Dementia Narratives & Legacy Projects

DN ❤️ Letter 03 :: Anosognosia

Does early diagnosis impact access to support and quality of care?

A close friend confided to me this week that “something’s wrong.”

He’s doing things he never would have done in the past, she said.

At 55 years old, she suspects the lapses in judgment she’s noticing in her husband are early signs of Alzheimer’s. Although I hope for them that her suspicions are wrong and there’s another explanation, I trust her intuition.

We sat quietly for a few minutes, contemplating what might lie ahead for them.

Last week (May 16 -22 2022) was Dementia Action Week, the Alzheimer’s Society’s annual awareness campaign. This year’s focus was on the importance of diagnosis, and there was a lot of interesting discussion about it on social media channels (search #dementiaactionweek).

One post asked questions I’ve been turning over and over in my mind:

Does emphasis on early diagnosis matter given the current state of adult social care?

Does it have an impact on access to support or quality of care?

My first thought was an emphatic yes!

Given the current diminished state of social care, early diagnosis is the only hope we have of accessing limited supports when we need them the most.

The unkind truth is that our social systems are not prepared for the crippling shift that’s underway in our communities, hospitals, and long-term care facilities. Where I live in western Canada, hospitals are overwhelmed with elderly patients waitlisted for publicly funded long-term care facilities.

While they occupy desperately needed acute care hospital beds that are not equipped to provide specialized dementia care — sometimes in overflow areas like hospital hallways and dining areas — the average wait for transfer to long-term care is 1.5–2 years.

Two years!

In this context, a delayed diagnosis forecloses on options you don’t even know you’ll need to consider in late-stage dementia. Signing on to that waitlist for home supports or residential long-term care when you urgently need it is far too late.

**

The caveat to this is that you need to be receptive to accessing support and make an effort to understand what that actually means.

There’s a lot to learn.

What is dementia anyway? How is dementia diagnosed? What happens next? What kinds of services are available, publicly or privately? Locally or elsewhere? What will it cost? What can we ask for help with? When should we ask? How do we access those supports? What if support isn’t available?

For many of us, navigating the ins and outs of public health systems is complex and overwhelming.

**

As I pondered the benefits of early diagnosis, I realize that we had confirmation early enough — more or less — about Dad’s dementia, but it didn’t change the ugliness as his dementia progressed.

We were unprepared. Naive. Stubborn.

Stubborn enough to think that for us this could be different.

When we walked into the Cottonwoods dementia care facility a few years ago, we were given fair warning.

In the sun-filled, white-walled atrium at the main entrance of the facility, we were greeted by disengaged residents haphazardly parked in wheelchairs; absentee expressions on their faces, chins on their chests, gazing at their feet in silence.

It was a welcoming committee for a party no one wanted to be at.

We walked through the crowd casually, smiling quietly, feeling awkward as we (Dad included) were escorted down the hall to the clinician’s offices to talk about Dad’s test results and dementia diagnosis.

How much time do we have, we asked?

Impossible to say, they answered. It could progress rapidly or he could be stable for many years. They offered to start the process of establishing connections to supports and services, but Mom declined. Not needed, she said. They could manage.

Dad was still a strong, active man at that point. He looked nothing like “those people” confined to wheelchairs.

We should have been able to reconcile that the difference between then and now, us and them, was not as big of a divide as it seemed at the time. That despite our uncertainty about what that chasm of time would look and feel like, the outcome is inevitably the same the vast majority of the time. We had their experience to learn from, and we chose not to pay attention.

We just couldn’t relate to what we were being told.

The clinical guidance and visual of “old age with dementia” did not help us connect the dots.

We listened to the social worker’s advice, kindly accepted the information leaflets, and then retreated back to our quiet lives.

**

The lesson, ultimately, is that dementia will progress, whether you choose to acknowledge it or not.

