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The disremembered

Dementia undermines all of our philosophical assumptions about the coherence of the self. By Charles Leadbeater.

Photo of Marije Haas
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This is an essay from Charles Leadbeater on Aeon.co: https://aeon.co/essays/if-your-memory-fails-are-you-still-the-same-person

"Instead of squeezing people with dementia into complicated systems designed for people who can remember who the President is, we should find kinder, less judgmental ways to be with them. We, the lucky people who are yet to fail the memory test, will benefit too, by learning to make ourselves available to the physical, expressive and relational aspects of our own identities. Put simply, we should avoid the temptation of becoming memory snobs, as any of us could find ourselves downwardly mobile so far as memory goes."

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This is an image from the Site of Reversible Destiny, Japan. The concept of this site is based on a theory of “Procedural Architecture”, as developed by Arakawa and Gins. Procedural Architecture can be clarified by the notion of procedural knowing; walking, talking, and eating are examples of procedural knowing.

Procedural Architecture brings into question an occupant’s procedures and steers him or her to examine the actions, or subroutines, he or she takes, thereby causing her to doubt herself long enough to find a way to reinvent herself.

It’s this reinvention that is interesting. Alzheimer patients lose their “procedural knowing”. If we can create an environment where this lack of procedural knowing is the norm, then this creates a situation for the carer and the patients to be together, on even ground.

What is a provocation or insight that might inspire others during this challenge?

Can we create equal experiences that healthy people can have together with people living with dementia? Can we remove the hierarchy between "healthy person" and "patient"?

Tell us about your work experience:

Designer and now design researcher (PhD)

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Photo of Susan

This provokes the question what is "healthy?" And can we remove the stigma and the idea that people who live with dementia are "different" than people who do not?

Photo of Marije Haas

Indeed. Removing this stigma is a difficult I think. People living with dementia can behave in "challenging" ways, and the usual responses often don't work. Pointing out the facts "what just happened" is not really effective for example. It may be possible to create awareness and teach more useful ways to respond to challenging situations caused by dementia, but I have no idea how we could go about that without labelling the person with dementia – which would be terribly undignified.

Photo of Susan

I believe we have to challenge the belief that challenging behaviour is caused by dementia :)

Photo of Marije Haas

Hi Susan, the way I understand it is as follows: the challenging part of the behaviour is that people with dementia no longer behave the same way as they did before the dementia, the dementia is affecting their brains, literally. Thus challenging behaviour is caused by dementia. Understanding this, and trying to accept that your loved one is changed – but it is not their fault – is, I think, important.

Photo of Susan

Hi Marije, I see your logic, but it's much more complicated than that.

First of all dementia is not a cause of anything. Dementia is a set of symptoms caused by a number of other diseases or conditions including Alzheimer's disease, Parkinson's disease, brain injury/trauma, alcohol, etc. In the elderly, dementia can be caused by a urinary tract infection (in which case, the symptoms can be eliminated with antibiotics).

More on dementia here: http://www.dementia.com/causes.html

Because Alzheimer's disease is the most common cause of dementia, people often use the two terms interchangeably.

For simplicity's sake, let's be specific and talk about Alzheimer's disease and related dementias (ADRD).

Here is my way of understanding it:

Yes, ADRD causes the brain to change, which in turn causes people to process things differently than they did before, memory loss, vision changes, confusion around orientation to time and place, etc.

Each of these factors and all of them together result in the person living with dementia (PLWD) to not be able engage with life and attend to activities of daily living as they once did.

Let's use the example of bathing. At some stage the PLWD needs help to shower or bathe herself. However, because of the brain changes she may not understand she needs help. Someone who is a stranger to her (could be a family member she doesn't remember), approaches her and says "It's time for your bath," and starts to undress her.

Most "normal" people under the same circumstances would resist. I conducted a "mirror" survey on challenging behaviours; the results are here: http://myalzheimersstory.com/2017/06/01/4-minute-survey-results-debunk-decades-long-notion-that-bpsds-are-symptoms-of-dementia/

You are right about many caregivers not understanding the fact that the PLWD's brain has changed. So they persist in trying to remove the PLWD's clothing. The PLWD resists more, and may even strike out at the caregiver. The PLWD is then labeled as "combative."

It's been shown in many studies and I know from personal experience, that if the caregiver changes her approach, the resistance, combative behaviour or other behaviour that is problematic for the caregiver (i.e. the "challenging" behaviour) can be eliminated. Note that the "challenging" behaviour is challenging to the caregiver, not to the PLWD. That's why many people are changing the way this type of behaviour is labeled and called these behaviours "responsive behaviours" or "personal communication." A useful way of looking at is "behaviour is communication," as pointed out by the person who posted the New York Times article.

Here's a vignette of what this might look like in a LTCF through the eyes of a PLWD: http://myalzheimersstory.com/2016/04/26/waging-war-at-alzheimers-bath-time/

Here's an example of how the approach makes all the difference:

http://myalzheimersstory.com/2015/08/28/teepa-snow-demos-10-ways-to-calm-a-crisis-with-a-person-living-with-alzheimers-dementia/

I would agree with you that understanding and accepting that the PLWD's brain has changed, and understanding the implications of that are important. Equally important is understanding how my behaviour as a caregiver, as well as other factors such as the physical environment (per your example above) impacts the PLWD and results in behaviour that I as a caregiver might find problematic or challenging is in fact a normal human response to a set of particular circumstances or conditions whether the respondent has dementia or not.

Many caregivers have found these questions helpful in understand the ways behind "aggressive" behaviours: http://myalzheimersstory.com/2015/04/19/20-questions-that-help-explain-why-people-with-dementia-get-agitated-and-physically-aggressive/

All of that said, the PLWD's changing brain exacerbates the likelihood of them behaving in ways that others might find challenging/problematic.

Photo of Marije Haas

Hi Susan, you are right of course! So some good steps forward for this challenge could be to:
a) make sure carers understand why people living with dementia behave the way they do
b) find a way for carers and people living with dementia to be in the moment, together.

This is not simple, and ethics also come in to play – but that is for another time!
You have some very interesting sources to work with there, thank you.

Photo of Susan

Yes.