The Stages of Dementia: Timeline, Symptoms, and Duration Explained

Jul 31

Where are they in their journey - and what should I expect? These are such tough questions to get answered and when you ask doctors and others, no one will give you concrete answers!! Everyone’s journey is different and their unique circumstances make it hard to pin point. But it sure would be useful to at least get a reasonable range!

You are definitely asking a very fair set of questions.

Not knowing was so hard for me. It was like going on a hike blindfolded, not knowing how far the trail went, and with a cliff on one side. Perilous and emotional!

If that resonates and you are like me, you may feel very overwhelmed and potentially paralyzed with the fear that comes with trying to understand the changes you’re seeing in someone so dear to you.

Why Estimating the Stage Matters

We ask ourselves: How do I even begin to figure out what stage my loved one is in? What type of doctor do I turn to? Are there tests for this? I’m already overwhelmed, how will I ever find the time to sort this out?

My mom had a stroke and so we were referred to a neurologist, which is the specialist that specializes in the brain and can help with an assessment. So, that made it easier for me to figure out what type of doctor we needed. But when I asked them these other questions (where are we, how do we know, what is next), I got the answer that you may have also received - “it depends”; “it is so hard to know”. That was so unsatisfying! If the neurologist couldn’t answer, I wondered if I should just accept that? But then so much was happening at once, I soon got caught up in dealing with what was immediately in front of me.

It took me a little while to realize that the answer I was getting was not enough and that I needed to be my own advocate. Because if I could understand where my mom was on her dementia journey it would allow me to:

Plan appropriate care strategies.
Anticipate future needs (less firefighting for you!).
Communicate effectively with healthcare providers, and [mom’s] extended care team
Make informed decisions about safety measures at home.
Begin exploring long-term care options, should they be necessary

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

Assessing where your loved one is on their dementia journey involves careful observation and, ideally, consultation with healthcare professionals. Each person's journey is different, just like they are. We’ve covered the different types of dementia at a high level - but a big question that is on all of our minds is … where are they in this journey and for how long? The following information can be a lot to process because it is very sad. So please read when you are ready.

Understanding the Stages of Dementia

The stages noted above are based on the FAST scale, developed by Dr. Barry Reisberg. It is a widely used tool that breaks down the dementia journey into seven stages. We cover all of the different tools in a separate blog.

It is important to note that FAST was developed for Alzheimer’s so if your loved one has a different type of dementia, this information is “roughly right and precisely wrong”, which means this is only a general guide.

As the progression through the seven stages varies significantly from person to person, there is no definitive timeline for how long an individual will remain in each stage of dementia. However, there are general patterns of decline that can help us understand and anticipate changes, which I’ll share with you here:

Stage 1: No Cognitive Decline

Duration: No set timeline; individuals remain in this stage until cognitive decline begins.
Description: This stage applies to adults who are cognitively healthy. At this stage, there are no noticeable symptoms of dementia. Your loved one functions normally without any memory or cognitive impairments.
Variation by Type of Dementia: This stage is consistent across all types of dementia since no symptoms are present yet.

Stage 2: Very Mild Cognitive Decline

Duration: Unknown or indefinite. This stage often overlaps with normal aging.
Description: Your loved one may forget names, struggle to find words, or misplace objects occasionally but remains fully independent. At this stage, these changes often mirror normal aging and so are attributed to that rather than dementia.
Variation by Type of Dementia: People with Alzheimer’s disease may remain in this stage for years before progressing. Other types of dementia, such as vascular dementia, may skip this stage entirely due to sudden onset after a stroke or other vascular event. For frontotemporal dementia (FTD), early symptoms may focus on personality changes rather than memory loss.

Stage 3: Mild Cognitive Decline

Duration: Typically lasts 2–4 years.
Description: Subtle signs of cognitive impairment become noticeable to close friends and family. Your loved one might struggle with remembering recent events, organizing (complex) tasks, or navigating new places. You might also notice that they may repeat questions or experience difficulty concentrating. Their functional abilities remain intact, aided by a comfortable routine, but subtle changes become noticeable to you.
Variation by Type of Dementia: Alzheimer’s disease often progresses slowly through this stage, while frontotemporal dementia may show more pronounced changes in personality and behavior (e.g. impulsivity) rather than memory loss. People with lewy body dementia (LBD) may exhibit visual hallucinations alongside cognitive changes.

