Reducing Repetitive Questioning

One common challenge for care partners of people living with dementia is repetitive behaviors.

Procedural memory is the ability to learn a task using motor skills, habits, and other forms of unconscious learning. It is usually accessible to people living with dementia.

We can use this ability to help people living with dementia avoid repetitive behaviors.

One example would be to create a note that answers a repetitive question. The care partner can teach the person with dementia how to retrieve the information in the note whenever they have a question.

Step 1: Make sure that the person living with dementia can read the note.

This may involve having the person write the note, or if the care partner writes the note, making the print large and clear enough to be easily read.

Whatever approach is used, ask the person to read the note before going further.

Also, ask the person to give the note a name.

Use the person’s name for the note when you talk about it (such as ‘Julie’s Visits’).

Step 2: Make sure that the message in the note provides the information or gives the reassurance that the person needs.

Step 3: Decide together the best place to keep the note. This might be posted to a door, in a bag on a walker, in a purse or pocket, on a whiteboard, or in some location specific to the question.

It is best that the note is secured so that it isn’t moved or misplaced.

Step 4: Teach the procedure through practice. When the person asks the question such as when is Julie coming, say something like “I think there’s a reminder about that in ‘Julie’s Visits.’ Let’s find it.”

Then you would go together to the location where the note is and ask the person to look at it.

You would ask the person to read the note out loud, and then say “That’s right, whenever you want to know about ‘Julie’s Visits,’ or the specific topic of their question, you can just come here.

Teaching the procedure needs to be done consistently across care partners as the person is learning the task.

For multiple care partners, it might be best to share a script for teaching the procedure.

In what ways might using procedural learning support both people living with dementia and care partners in your organization?

2) The Use and Misuse of Antipsychotics and Psychotropics

In our country, and worldwide, there is a tremendous overuse and misuse of antipsychotic and psychotropic drugs to treat people living with dementia.

Dr. Al Power, an international dementia expert, says that, “Overmedication of people with dementia is not simply a problem in nursing homes; it is a community-wide problem that reflects broad societal views.”

Antipsychotic medications are highly potent drugs that work in the brain to block certain chemicals that can cause symptoms of psychosis, such as hallucinations and delusions.

These drugs are most often used with mental illnesses like:

• Schizophrenia,
• Bipolar disorder,
• Huntington’s disease, or
• Tourette syndrome.

They include drugs such as:

• Risperdal,
• Haldol,
• Abilify, and
• Seroquel.

Psychotropic drugs are also overused and misused to treat people living with dementia.

The category of “psychotropic” drugs includes antipsychotics as well as anti-depressants, anti-anxiety drugs, and hypnotics.

Antipsychotic drugs, when prescribed for older people with dementia, can have serious medical complications, including loss of independence, over-sedation, confusion, increased respiratory infections, falls, and strokes.

In 2005, the Food and Drug Administration (or FDA) issued a “Black-Box Warning” on these drugs because they can increase the risk of death for people with dementia.

The FDA requires drug companies to label antipsychotics with their side effects and potential dangers, including the increased risk of death in older adults.

Antipsychotics are NOT clinically indicated to treat for dementia-related psychosis, and there are not any medications approved for this purpose.

They ARE associated with a significant increase in death when given to older people with dementia.

People living with Lewy Body Dementia are highly sensitive to antipsychotics.

According to the Lewy Body Dementia Association, “severe neuroleptic sensitivity affects up to 50% of the patients with Lewy Body Dementia who are treated with traditional antipsychotic medications, and is characterized by worsening cognition, sedation, increased or possibly irreversible acute onset Parkinsonism, or symptoms resembling neuroleptic malignant syndrome, which can be fatal.” (LBDA)

People living with dementia and their care partners often assume that those who regularly work with those with dementia understand it, but the truth is that many do not.

There is a lack of understanding about what dementia is, the different types of dementia and their symptoms, and the appropriate responses and approaches that are required. As a result, misdiagnosis and the inappropriate use of medications occur routinely.

Systems of care have been built using a medical, institutional perspective and this focuses attention on what’s “wrong” with people living with dementia and seeks to “fix” it. This approach needs to be peeled back layer by layer while focusing on relationship-building, communication, and empowering the many remaining strengths of people living with dementia.

In our society, we have developed the expectation of quick fixes. This is true in medical care as well.

Physicians are expected to prescribe a drug to quickly address any problem.

Antipsychotic drugs are mistakenly used as a quick fix to reduce unwanted “behaviors” in people with dementia.

When we are talking about dementia, including Alzheimer’s disease, we have been taught to think that “challenging behaviors” are bad.

We often think “challenging behaviors” are a problem that we have to “fix” and make go away.

We’ve been looking at “challenging behaviors” as the problem, and trying to make people living with dementia “behave” the way we want them to, in ways that are more convenient and comfortable to us.

There is an even bigger problem.

For 70+ years, doctors and nurses have been taught to use tranquilizers to try to make patients “behave,” that is to conform to the rules, norms and routines of the environment.

And the health care environments are inflexible, confusing, and often scary to most patients, even those without dementia or Alzheimer’s disease.

The drugs sedate people with dementia so that not only their behavior, but also the underlying causes for that behavior are not understood and addressed.

Dr. Al Power says: “I remain firmly rooted in the belief that most distress arises as expressions of unmet needs, and that drugs are not the answer.”

We must be PROACTIVE and prevent much of the use and MISUSE of antipsychotic and psychotropic drugs.