By the time we understood that talking about and planning for ‘what-ifs’ are vitally important when dementia makes an appearance in your life, it was too late to have a meaningful conversation with Dad about it.

We should have asked him long ago what he wanted this chapter of his life to look like. He was too stoic. We were too polite.

**

While Mom perpetuated willful denial as the disease progressed (everything’s fine, we can manage), Dad’s pride exacerbated a different challenge that is common in dementia.

Anosognosia.

I love learning new dementia words!

My personal favourites are ‘snork’ and ‘bersy’ (stories for another day). My introduction to ‘anosognosia’ is courtesy of Adria Thompson, a Certified Dementia Practitioner who offers tips for caregivers and medical professionals (look for @BeLightCare on Instagram).

Anosognosia in mental illness is when someone is unaware of their own mental health condition or can’t perceive their condition accurately. It is common to a vast majority of people with advanced dementia, who lose the physical ability to understand the realities of their own condition.

Someone who has anosognosia might insist they do not need help and are fully capable of performing daily activities independently, despite clear evidence to the contrary.

It’s another reason why early diagnosis is so important if you want to be able to make your wishes known and proactively direct your own care.

**

It may be impossible to know exactly when dementia starts, or how long we will live with the disease. But until there is a cure, we instinctively know how it ends.

The question should be then, what do we choose to do with the time in between?

a) Ignore the issue and hope for the best?

b) Reach out for help?

c) Arm ourselves with information?

d) Make the most of it?

**

To me, the most important reason for early diagnosis is that it can improve the quality of the time we have before needing advanced dementia care supports and services.

I truly believe that there is both beauty and beast in the experience of dementia, and the single biggest reason why early diagnosis is so useful is because it gives us more time.

Time to be intentional about what we want this chapter of our lives to look like.

Time to enjoy each other’s company.

Time to plan for the days ahead.

Time to tell your stories.

**

Taking the first step

“If you or someone you are close to is experiencing potential symptoms of dementia, you are encouraged to act on it and seek guidance this Dementia Action Week (16 to 22 May 2022).” — The Alzheimer’s Society.

When Adrian and I talked about what she should do with her suspicions about her husband’s mental health, we both came to the same conclusion.

Start a notebook, we agreed.

In the very early stages of dementia, that first step toward diagnosis might be as simple as keeping a journal or logbook to track what you are observing.

Those odd little things that you notice in your own, or someone else’s, cognitive function and behaviours might reveal a pattern over time. Make note of the dates and circumstances for each observation. A logbook also provides a very useful starting point for discussion when you are ready to see a physician or other clinical resources about your concerns.

Changemakers

For me, a logbook became a lifeline. When we became Mom and Dad’s full-time support, writing helped me track the progression and made me more perceptive of the details in our otherwise blurry days. It provided a space to organize what we were learning about dementia, about Dad, about health care and family dynamics in caregiving. It helped me process the emotions and make sense of the chaos.

By keeping a personal journal, we are engaging in a form of self-care that helps to process and cope with the tough parts of our days. By sharing our stories, we can support each other and advance dementia care through learning from lived experiences.

**

Do you have an ambition to explore and document your story? Whether it’s about your experience with dementia, or perhaps a biography of your life before dementia, or maybe a memoir to honour someone with dementia?

In May and June, Dementia Narratives will dive into the idea of legacy projects, and the many ways that we can explore, document, and share our stories (hint, you don’t need to be “a writer”).

Plus, this month’s Changemakers membership bonus is personalized support to help you get started on your — or your parent or spouse’s, etc. — biography.

Available free to all Dementia Narratives subscribers.

Send me an email if you are interested (dementia.narratives [at] gmail.com). I’ll send you guided prompts, we can follow up with a phone conversation to flesh out the details, and I’ll put your biography together for you in a digital file that you can print and expand on.

With love and gratitude,

If these ideas have sparked some thoughts, feel free to start a conversation in the comments here on Medium, or in the comments for this post at dementia.substack.com ❤️

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