Beyond The Clinic: Alternative Approaches to Dementia Assessment

Aug 1

When accessing a professional isn’t possible, here are some assessment tools you can use at home.

In my other blogs, we talked about what tools are used by professionals to assess stage, the different types of dementia, and some considerations by stage of disease. We also briefly discussed why estimating your loved one’s stage matters.

While the best solution is a professional assessment, we know that isn’t always feasible, for a variety of reasons. So let’s talk about the observational tools that you have right now to determine type and stage so you can make a plan.

But before we do that, I want you to take a moment and check in with yourself.

Emotional Considerations for Caregivers

Assessing your loved one’s stage in dementia is not just a practical task—it’s an emotional experience that can bring feelings of grief and helplessness.

You cannot give what you do not have. This is one of the most rewarding - and taxing - experiences of your life. It is a gift that you are giving your loved one and it will also drain you. There are countless others navigating similar challenges who can offer advice and solidarity. Ensuring that you give yourself grace and seek out others who can support you is equally important as the care that you are giving! There are various resources so you can choose the one(s) that feel right for you in this moment, such as:

Joining caregiver support groups [e.g through Alzheimer’s Association or online]
Speaking with a therapist who specializes in caregiving challenges
Leaning on family members or close friends for emotional support

You are doing a wonderful job - take a deep breath - and let’s continue walking this path together…

How to Assess Your Loved One's Stage

You are reading this blog because you have an inkling that your loved one’s forgetfulness isn’t just because they are naturally aging. You are here because you have a nagging feeling it might be more than that. Assessing where your loved one is on their dementia journey involves careful observation and, ideally, consultation with healthcare professionals. However, depending on your loved one’s situation, and yours, accessing a professional to get a diagnosis may or may not be simple. And so while you may not have the FAST, GDS, or other tools available to you at home, there are some things to consider to help you make an educated observation of your loved one’s stage.

Daily Living Activities

Pay attention to how your loved one manages everyday tasks. The level of help required can be one of the most effective ways to estimate where your loved one is on their dementia journey. And then what type of help you observe them needing can help you to correlate, roughly to an assessment tool like FAST or GDS.

The best way to do this is to create opportunities for you to observe their ability to perform both instrumental activities of daily living (IADLs) and basic activities of daily living (ADLs). I found that spending a day together or going on a trip, where I could experience my mom’s full day to be really helpful.

IADLs include tasks like managing finances, preparing meals, shopping for groceries, and using technology.
ADLs include fundamental self-care tasks such as bathing, dressing, eating, toileting, and mobility.

So after a day together, maybe you observe one of the following:

Your loved one struggles with managing bills but can still dress themselves independently. Then they may be in FAST Stage 4.
They need help choosing clothes or remembering to eat meals, then they are likely in FAST Stage 5.

Cognitive Abilities

Pay attention to changes in memory, problem-solving skills, language use, and orientation to time and place. These cognitive changes, while not perfect, are key indicators of dementia progression.

Are they forgetting recent conversations or appointments? (~Stage 3–4)
Do they get lost in familiar places? (~Stage 5)
Are they unable to recognize family members? (~Stage 6)

Behavioral Changes

Dementia can cause shifts in mood and behavior. In earlier stages, your loved one might become more anxious, irritable, or withdrawn. They might exhibit repetitive behaviors or have trouble sleeping. Middle stages might include anxiety, paranoia, or repetitive behaviors. Later stages often bring significant personality changes or apathy. These are generalizations to help orient you. However, different types of dementia have different symptoms. While these changes can be distressing, remember that they're a result of the disease, not a reflection of your loved one's true self - and ABSOLUTELY NOT a reflection of their love for you. While they can’t express it easily, I fully believe that they know how you make them feel and are enormously appreciative of the care you are giving to them.

Physical Abilities

In advanced stages of dementia (Stages 6–7), physical abilities decline alongside cognitive function. Your loved one might have trouble with coordination or mobility. They may need assistance with walking or become bedridden. These physical changes often correspond with advanced cognitive decline.

A simple (but not perfect) test

While you aren’t a neuro specialist, you can use some of the standard questions that are part of the Short Portable Mental Status Questionnaire (SPMSQ) to give yourself a range of where your loved one is on their journey. The SPMSQ is a simple test that doesn't require any writing or drawing. It is assumed that these questions are asked and answered in one sitting, and not spread out over a couple of hours or days.

What is the date? (day, month, year)
What is the day of the week?
Where do you live?
What is your phone number?
How old are you?
When were you born?
Who is the current president?
What was your mother’s maiden name?
Can you count backward from 20 by 3s?

The SPMSQ is evaluated based on the number of errors you make as follows: 0-2 errors (normal), 3-4 errors (mild impairment), 5-7 errors (moderate impairment), and 8 or more errors (severe impairment). These “stages” definitely give you helpful, directional information but you will require more insight to be able to tailor your care plan for your loved one.

Adapting Care as Needs Change

Understanding your loved one's stage can help you adapt your care approach to meet their changing needs. In earlier stages, focus on supporting independence and helping them stay engaged in activities they enjoy. As the disease progresses, you might need to simplify tasks, provide more hands-on assistance, and prioritize comfort and safety.

Taking care of you!

I’ll end where I started. Assessing your loved one's stage of dementia can be emotionally challenging. You might feel a sense of loss as you notice changes, or anxiety about what the future holds. These feelings are normal and valid. It's important to acknowledge them and seek support for yourself as well. Consider joining a support group or speaking with a therapist who understands the unique challenges of caregiving. I waited too late to do that and it made a world of difference.

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,