Stage 4: Moderate Cognitive Decline

Duration: 2 years, on average.
Description: This stage involves more pronounced cognitive deficits and challenges with daily tasks. Tasks like managing finances, cooking meals, or planning events may become more obviously challenging. You may notice that they are forgetting recent events. Also, while your loved one may need help with these types of instrumental activities of daily living (IADLs) they may still perform basic self-care.
Variation by Type of Dementia: In Alzheimer’s disease, memory loss is prominent. Vascular dementia may show more variability depending on the extent of brain damage caused by vascular events.

Stage 5: Moderately Severe Cognitive Decline

Duration: This middle stage may last between 1.5 and 2 years.
Description: Individuals at this stage require significant help with daily activities but retain some independence. Your loved one’s memory loss intensifies, and confusion about time and place becomes more frequent. Assistance with basic activities of daily living (ADLs), such as dressing, choosing appropriate clothing for the weather or occasion, and basic hygiene, is often required.
Variation by Type of Dementia: Alzheimer’s disease progresses steadily through this stage. Lewy body dementia may feature additional symptoms like hallucinations or motor impairments. Loved one’s with Parkinson's disease dementia (PDD) may find that motor impairments accompany cognitive decline at this point. Language difficulties may worsen significantly for those with frontotemporal dementia FTD.

Stage 6: Severe Cognitive Decline

Duration: This stage can last from several months to a few years, depending on the individual's health. In general it is estimated to last around 2–2.5 years.
Description: This stage involves extensive care needs and loss of independence. Significant memory loss occurs at this stage. Your loved one may struggle to recognize family members or recall personal history. They require help with nearly all activities of daily living (ADLs), including bathing and eating. They may also exhibit personality changes or behavioral symptoms like agitation or paranoia. Substages (6A–6E)* provide additional detail.
Variation by Type of Dementia: Frontotemporal dementia may present with severe behavioral challenges at this stage, while vascular dementia progression depends heavily on overall health and secondary strokes. Alzheimer’s disease has continued, gradual progression through this stage. And our loved ones with early-onset dementia will exhibit a faster progression compared to older adults due to more aggressive forms.

Stage 7: Very Severe Cognitive Decline

Duration: The final stage often lasts six months to a year. However, it can last up to 1.5–2.5 years, where survival in substage 7f (loss of physical functions) can vary widely.
Description: In the final stage, your loved one becomes entirely dependent on others for care. They may lose the ability to speak coherently, walk unaided, or perform any self-care tasks. Hospice care is often recommended during this stage. Substages (7A–7F)* provide additional detail about physical decline, such as difficulty sitting up or smiling.
Variation by Type of Dementia: Alzheimer’s disease typically follows this timeline closely. In contrast, individuals with Lewy body dementia or Parkinson’s dementia (PDD) may experience more motor-related complications that affect physical decline.

*The Functional Assessment Staging Tool (FAST) breaks down Stage 7, the final and most severe stage of dementia, into six substages (7a–7f). Each substage represents a progressive loss of functional and physical abilities, reflecting the profound decline in cognitive and physical health.

Executive Summary

The following is a summary of what you just read, with a focus on observable behaviors to help assess for your loved one:

1 – No difficulty either subjectively or objectively

2 – Complains of forgetting the location of objects—subjective word-finding difficulties

3 – Decreased job functioning evident to co-workers. Difficulty in traveling to new locations. Decreased organizational capacity*

4 – Decreased ability to perform complex tasks (e.g., planning dinner for guests, handling. personal finances, etc.)

5 – Requires assistance in choosing proper clothing to wear for the day, season, or occasion (e.g., a patient may wear the same clothing repeatedly unless supervised)

6a – Improperly putting on clothes without assistance or prompting (e.g., may put street clothes on overnight clothes, put shoes on wrong feet, or have difficulty buttoning clothing) occasionally or more frequently over the past weeks

6b – Unable to bathe properly (e.g., difficulty adjusting bathwater temp.) occasionally or more frequently over the past weeks

6c – Inability to handle mechanics of toileting (e.g., forgets to flush the toilet, does not wipe properly or properly dispose of toilet tissue) occasionally or more frequently over the past weeks

6d – Urinary incontinence occasionally or more frequently over the past weeks

6e – Fecal incontinence occasionally or more frequently over the past weeks

7 – See my blog specifically on this stage

That was a lot! At the beginning of your journey, it is hard to imagine what this looks like - and that is a good thing. Glya Health has been developed with the goal of curating your journey, one step at a time. The information and resources you will need to be prepared for the next milestone in the journey will be here, waiting for you. You can refer back to this over time. Remember to be kind to yourself throughout this process. Take it one day at a time and never underestimate the power of your presence and love in your loved one's life.

In solidarity,