Stage 7 - The Final Frontier

Aug 4

It’s been a (really) long goodbye. The substages of Stage 7 explained and what to expect?

As we’ve discussed, the progression through the seven stages varies significantly from person to person, influenced by factors such as the type of dementia, overall health, genetics, access to care, and the specific form of dementia (e.g., Alzheimer’s disease, vascular dementia, frontotemporal dementia, early onset dementia, etc.). For whatever reason, doctors and healthcare workers don’t readily share this. But from my lived experience, Stage 7, while not long in duration (compared to the journey in total), has a lot of substages that are worth highlighting. And knowing this information can help you to advocate for your loved one to get the care they need and deserve.

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.
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.

Here is a detailed breakdown of Stage 7:

7a: Limited Speech (Approximately Six Words)

Description: The ability to speak is severely diminished. The individual can say approximately six intelligible words or fewer during an average day or in the course of an intensive interview.
Impact: Communication becomes extremely limited, making it difficult for the individual to express their needs or engage in meaningful conversations.
Caregiver Focus: Caregivers must rely on non-verbal cues, such as facial expressions or gestures, to understand the individual’s needs.

7b: Single Word Speech

Description: Speech ability declines further, with the individual able to speak only a single intelligible word on an average day. This word may be repeated multiple times.
Impact: Verbal communication is nearly lost, and frustration may arise from the inability to express thoughts or emotions.
Caregiver Focus: Caregivers should focus on providing comfort through touch, tone of voice, and other non-verbal forms of communication.

7c: Loss of Ambulation

Description: The individual loses the ability to walk without personal assistance. They may still be able to stand briefly with support but cannot walk independently.
Impact: Mobility challenges increase the risk of falls and pressure sores due to prolonged periods of immobility.
Caregiver Focus: Assistance with mobility becomes essential. Caregivers may need to use wheelchairs or other mobility aids and ensure proper positioning to prevent discomfort.

7d: Inability to Sit Up Without Assistance

Description: The individual can no longer sit up independently. Without lateral support (such as armrests), they will fall over.
Impact: This loss of core strength makes it impossible for the person to sit upright, increasing dependency for all activities.
Caregiver Focus: Caregivers must provide full physical support during sitting and ensure proper seating arrangements to avoid discomfort or injury.

7e: Loss of Ability to Smile

Description: The ability to smile is lost. Facial expressions become limited to grimacing or other non-specific movements.
Impact: Emotional expression is profoundly affected, making it harder for caregivers to interpret feelings or responses.
Caregiver Focus: Caregivers should focus on maintaining emotional connection through soothing tones, gentle touch, and eye contact.

7f: Loss of Ability to Hold Head Up Independently

Description: The individual loses the ability to hold their head up without assistance. This reflects severe physical decline and loss of muscle control.
Impact: At this stage, individuals are entirely bedridden and require complete care for all aspects of daily living.
Caregiver Focus: Caregivers must ensure proper head and body positioning to prevent discomfort and complications such as bedsores or respiratory issues.

Key Characteristics Across Stage 7

Stage 7 is marked by total dependence on caregivers for all aspects of daily life, including feeding, hygiene, mobility, and communication. Individuals in this stage are often considered appropriate for hospice care due to their extensive care needs and limited life expectancy.

Caregiver Considerations

Your role as a caregiver becomes so important to your loved one. You are their lifeline and bring them so much love and comfort. At this stage, their physical appearance (unkempt, bad breath, flaky skin) might cause you to hesitate to touch them. That is so very normal!

I had that same feeling … and then felt bad about it because all my mom wanted to do was have me hug her and hold her hand. That physical touch was a way of giving her reassurance and for her to share her love. I was swirling in a sea of grief and loss - and relief that we were nearing the end (another source of guilt!) - and had to work hard to walk in her shoes, to think about what she needed … and what I’d want if I were her.

Here are some gentle guides of ways that you can continue to show the compassion and love you’ve provided at every step along the way:

Communication: Use non-verbal methods like touch, tone of voice, and eye contact to provide comfort and reassurance.
Physical Care: Ensure proper positioning, use mobility aids as needed, and monitor for complications such as pressure sores or infections.
Emotional Support: Maintain a calm and soothing presence. Even if verbal communication is lost, emotional connection remains important.
Hospice Services: Consider hospice care for additional support in managing symptoms and ensuring quality of life.

Stage 7 represents the final chapter in the dementia journey. While it is a profoundly challenging time for both individuals and their caregivers, focusing on comfort, dignity, and connection can provide meaningful moments, even in this advanced stage.

I actually had some of the best conversations with my mom during this stage. Growing up in a single parent household as an only child meant that she and I were very close. So while she couldn’t talk a lot, she could nod, her eyes still twinkled when she could no longer smile, and I could interpret her facial expressions pretty well. About two weeks before she passed, she mentioned “a spot”. So I just started saying things to figure out what she meant (X marks the spot, etc..). I said “Run Spot Run” and she gave me a look that clearly said that she was not a child (LOL). And then I asked, “do you want to make sure you have a spot in Heaven”? And she looked at me very seriously, pointed her finger at me, and said “NOT YET”, very clearly. So I smiled and said, well that was clear - and she smirked.

Focusing on What Remains

Even at this stage, as you go through this process of assessment, try to focus not just on what's been lost, but also on what remains. Your loved one is still the person you've always known and loved, even as dementia changes their abilities and behaviors. Look for ways to connect that don't rely on memory or complex skills. Maybe it's listening to their favorite music together, looking at family photos, or simply holding hands. These moments of connection are precious and meaningful, regardless of the stage of dementia.

Not long after the “spot” conversation, my mom told me that she wanted to give me a gift. I responded that having her as my mom was the best gift and I didn’t need anything else from her. She snorted - telling me without words that she thought that was ridiculous, that was her job.

As she napped, I researched on my phone what “giving a gift” could mean for someone in the very late stages of dementia. And several articles indicated that “once a parent, always a parent”, and that to protect me she might seek to pass away when I wasn’t there; to spare me from having to watch.

After she woke up, the hospice nurse arrived. And I’ll never forget the look of shock on her face when I had the following conversation with my mom. “Mom, when I was younger we had a dog named Patches - she was your dog … often growled at me when I got into her space.” [My mom made a noise like she was laughing at that memory so I realized she remembered.] “When Patches got cancer and we had to put her down, you [my mom] were not able to be there with her because you were too sad. So I offered to go and hold her paw while you stayed in the waiting room. Mom, I want to be here to hold your paw when you are ready to go. It is ultimately your choice and I will respect whatever decision you make. But if I get a choice, I really want to be here with you.” My mom made a noise that clearly came across as “I’ll take that under advisement and will think about it.”

And on the day that she passed, she waited for the hospice nurse to step out of the room and passed within minutes - with me there by her side. It was a beautiful experience; I could feel her peaceful energy in that moment. That was a true gift.

The Journey Ahead

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.

While it’s heartbreaking to witness someone you love fade before your eyes, understanding their stage allows you to provide better care while cherishing meaningful moments together. So as best as you can, focus on what remains rather than what has been lost—whether it’s sharing a smile or holding hands during quiet moments—and remember that your love and support are among the most powerful forms of support you can offer during this journey.

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,