Understanding Dementia Stages: The Professional Tools That Help Guide Care
Dementia is referred to as the “longest goodbye”; an journey to be navigated.
It really helps to understand the tools healthcare professionals use to figure out what type of dementia your loved one has and how far along they are in the journey. Everyone’s experience with dementia is different, so it’s often tough for doctors to say exactly where someone is at any given moment. But even having a good idea of the range can make a big difference for you as the primary caregiver.
One of the most powerful things you can do is learn the “language” of these assessment tools. When you know what kinds of signs and symptoms these tools focus on, you’ll be better equipped to share the right information with your loved one’s doctor. This helps them make the most accurate assessment possible and work with you to create a care plan that truly fits your loved one’s needs.
Where do I start?
To get out of firefighting mode takes information!
For example, did you know?
In early stages (Stages 2–3), an important focus is on maintaining independence;
In middle stages (Stages 4–5), it’s about prioritizing safety and providing assistance; and
In late stages (Stages 6–7), shift toward comfort care and other appropriate services
This blog is intended to give you a summary of the formal assessment tools that a professional will use and a better understanding of the stages dementia will take so that the above stage-related information will be more relevant to your loved one. Let’s arm you with information so you can focus on the moments of joy that you can and will experience with your loved one!
Seeking Professional Guidance
To know the “stage”, you can get a formal assessment or read a lot and make an educated guess.
To get a formal assessment done, it is best to consult a neuro specialist. Your loved one’s primary care physician can refer you to one. You can also do some research on your own to find neurologists in your area. My mom’s primary care physician actually specialized in geriatric patients and so had several referrals. My suggestion is to meet with more than one, if you can. Finding someone who approaches the individual in their office humanely, and not just as a “subject with a disease” will be important for you and your loved one as you navigate the assessment stage.
These specialists can leverage the various tools listed below and make recommendations tailored to your loved one’s needs. These are formal assessment tools that can help provide a structured evaluation. So let’s start with sharing what those are and in a future blog post we can discuss how to use your powers of observation to give you a place to start.
The FAST Scale
The FAST scale focuses on functional abilities rather than just cognitive symptoms. It's particularly useful for tracking Alzheimer's progression but can apply to other forms of dementia. See below about tailoring to the stage for more detail on FAST.
Global Deterioration Scale (GDS)
The GDS is sometimes referred to as the Reisberg Scale. Similar to the FAST scale but slightly broader in scope, the GDS categorizes dementia into seven stages based on cognitive decline, including memory loss. Not all types of dementia (like Frontotemporal dementia) include memory loss so this is a guide and not exact.
Someone in GDS Stages 1-3 does not typically exhibit enough symptoms for a dementia diagnosis. Usually by the time a diagnosis is made, a dementia patient is typically in GDS Stage 4 or beyond. GDS Stage 4 is considered “early dementia,” Stages 5 and 6 are considered “middle dementia,” and Stage 7 is considered “late dementia.” These labels of “early”, “moderate”, and “late stage dementia” are commonly used. What is less commonly referred to is the stage. But it is the stage that actually gives you, the caregiver, a better sense of where your loved one is in their journey.
Mini-Mental State Examination (MMSE)
The MMSE was introduced in 1975. This quick test assesses various aspects of cognitive function, including orientation, memory, attention span, problem-solving abilities and language skills. It's widely used in clinical settings and can help track cognitive changes over time.
Montreal Cognitive Assessment (MoCA)
The MoCA is a commonly used test to detect mild cognitive decline and early signs of dementia. It can help identify people at risk of Alzheimer's disease, and screen for conditions like Parkinson's disease or the effects of brain tumors. The MoCA test is an update from the older Mini-Mental State Examination (MMSE). It is a 30-point assessment that takes about 10 minutes to complete. While the MOCA test is simple to use and is useful in detecting dementia, it cannot differentiate between the different dementia types.
Clock Drawing Test
This simple test can be effective in detecting cognitive impairment. The person is asked to draw a clock face showing a specific time, which can reveal issues with executive function and spatial awareness.
Other tests
The Saint Louis University Mental Status (SLUMS) Examination is a screening test for Alzheimer's disease and other kinds of dementia. It is an alternative to the more widely used MoCA and MMSE and consists of 11 questions.
The Alzheimer's Disease Assessment Scale-Cognitive Subscale (ADAS-Cog) is used to diagnose the severity of dementia in people already diagnosed with dementia. This test requires a lot of specialty training and so the ADAS-Cog is most commonly used in clinical trials and is considered the gold standard for assessing a person's response to Alzheimer's treatments.
The Short Portable Mental Status Questionnaire (SPMSQ) is a simple test that doesn't require any writing or drawing. It can be administered anywhere and consists of 10 standard questions.
Tailoring Care to the Stage
While these tools and observations can be helpful, it is also important to remember that Dementia is a progressive condition, and its symptoms can change over time. Regular assessment and monitoring are crucial for adapting care strategies and ensuring your loved one receives more targeted and effective care. The FAST score is a common language for delineating stage of the disease and in general what symptoms you might see and behavior to expect:
Early Stages (FAST Stages 2-3)
Focus on maintaining independence and supporting memory function. Encourage social engagement and cognitive stimulation activities. Speech therapy and/or occupational therapy might also be appropriate. Additionally, talk to the professional(s) about what treatments and clinical trials exist and whether they are right for your loved one. This is also a good time, as a family, to broach the delicate topic of late stage now, so that you know what your loved one’s wishes are when they can still share them. See my blog on how to have that tough conversation!
Middle Stages (FAST Stages 4-5)
These stages require increased supervision and assistance with daily tasks. It will be important to implement safety measures at home and consider support groups for both your loved one and you. Taking the time to assess the various specialized care options at the beginning of your caregiving journey, within the context of your loved one’s financial situation, is important. They can go with you to visit any that you identify and it provides a good opportunity to discuss their wishes while they are able to communicate them.
Late Stages (FAST Stages 6-7)
Prioritize comfort and quality of life. Tap into those specialized care options and discuss your loved one’s end-of-life preferences with the healthcare providers who are part of their care team.
For those who want to dive deeper, we cover more information about the FAST stages in our blog “The Stages of Dementia: Timeline, Symptoms, and Duration Explained”.
The Journey Ahead
Remember that dementia is a journey, not a destination. Your loved one's needs will change over time. There are lots of efforts underway by pharmaceutical, device and diagnostic companies to try and get to earlier detection - and even prevention - of dementia. However, the science is still young and so to get an early diagnosis, your observations and advocacy will remain important for your loved one.
Estimating where your loved one is on their dementia journey is an ongoing process that requires patience, observation, and compassion. While tools like the FAST scale can provide helpful guidance, what matters most is the love and support you provide along the way. Your presence and connection make a world of difference to your loved one, even when the disease makes it hard for them to express it. Be patient with your loved one, and equally importantly, be patient with yourself. You're doing the best you can in a challenging situation.
Glya Health was started with a commitment to being that “friend in your pocket”, with you for the duration of this journey. We are honored and privileged to share it with you.
In solidarity,
Kate
Sources:
