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Navigating the 7 Stages of Alzheimer's

hands holding old photograph

One of the most useful tools a physician or care professional has when working with someone with dementia is called the FAST scale, (short for “Functional Assessment Staging”). 

The FAST scale assesses the “functional” or daily observable changes and symptoms associated with Alzheimer’s disease or other dementias — and it can provide a useful map, as well as a much greater understanding of the process of decline. But did you know that family members and loved ones can use this tool as well?

Here’s an outline of the FAST scale, along with short explanations—and recommendations for each stage and substage. 

Stage 1: No Cognitive Decline

In stage one, there are no changes seen, felt, or measured. Most of us reading this article right now are in stage 1.

What to do

The best thing to do at this stage is to make a plan for the possibility of dementia. Make sure that your care wishes are in order. Eat well, move your body, and practice cognitive-boosting activities to reduce your risk of Alzheimer’s. Work on reducing your own internalized negative ideas about aging and dementia. Keeping a positive attitude and gathering the necessary documents early on can help ease anxiety around the possibility of dementia.

Stage 2: Increase in Forgetfulness

In stage two, we will notice forgetting where we put things, what we were doing, appointments, etc. These changes will likely not be noticeable by others. Everyone forgets things—folks with dementia report failing to remember the little things more before diagnosis.

Everyone with dementia becomes more forgetful, but not everyone who is forgetful has dementia.

What to do

So what do you do if you can’t find your car keys? First, don’t panic. Fear makes outcomes worse. Second, remember that you didn’t call it a ‘junior moment’ when you forgot them as a teen. If forgetting becomes a pattern, use reminders to help. Try post-it notes, reminder apps on the phone, or smart home devices.

Stage 3: Others Begin To Notice Change

In stage three, mild decline will begin with changes in how we respond to high-demand situations. These changes will be observable by a loved one or co-worker. For example, we may forget recurring essential meetings or appointments. We may notice it is harder to perform complex tasks at work the way we used to. If we travel somewhere new, we might get more easily lost. We may have a more challenging time navigating to a new spot. Like stage two, there can be many reasons for these changes other than dementia, such as stress or other health factors.

What to do

At this point, you want to rule out other factors. Is your environment too demanding? Is there anything you can do to change it? How are you feeling psychologically? Could you use some support from a coach or therapist? How is your health? Once you take a closer look at these factors, you can start a conversation with your doctor on the next steps.

Early Stages of Dementia

Stage 4: You Notice A Change in Your Ability to Plan

In stage four, complex tasks, those that take several steps to complete, become more challenging. We may be making a favorite recipe and need to check the cookbook frequently when we haven’t needed it before. We may come home from the grocery store with things we do not need as well as duplicates of things we already had, even though we brought a list. It will feel harder to keep things straight. At this point, a physician may make a diagnosis of Mild Cognitive Impairment.

What to do

Again, don’t panic. Meet with your physician to rule out other physical or psychological ailments. Get healthy. Find tools and technologies to help you keep track of what you need to do and how to do it. The sooner you set up these systems, the longer you will remember how to use them. Re-visit your care wishes and refine them if needed. Start having conversations with loved ones to make sure your wishes are honored.

Mid-Stage of Dementia

Stage 5: Others Notice A Change

In stage five, loved ones may remark that our outfit is not appropriate for the occasion or weather. They may also tell us that our hygiene habits have changed; we do not bathe as often as we used to. These moderate memory problems may not be noticeable to us and we will likely feel that our outfit and hygiene are fine. At this point, a doctor can measure a change in our cognitive ability since our last appointment. Our diagnosis might become “moderate cognitive impairment.”

What to do

Remember, your loved ones are just that, those who love you. Get plugged into support groups and Alzheimer’s cafés. On a practical side, try to see reminders to change or bathe as kind and caring. If you are the one reminding a loved one, be gentle and put yourself in their shoes. If these reminders are upsetting, make them only when necessary for health or safety. When possible, have fun with it. Wear ball gowns to dinner, air out a favorite sweatshirt in-between washes, turn the AC down and embrace Christmas sweaters in July.

