid caregivers to seek other employment opportunities.

Let’s examine bathing in light of the Theory of Retrogenesis. Most caregivers shower elderly people, whether or not this was the elder’s preferred method of bathing. Generally we do not shower toddlers. The power of the spray on their faces is terrifying. Yet professional caregivers shower elders who are cognitively and functionally at the level of a toddler. Why? Because it seems easier to the caregiver and it is the “way we have always done it”.

There are so many other ways that someone can be bathed – standing up wrapped in a towel, sitting in a chair or on the toilet, or while in bed. It is possible to distract the attention away from bathing by engaging the person with AD in singing while he/she is bathed. It is possible to give the person a lollipop to suck on.

Additionally, caregivers need to make sure the bathroom is steamy hot, so hot that the caregiver is sweating. Why? The hypothalamus that controls our internal thermostat deteriorates as a result of AD and leads to a sense of unrelenting cold in those afflicted with the disease.


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Dealing with Repetition

Repetition is another challenging behavior seen in those with AD, one that drives nurses to distraction. First it is important to look at the nature of the repetition.

If the person is asking repeatedly, “When are we going to eat?” even if that person has just finished a hearty meal, the nurse needs to allow the individual to graze on finger food all day. Why? The hypothalamus also controls appetite and in the middle stage of AD, and since the no longer sends signals of fullness after eating, the person with AD can feel hungry all the time.

If the individual with AD gains weight from snacking, this is generally not a major concern because by the end stage of AD the hypothalamus will stop sending signals of hunger. At that point nurses are faced with how to get those with AD to eat. An effective strategy is to make food sweet by pouring chocolate or maple syrup or sugar over the food. This encourages eating and prevents, or at least slows down, a precipitous weight loss that frequently occurs in the last stage.

Repetition can take forms other than asking about food and can be dealt with by redirecting the individual to complete a repetitive task. Women will fold towels, sort utensils, sweep and perform other repetitive, productive, yet mindless activities. The current generation of men with AD will not engage in any repetitive activities viewed as “women’s work” but they will sort coins, nuts, bolts and screws and manipulate LEGO-like products.

Recognizing Pain

Pain is another important issue to be examined in light of the Theory of Retrogenesis. Toddlers cannot say they are in pain; they act it out. Likewise, elders with AD who are functioning at a toddler level cannot say they are in pain. They act it out by hitting, biting and kicking when interventions are performed that increase their pain. They may also stop eating and refuse to be bathed.

If a patient is screaming out, “I am in pain!” nurses need to pay attention. Unfortunately, we do not always recognize pain in those with AD. Nurses may respond to aggression with anxiolytic and antipsychotic medications that do nothing to alleviate pain and leave elders less responsive and less able to communicate through actions that they are hurting.

Essential Tools

Every nurse needs to know how to assess pain in patients with Alzheimer’s. Assessment tools that facilitate this include the PAINAD (pain assessment in advanced dementia); Wong-Baker Faces pain scale and the Abbey pain scale.5,6,7

Nurses in every healthcare setting need to be skilled at managing the challenging behaviors of those with AD. Becoming an Alzheimer’s Whisperer is an approach that facilitates this management in both a gentle and loving manner.

References for this article can be accessed here.

Verna Benner Carsonis president, and Katherine Vanderhorst is vice president of C&V Senior Care Specialists, Inc., Williamsville, NY.

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