A diagnosis of dementia is very personal, but often times, it can be a confusing diagnosis full of mystery. There seems to be limited face-to-face education about what it means to be diagnosed and living with dementia today and in the future. Questions such as, “What can I expect from the person with dementia? What are other people’s perceptions about dementia? How can I help someone living with dementia, and how can they help their caregiver?” are not being answered.

In this post, we will cover what dementia is and what it affects, stages of dementia, and ways to consider a different perspective about people living with dementia.

What is Dementia?

In an earlier post, “Alzheimer’s & Dementia Care,” we explained that dementia is a group of symptoms that changes cognition (thinking and memory) in such severity that independent performance of daily activities is interrupted. In other words, memory loss affects function. Function is comprised of emotional, sensory, physical, and cognitive components. Let’s briefly discuss the components of function that are affected when a person is living with dementia.

Emotional Component
Examples of emotional components that affect a person’s ability to function with dementia are moods or emotional state, including agitation, pleasantly confused, scared, depressed and anxious.

Research indicates that 92% of people with dementia experience at least one emotional component. Emotional components must be addressed with a doctor or care provider to decrease unwanted emotional outbursts.

Sensory Component
Dementia is something that affects the brain, which means the brain of someone living with dementia may experience altered perceptions of sensory input. This includes changes in hearing, vision, pain, and even taste. An example of altered vision would be a person with dementia perceiving a step to be the edge of a cliff, and therefore refusing to walk further. Changes in taste, for example, may limit a person from adequate food intake. In this case, a caregiver may try adding a little salt (as allowed per diet) or sugar to improve the taste, even to green beans!

Physical Component of Dementia
Range of motion, strength, endurance, and balance may be diminished due to
changes in the emotional, sensory, and cognitive ability to function. This is especially important as limitations with physical strength and endurance affect a person’s ability to walk at a healthy speed or react to fall risks.

Cognitive Component of Dementia
Examples of cognitive components include memory, attention, problem solving, and sequencing. Naming abilities (aphasia), judgement, interest in activities, and calculating (math skills) becomes poor.

Ninety-two percent (92%) of people living with dementia experience at least one emotional component.

An Important Theory About Dementia

Why Do I Need to Know a Theory About Dementia?
(Push up your glasses and put that pen in your pocket protector)

Alzheimer’s disease and other forms of dementia is now the 6th leading cause of death in the United States. The burden of dementia on individuals, caregivers, government, and the nation’s healthcare system is huge. Currently, there are approximately 6 million Americans living with dementia, but that number is projected to rise to nearly 14 million by 2050; costing the U.S. close to $1 trillion. These facts support the vital need to do our best to understand dementia in order to effectively help those living with dementia.

One theory often used to explain dementia is called the “theory of retrogenesis,” developed by B. Reisberg, M.D. Dr. Reisberg’s hypothesis is that people reverse the stages of development due to dementia. He compared the stages of dementia to developmental ages. His concept was basically, “first in – last out.” This means the first cognitive functions we develop are typically the last ones to be lost during the progression of dementia.

The theory of retrogenesis can be very helpful when comparing the cognitive level of a person with a late stage dementia to the developmental stage of a 12-18 month old. With that said, Dr. Reisberg’s theory does NOT dismiss the fact that a person living with dementia is someone who should be treated with the up most respect, as with any other adult of the same age.

That wasn’t so bad! Now let’s move on to the stages of dementia and how the theory of retrogenesis helps frame each stage of dementia.

Stages of Dementia

There are three common scales medical professionals use to determine how far advanced or the stage a person’s dementia. The two I prefer to present during family education are called The Global Deterioration Scale (GDS) and the Functional Assessment Staging (FAST) Scale.

A New Perspective…A Paradigm Shift

If we use the theory that a person with dementia develops backwards, then someone with stage 4 dementia (GDS or FAST) has the “developmental’ status, particularly a cognitive status, of a 10 to 12-year-old. Our expectations for the cognitive, or executive functioning, of a 12-year-old are far different than that of a 40-year-old.

Let me give you example. If I were to tell you that you were in charge of Thanksgiving dinner this year for a guest list of 12-15 people, you might roll your eyes, but you could complete this task! Now, let’s say we ask a 12-year-old to be in charge of Thanksgiving dinner. Could the 12-year-old complete this task alone? Yes. It might not be a turkey and stuffing, but it could certainly be a spaghetti dinner! My point is, a person with stage 4 dementia is capable of a lot; we just need to change our expectations.

This is where we, “typical functioning adults,” need to change our thinking and perspective about those living with dementia. In other words, we need a paradigm shift. Defined, a paradigm shift is a fundamental change in approach or underlying assumptions.

Our loved ones are still able to perform daily tasks with independence. They may need extra time, a quieter environment, or even verbal reminders for what step comes next, but the point is that the task can still be done; just at their best ability for the stage of dementia they are in.

Let’s Sum It Up!

We Can Help!

Your rehabilitation team, of Physical, Occupational, and Speech-Language Pathologists can help with education about dementia and address the components associated with living with dementia so your loved one can live to the best of their ability! Call Trio Rehab for more information!