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Author: 
Kim Warchol, President and Founder of DCS at CPI 
Understanding Stages of Dementia

Why is it so important to assess and identify a person’s stage of dementia? To help understand the answer to that question, I ask you to think about another cognitively compromised group- children- and all the information their developmental age supplies you.

Let’s imagine you were the care person for three new patients, and you were told each one had a broken leg. But before you enter their rooms to help with morning ADL care you learn, one patient is an infant, one is 3 years old, and the other is a teenager.

Let’s stop and think about the tremendous insights you immediately gain from knowing their ages. How would knowing their age guide your expectations regarding how independent they could be, how capable they are of learning, and how much help they would need from you to get ready for the day?

And think about how you would instinctively change the way you communicate because you know each child will have a very different ability to understand and to comprehend your verbal and written directions.

The developmental age immediately informs us of a child’s highest level of independence possible, and it gives an idea of their limitations that we must adapt to and support, and their abilities we can use. Therefore, in our scenario we know, simply due to their age, and regardless of any impact from a broken leg:

  • The infant will be totally dependent and will require total care.
  • The toddler may be able to do parts of the morning activities with you doing at least 50%. Also, you will have to proactively manage the safety impact of the broken leg.
  • The teenager should be capable of doing morning activities independently and can learn strategies you teach to compensate for their broken leg. But you may need to supervise because of some impairment in judgment or impulsivity.

That is the same usefulness of a cognitive level or dementia stage. Knowing and understanding the stage of dementia the person is currently functioning within gives us all that valuable insight, clearing muddy waters as it guides our expectations and approach. The dementia stage is our care road map.

Therefore, in this blog we will explore the vital importance of dementia staging as a key tool for quality dementia care. But we also want to take a moment to first reflect on another key insight from Theresa about personhood. As Theresa told us about her husband Bob who is living with Lewy Body dementia, she said “A disease does fit into categories. A person does not.”

You’re right Theresa. We must always consider personhood first, and we once again see this in childcare. No two 3-year-olds are the same in what they can and can’t do because personality, environmental influences, and motivation play a part. Thus, developmental age guides our expectations, but we know the uniqueness of each child must also be considered, honored, and understood. The same is true in dementia care. Thanks for the reminder, Theresa.

Dementia Stage Assessments

 What tools are used to assess dementia stage? There are many cognitive assessments and functional cognitive assessments available, and there is a distinction.

  • Functional cognitive assessments use performance in activities to identify cognitive level. Examples are the Functional Assessment Staging Tool (FAST) and Claudia Allen’s Cognitive Disabilities Model and Allen Assessments.
  • Whereas cognitive assessments isolate and identify specific areas of cognition that are impaired, and this is done by questionnaires or paper pencil tests. An example is the Montreal Cognitive Assessment (MOCA).

As a dementia specialized Occupational Therapist, I have used many cognitive screens and assessments throughout the years but my go-to is Claudia Allen’s Cognitive Disabilities Model and the associated functional cognitive assessments. I have found this model and the assessments to give me the richest, most accurate information, and the functional nature helps me to easily bridge from the assessment results to the development of a treatment or care plan.

Allen Cognitive Disabilities Model and Allen Cognitive Levels

Claudia Allen described characteristic abilities and deficits at each of her six Allen Cognitive Levels. When using your skilled observations of how the person performs in daily activities and/or using some of her standardized assessments, you are looking for these characteristic abilities and deficits. Level six is considered normal cognition with no deficits, level five is similar to mild cognitive impairment and levels one through four equate to the stages of dementia.

We never determine a person’s cognitive level or dementia stage by observing performance on just one task. For best results, we observe several activities. Once you see a pattern of performance across several activities, consistent with the characteristics of a certain Allen Cognitive Level, you can feel confident that you have identified the person’s current cognitive level or dementia stage.

However, functional performance may fluctuate from day to day or between activities. Why? Allen’s model helps us to answer this. It is built upon the fundamental principle that how well someone performs in any given task on any given day is related to three key components: A persons Can Do, Will Do and May Do:

  • Can Do: Their realistic cognitive and other abilities.
  • Will Do: Their interests, preferences, and culture. (aka their personhood)
  • May Do: Factors outside of the person that influence their independence such as their environment and the competence and availability of needed care support.

Below are example scenarios that illuminate the influence of these three factors on performance. This exemplifies the power of the model, including helping us to understand fluctuations in performance, that often confuses the assessor and leads to inaccurate dementia staging.

In our example, let’s say I ask Millie to make coffee as a part of my functional cognitive assessment using Allen’s model and skilled observations. I will closely observe and score her performance, thereby assessing her cognitive level on that one task.

In Scenario 1: Millie likes coffee and I ask her to make coffee in her familiar home, using her coffee pot and other typical supplies. Millie does this independently showing no sign of any cognitive deficits. Why?

  • Knowing Allen’s model, I understand why Millie would score very well in this scenario. She likes coffee (matches her Will Do) and all the supplies and the environment were familiar (supportive May Do). Thus, with no functional interference from a lack of motivation and with the cognitive demand of the activity being lessened because there was nothing new/unfamiliar requiring her to use cognitive skills required with novel situations, Millie appeared to have normal cognition. Bottom line, I couldn’t observe cognitive deficits associated with early dementia because this situation wasn’t able to test for it.

In Scenario 2: Millie likes coffee and I ask her to make coffee in the therapy clinic, using a coffee maker brand and type she has never used. In this situation, Millie had difficulty and needed some cognitive assistance. Why?