Stage 6: Activities of Daily Living Support

Stage six has five substages. At this stage, we need more than gentle reminders to make it through the day safely, healthily, and in good spirits. During this stage, our doctor will also be able to measure more changes in cognitive function. They may diagnose us with a major neurocognitive disorder, the clinical term for dementia.

Stage 6a - We need help getting our clothes on and off.

What to do

We sometimes need help with more complex items such as lots of buttons or an oddly placed zipper. We may also need some reminders of which things to put on before others, such as socks before shoes. Try to get clothing that is easy to put on and take off. Buying clothing in a matching color scheme can also help make getting dressed less frustrating and increase autonomy.

Stage 6b - We need some help bathing.

What to do

Make the bathroom as user-friendly as possible. If it is an option, remodeling to a universal design can be helpful. There are many ways our homes disable us, but simple modifications can increase our quality of life. Label different bath products in bold text and simple language or imagery. Number products in order of use. If possible, get 3-in-1 use products, so it doesn’t matter if you use them on your face, body, or hair.

Stage 6c - We need help with the different steps of going to the bathroom.

What to do

A visual reminder of the steps can be super helpful here and in other areas. You can use simple drawings or photographs for cueing. A bidet attachment can make clean-up more manageable.

Stage 6d - We forget to make it to the bathroom in time.

What to do

First, check for a bladder infection or UTI. These can be very distressing as we get older, causing confusion and sometimes hallucinations. If all checks out, try making trips to the bathroom more frequently. If accidents are leaks (up to eight teaspoons) absorbent underwear can help and is much less stigmatized than disposable options.

Stage 6e - We forget to use the bathroom altogether.

What to do

Be in tune with your loved one’s routine. Try guessing the usual time they will need to go to the bathroom; first thing in the morning, after coffee, an hour or so after mealtime. Incontinence care can be very distressing for all parties involved, and prevention will be the preferred strategy. When that isn’t an option, take it slow and gentle.

Late-Stage Dementia

Stage seven has six substages that show a severe decline in both language and mobility. Focus on keeping the body and person comfortable without trying to fix or change the condition.

Stage 7a - On a typical day, language consists of about six words.

What to do

Get creative about how you communicate with your loved one with dementia. How many words we use and how many we understand change at different rates. For example, we may use six words but understand 600 or vice versa. Be attuned to your loved one and shift your vocabulary to match what they can receive.

Stage 7b - All communication uses only one word.

Pay attention to body language and other environmental cues. A phrase such as “thingy thingy thing” can be full of meaning if we pay attention.

What to do

Communicate without words as much as possible. Follow the lead of your loved one and try to use visual cues often.

Stage 7c - Moving around gets difficult.

What to do

Assistive devices such as a walker or an arm may be helpful in the beginning. To maintain mobility as long as possible, you want to encourage your loved ones to do as much as they can on their own while adding support as needed. Eventually, walking around, even with help, will no longer be possible. Using a wheelchair may become necessary in this later stage.

Stage 7d - Sitting up straight becomes challenging.

What to do

Have lots of supports around the home, from armrests to assistive chairs that can arise from sitting to standing positions. Braces and belts can also aid in sitting up straight.

Pro Tip: A brace or belt should NEVER be used as a restraint to prevent someone from standing up out of a chair. Using them as restraints is dangerous and demeaning.

Stage 7e - Smiling stops.

What to do

Lack of smiling doesn't mean your loved one is not happy. It is a physical change rather than a psychological one. Start paying attention to other mood cues they may show.

Stage 7f - We can no longer hold up our heads.

What to do

At this stage, if you have not already formed a relationship with a hospice, it may be time to do so now. During this final stage, focus on being as present as possible with your loved one.

Final Thoughts

These stages focus on lost abilities at each point of the dementia journey. It is crucial to know that Alzheimer's is not all loss. Those living with a dementia diagnosis report that while some abilities disappear, others emerge. Many folks find a new and more profound connection with loved ones. It is essential to acknowledge the losses, but focusing only on loss increases suffering.

Throughout the journey with dementia, focus on what is present versus what isn't. From this perspective, we can improve the quality of life for those living with it and those who love them.

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