Dual Realities of Dementia Care: ‘He’s There, But He’s Not’

Let’s explore a facet of dementia care that often leaves caregivers with conflicting emotions: the co-existence of presence and absence. Dementia is a reality where two diametrically opposed things can be true – he’s there, but he’s not there. 

I’ve heard that so many times as a Board-certified Patient Advocate. “Mom’s there” or “Dad’s there,” but “they’re not.” At least not how they used to be. What’s worse, as our loved ones transition to later stages of dementia, they’re more likely to meander in and out of a lucid state. So moments when they seem “there” may be fleeting or cause a false sense of hope.

I feel it in my personal life, as well. Brian, my life partner/care partner, has entered the final stage of his Alzheimer’s and vascular dementia journey. Some moments, he’s alert, aware and even charming, just as he was back when he would speak confidently in front of large crowds. Other moments, he sits in silence, confused, unaware of pretty much everything around him, and can sometimes be aggressive.

It’s a profoundly sad reality – but reality nonetheless. It’s the paradox that loved ones and care partners of persons living with dementia experience daily. Many see their loved one there physically, but their intellectual, emotional and spiritual energies erode piece by piece with time. 

Let’s delve into these dual realities of dementia care, work to understand these powerful emotions, and discuss some caregiver coping strategies.

Dementia Care: Understanding the Ebb & Flow of Awareness & Cognition

Your loved one is physically present, yet there are moments when it’s obvious they’re slipping away. This paradoxical dance between lucidity and confusion can be emotionally challenging for dementia care.

Here are some reasons for meandering awareness and cognition with Alzheimer’s and other types of dementia.

1. Neurological Changes

Dementia, in its various forms, brings about significant neurological changes. It’s the slow and steady death of the brain. As neurons misfire and synapses disconnect, these changes create a shifting cognitive landscape where moments of clarity coexist with periods of confusion. 

Understanding this manifestation of the disease is crucial. Strong brain activity can be followed, in short order, by weak brain activity. And vice versa.

2. Environmental Triggers

Environmental factors can trigger fluctuations in cognitive abilities. Changes in dementia care surroundings, disruptions in routine or sensory overload may contribute to moments of disorientation. 

Identifying and mitigating these triggers can create a more stable environment. Sometimes a shift in lighting or moving to a different room can restore alertness and calmer brain activity.

3. Stress & Fatigue

Both care partner team members and dementia care recipients can experience heightened stress and fatigue. These factors may contribute to variations in cognitive function. 

Implementing stress-reduction techniques and ensuring adequate rest for everyone involved can make a significant difference. It may be difficult to keep a sleep routine for a loved one with dementia, especially if they’re suffering with sleep issues like sundowning, night terrors and hallucinations. But there are ways to nurture a more tranquil, sleep-inducing environment.

Coping Strategies for Caregivers of Dementia Care Recipients

On the care partner side, I always advocate for services like respite care, counseling and spiritual guidance to take a break and unpack powerful emotions. As a care partner of someone in dementia care, your experiences and feelings ARE NOT insignificant. 

Your loved one is “there,” but simultaneously “not there.” Traumatic? That’s an understatement. So here are a few ways to cope:

1. Embrace Each Moment

Acknowledge and appreciate the moments of clarity. They’ll happen less frequently and then not at all. If your loved one is present in the moment, just enjoy it. It’s a gift of more time with your loved one. 

Enjoy the foggy moments, too. Understand the shifts in cognitive function are not within your control. There’s no cure – and not that I would dissuade you – but you’re not likely to be the one to find it.

2. Flexible Communication

Adjust your communication style based on their cognitive state. Use simple, clear language during moments of confusion.

It should come as no surprise that your loved one will slowly lose the capacity to communicate effectively. Recognizing this loss as a steady regression, you’ll be able to orient your communication to their current state. Eventually, you’ll need to learn to communicate non-verbally as they’ll likely rely on gestures, eye movement and indistinguishable vocalizations. 

3. Create a Calming Environment

Minimize environmental triggers that may contribute to confusion. If possible, establish a familiar and soothing routine. There’s some debate as to whether a routine or letting the day take its course is better for dementia care. That may be a matter of preference.

Whether there’s a routine or not, a relaxing environment free from overwhelming factors would benefit everyone involved.

4. Build a Support System

Connect with other caregivers who understand the challenges of dementia care. There’s something therapeutic about just talking. Unpack your mental baggage, and choose fellow care partners who embrace being supportive.

Sounds a lot like building the perfect team, right? Well, that’s exactly what it is – and it’s essential in life-care planning for everyone aging in good or poor health. Seek professional support when needed, such as through support groups or counseling.

5. Practice Self-Care

Prioritize your well-being to navigate the emotional challenges. Take breaks when needed, and don’t hesitate to ask for help.

Dementia care requires resilience and a compassionate approach. Care partners can more easily deal with these dual realities with some planning and self-care.

6. Document Patterns

It’s amazing how many things in life that could be made better by a little documentation. Yet it’s even more amazing how many people rely on memory alone to keep their thoughts and tasks straight.

Keep a journal to identify patterns in your loved one’s cognitive fluctuations. Use this information to anticipate and manage challenging moments. Additionally, doctors and other care professionals can rely on the certainty of documentation. No medical professional wants to advise a care decision based on vagaries and estimates. 

Embracing the Dementia Care Journey – Its Ups & Downs

As care partners, it’s important to acknowledge that the paradox of presence and absence is an inherent part of the dementia care journey. Your loved one is “there,” but “not there” at the same time. They may emerge from the fog for brief stints, but those will certainly grow fewer and farther between. 

Approaching the end, persons living with dementia may even experience “terminal lucidity,” which for some reason restores cognitive function in the hours or days before death. Happy as those moments may be, the only miracle is their potential for temporary reconnection. Dementia is still 100% terminal.

Millions of dementia caregivers live this reality, so you’re far from alone. It’s a journey that demands flexibility, empathy and a deep well of understanding. That understanding must include being truly prepared for its ups and downs. 

If you need help, contact a Board-certified Patient Advocate like myself to tackle the life-care planning process and guide you through complex emotions.