A Common Language for Dementia using the GEMS®
It is 2026 and there is currently still NO STANDARD LANGUAGE for dementia.
Each healthcare professionals decides which system to utilize. If we don’t use the same language when talking about brain failure (dementia), how are we supposed to communicate? There are far more than 10 different measures of function describing dementia - all different languages describing the same thing - brain failure. If you are new to the world of brain failure, this can be extremely confusing. You are not alone. Even professionals who specialize in dementia care find a lack of a common language frustrating. Below we will compare five different measures of function.
In this first beautiful chart, Dementia Care Guides describes five levels of dementia. It is a lovely design, but when you look closely you will notice something common to most global measures of function. This system describes what a person is no longer able to do. There are general guidelines for what to do as a Caregiver, but there are not strategies to use and strategies to avoid at each level of dementia.
Some healthcare professionals use the 6 Allen Cognitive Levels (shown below) to measure the levels of brain failure (dementia). This system looks at skills remaining and some strategies. The Allen Cognitive Scale is the foundation for Teepa Snow's Living GEMS®.
The 6 Allen Cognitive Levels
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Level 1: Automatic Actions
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Abilities: Profoundly impaired cognition. The person is largely unresponsive except for automatic, reflexive actions like swallowing or locating stimuli.
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Assistance Needed: Total assistance; 24/7 care is required.
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Level 2: Postural Actions
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Abilities: Gross body movements, changes in posture, and reacting to basic movements. The person is aware of movement but doesn't understand the effect it has on objects.
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Assistance Needed: Maximum assistance required for daily transfers and basic mobility.
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Level 3: Manual Actions
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Abilities: The person can react to tactile cues and use tools or everyday objects, but they struggle to understand the long-term cause-and-effect of their actions.
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Assistance Needed: Constant supervision is necessary to initiate, continue, and complete daily tasks.
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Level 4: Goal-Directed Actions
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Abilities: Can perform familiar, routine tasks (e.g., making a snack or walking a familiar route). The person relies heavily on visible cues and has difficulty with new learning, anticipating errors, or managing unexpected changes.
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Assistance Needed: Minimal to daily supervision is required to ensure safety and handle finer details.
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Level 5: Exploratory Actions
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Abilities: Mild cognitive impairment. The person can learn new activities and problem-solve through trial-and-error. They can live independently but may act impulsively or lack the ability to plan ahead.
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Assistance Needed: Standby assistance or periodic check-ins are beneficial for managing complex or high-risk tasks.
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Level 6: Planned Actions
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Abilities: Normal cognitive function. Fully capable of anticipating errors, planning for the future, problem-solving, and functioning independently.
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Assistance Needed: None
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Now look at Teepa Snow’s GEMS®. She describes each level with a Positive Approach to Care. She describes the characteristics and skills remaining. She offers strategies to use and strategies to avoid at each level..
GEMS®.pdf
Finally, the last photo is a chart that compares the GEMS® with 8 different Global Measures of Function.
This chart compares the GEMS® with 8 other Global Measures of Function:
- Global Deterioration Scale (GDS) - the tool I started using in the early 1990's
- Functional Assessment Stages (FAST)
- Allen Scale of Cognitive Level & Modes - the scale used as a foundation for Teepa Snow's GEMS®
- Alzheimer's Association Rating Scale
- World Health Organization Disability Assessment Schedule (DSM V)
- Global Assessment of Function (GAF)
- Rio Los Amigos Scale (RLA)
- Minimum Data Set (MDS)
- Developmental Age Comparisons (DAC)
Which Global Measure of Function does your doctor use?
Which Global Level of Function does the nursing home use and train their Caregivers to utilize?
In the article: "DEMENTIA - Keep Responses Positive" published in the Fall 2023 issue of GO Christian Magazine, KB McGee, SLP describes the need for a Common / Standard Language for Dementia and suggests Teepa Snow's GEMS® as the perfect tool.
Teepa Snow, dementia expert and educator, established the Living GEMS® over 20 years ago for Caregiver training. There are hundreds of YouTube videos, Power Point Workshops and free "Positive Approach to Care" - GEMS® trainings available. Teepa Snow is known worldwide and has traveled internationally sharing her wisdom and her Positive Approach to Care with healthcare professionals and Care partners who strive to help people live his/her best life with dementia.
The beauty of the Living GEMS® is that Teepa focused upon the skills still remaining at six levels of dementia . When using the GEMS® to communicate, care partners stay positive. Most importantly, the GEMS® provides Caregivers with strategies to use and strategies to avoid at all six levels of cognitive function to create meaningful days and moments of joy for the person living with brain failure.
With a common language for dementia, healthcare professionals and Caregivers can communicate using the same language. There are several, well-known assessment tools; however, none of them provide strategies to use and strategies to avoid - except the GEMS®.
When the Caregiver Team is able to use a common language, communication is possible. The Living GEMS® is the only staging mechanism that provides characteristics, strategies to use and strategies to avoid at each level of dementia.
*MCI = Mild Cognitive Impairment
Then take a look at the next three systems. The Global Deterioration Scale (GDS), the Functional Assessment Scale (FAST) and the 7 Levels of Dementia describe what the person living with dementia is no longer able to do. Although there a few strategies offered in the GDS, the strategies are lacking important information to help the Caregiver get through a day helping a person living with brain failure.