  • In this test situation, the cognitive demand of making coffee became higher because we asked Millie to make coffee using unfamiliar supplies and in an unfamiliar environment. This otherwise routine activity now includes novel components requiring Millie to use her executive functions and highest cognitive skills. Now her cognitive challenges revealed themselves as she was less independent. Because of her cognitive deficits she needed me to show her, was unable to figure it out on her own or understand the written directions.

Scenario 3: Millie doesn’t like coffee and rarely makes it. Regardless, I asked Millie to make coffee in the therapy clinic as a part of a cognitive assessment. Millie was not interested and refused. Eventually I convinced her to make the coffee so I could do the cognitive test. She nervously and begrudgingly participated but did a poor job, needing a lot of cognitive support and scoring poorly on this assessment. Why?

  • Millie lacked the interest and motivation to make coffee. Thus, without this I would not be able to see her best abilities because I did not have her agreement or full attention. Therefore, I must throw out that test result, recognizing my barrier to discovering her true cognitive level was my inability to gain her interest and motivation (I didn’t match her Will do/personhood).

By understanding the influence of Can Do, Will Do and May Do on functional performance, we can make sense of inconsistencies so we can assess cognition and dementia stage accurately. This then enables us to develop realistic goals and treatment plans.

Allen Cognitive Levels for Care and Treatment

I mentioned that the six Allen Cognitive Levels describe abilities and deficits that have been categorized into these levels (stages). During assessment, we observe for those characteristics when the person is doing an activity (while understanding the performance influence of Can Do, Will Do and May Do). That is how we score.

But we go beyond assessment, also using these characteristic functional abilities and deficits, in care and treatment. Our goal is to match the challenge of the activity and our approach to the person’s ability level. We use cognitive activity analysis to adapt any activity to the just right level of challenge.

As an example:

Allen Cognitive Level 3 is called Manual Actions (aka middle stage dementia) and consists of these key characteristics:

  • Deficits:  The person is no longer goal directed (doesn’t recall the goal of an activity) and cannot sequence self through the steps of an activity.
  • Abilities: The person can follow cues and 1 step directions (to be sequenced through each step of an activity) and can pick-up/hold/use familiar objects.

Therefore, knowing these characteristic abilities and challenges, I would know how to adapt an activity like making cookies for someone performing in Allen Cognitive Level 3 to participate successfully.

  • Is not goal directed: At this level they wouldn’t be able to remember a recipe and make the cookies on their own (sequencing themselves), so I wouldn’t ask that of them.
  • Can follow 1 step directions: But I could get out the needed supplies and cue them (verbally and visually) to do one step at a time (e.g., Step 1: Stir the dough. Step 2: Roll the dough into balls, etc.).

With this appropriate activity simplification to match their cognitive level, they are helping to make cookies, doing about 50%, one single step at a time, with my cues and 1:1 assistance.

Similarly, therefore, I can take any familiar and valued activity that also has multiple steps and do the same thing. For example, I can help someone with dementia to brush their teeth, adapting it in the same way as I did for making cookies. Once again, I would break it into single steps, set out the supplies one at a time to match that step, and cue the person to do one step at a time. With this cognitive support a person in middle stage dementia can now achieve their potential to help brush their own teeth.

As you can see, when we know a person’s cognitive level/dementia stage we apply the stage to the care plan and help them to participate at their best ability in any valued activity.

In summary, dementia specialized care isn’t just about person-centered care, it also requires us to be experts in dementia staging. This is why dementia stages are a second key pillar of our Dementia Capable Care approach and training programs. In our trainings we teach person-centered care AND we describe how to use Allen’s model to assess cognitive level (dementia stage), and to use the Allen Cognitive Levels to create realistic goals, and to adapt activities to the just right level of challenge.

Once you learn the Dementia Capable Care approach you will have these invaluable skills, helping those with dementia to be as successful, participatory, and independent as possible at every stage of dementia. Good health and quality of life are byproducts of engaging in meaningful activities at one’s best ability.

I can’t think of how any paper/pencil or interview based cognitive assessment could give such rich, valuable, and applicable results. Yes, I have used the MOCA and other cognitive assessments. They are fine tools to identify cognitive deficit. But none are as abilities-focused, comprehensive, or useful as Allen’s model which identifies the stage of dementia and turns that stage into a powerful care road map.

I guess that’s why I went to hear and learn from Claudia Allen in the early 90’s and I never stopped using or advocating for her work. She was a passionate genius, far ahead of her time. Her evidence-based model and levels have never been more appropriate as we seek to use Functional Cognition to best serve the growing number of people living with dementia. Determining a person’s stage of dementia is an essential component of setting the person up for success and easing the burden of care. These are the kind of positive outcomes that truly matter.

Want to learn more? Contact us: Call: 877-816-4524 or Email: dcssolutions@crisisprevention.com

Did you know we carry a variety of assessment tools? Allen’s battery of assessments consists of tools such as the Routine Task Inventory (RTI), Allen Cognitive Level Screen (ACLS), and the Allen Diagnostic Module (ADM) projects. And, skilled observations in all activities are invaluable and should be done all the time. That’s why we developed the Cognitive Assessment Tool Guide (CATG). This tool is easy to use, helping you and your team to hone your observation of abilities seen at the different Allen Cognitive Levels. Check out all our products related to the Allen assessments here.

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Posted: March 2024

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