Tag Archives: Dementia

Dementia and the User Interface

Open Lab at Toronto General Hospital

Open Lab at Toronto General Hospital

At some point in the 1980s, I heard a talk by Bill Buxton about “user interface design.”  Dr. Buxton was one of those unusual folks who actually seemed to understand this topic.  For him, user interfaces were all about designing human environments.  Computer system efficiency was only a secondary consideration.

As I recall, he spoke at some length about  artificial limbs and other prosthetic devices.  He stressed that their primary purpose is to support  a recovery process.  They should only be used to replace a body part or function when recovery is simply not possible.

By analogy, he said that computer systems can support us in finding ways to improve our natural human environments – our lives in other words.   However, it’s easy to get carried away, and lose touch with the joys and challenges of everyday life.

I would like to add that these questions become more urgent for people with dementia –  and for their friends and caregivers.  What can we do help these people connect with each other in meaningful ways?  Here are two contrasting examples:

Open Lab at Toronto General Hospital

Dotsa Bitove Wellness Academy


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Investing In Aging

462657392_640There is widespread advocacy and awareness for positive aging, and billions of dollars are raised annually to support this cause.  Most of the money is spent by scientists and engineers who focus on eradication of diseases and/or relief of undesirable symptoms of aging.  

We are making the case for shifting some of this money – even a small fraction of the total – to support transformational approaches (e.g. collaborative arts-based research programs).  Such approaches not only lead to dramatic improvements in quality of life, but also enable people to be socially productive and creative while coping with their disabilities.

Hesperus Village is one inspiring example.  I have collected some others using the Aging tag on the sidebar.

Dementia And Collective Disruption

cracked

Collective disruption in action

It is widely known that success in the technology industry depends on the ability to disrupt markets and eliminate traditional competitors. The very concept of the “mature” industry is now obsolete – markets are in constant flux.  Even large firms like IBM are continuously forming new partnerships and re-inventing themselves in the process.

Organizations that look after the needs of our elders, however, have been largely unaffected by this trend.  Even high-end services have been commoditized.  Wealthier seniors may have a longer list of menu options, but the basic system design is pre-determined.   Will that be vanilla or chocolate, madam?

So, it was with great interest that I discovered Collective Disruption,  a joint creative-research endeavour among health researchers and artists.  Readers of this blog will know that several months ago I posted a video about their Cracked theatre production – creating a space to grapple with difficult questions.  I finally got around to seeing a live performance in Hamilton yesterday. How refreshing to see researchers, actors and people affected by dementia collaborating with a playwright, and what a stirring result!

This group embodies our core value of prevailing personhood.  In one scene from Cracked, a daughter comes to visit her mother, who now has advanced dementia.  She is very hesitant to approach her, and says, She was my hero.  The father, who is holding his wife in his arms says, She still is my hero.  Nothing here is easy, comfortable or predictable – it’s all so inefficient. Still, the collective disruption of dementia brings everyone together on a new level of understanding.

 

The Economics of Alzheimer’s

220px-Alois_Alzheimer_003Aloysius Alzheimer (1864 – 1915) would be astounded to learn that 100 years after his death, his surname has become a household word.  Although “Alzheimer’s Disease” is often confused with normal brain aging and senility, it is a useful label, and focuses public attention on the needs and concerns of an aging population.

Yesterday (September 21) was Alzheimer’s Day, and two interesting links showed up on my Twitter feed.  The first link was tweeted by Reza Moridi, Ontario Minister For Research and Innovation: Investing in brain research to improve the diagnosis & treatment of Alzheimer’s.  From the News Release: This major investment is part of the province’s ongoing support to the Ontario Brain Institute (OBI). The not-for-profit research centre brings together multi-disciplinary, patient-centered research teams to make advances in neuroscience that improve the lives of those living with brain disorders.

The second tweet was from the Arts Health Network (AHN): How can the #Arts help with #Dementia?  This group comes at the problem from a very different angle..  Instead of (or as well as) medical and pharmaceutical intervention, they state that the creative arts can be part of the solution.  This approach is certainly much closer to the strategies described in this blog.  Art activities do more than keep people busy. They build skills mastery, result in art products people can take pride in, foster a sense of self, create social networks, and much more.

Personally, I would like to see a greater proportion of available funding go to the second stream of activity.  However, the AHN do not make a very good case.  In fact, they rely on the same economic theory used by the big boys: the investments will pay for themselves in terms of increased workforce productivity.  People today are so mesmerized by this mantra!.  The whole point of engaging in the arts is to transform human lives.  Instead of being needy patients, elders are empowered to renew and regenerate our culture.

Alzheimer’s: More Fear and Dread

Fix the brain, fix the person?

Fix the brain, fix the person?

Here is an excellent example of the current Alzheimer’s fundraising campaign – very slick indeed.  What is Alzheimer’s disease?  The video strongly reinforces the notion that Alzheimer’s is a disease that can be attacked and cured.  It is very sad that our leading scientists and researchers have adopted such a narrow, reductionist view of the human being.

Neuroscience and its associated technologies have an important supporting role to play as we improve our understanding of human aging.  On this blog, I am featuring stories about people who are playing a leading role.  What happens when we recognize and honour prevailing personhood, even in cases of cognitive decline?  What new thresholds of human experience open up before us?

I have collected some of the relevant stories under the “dementia” tag.  (See sidebar.)

Aging Is Not A Disease

People are now realizing that child behaviour “disorders” are in fact not disorders at all.  A recent video, Childhood is not a mental disorder, tells the story very powerfully. Growing up is a turbulent rite of passage – and it is a right of passage.  Our efforts as parents and educators to suppress it are counterproductive, to say the least.

music-head-human-notes-coming-out-white-background-42184328It is not so easy to realize how many aging “disorders” are in fact natural processes.  Millions (billions?) of dollars are spent to “cure” aging, and most of this completely misses the point. Peter Whitehouse, for instance. explains that the widespread hysteria relating to Alzheimer’s disease is largely unfounded.  (Watch his videos about the Myth Of Alzheimer’s.)

As Bernard Lievegoed explains, aging is nothing to be feared, particularly if you have been spiritually active in the earlier phases of life. (See “Key Concepts” tab.)  Aging brains often present  difficult challenges, but this does not diminish the value of the person.  It just changes the level of communication.

Apple blossoms, summer foliage and ripe apples bring me joy – and perhaps some sadness when they wither and fall to the ground.  And yet what power rests in that tiny hard seed?

 

We Are Not Ourselves

Details from William Utermohlen’s self-portraits

DETAILS FROM WILLIAM UTERMOHLEN’S SELF-PORTRAITS

I am not myself. What is it to be “oneself?” What is this self, this “me”? What do we mean when we say “I”? When we lose our mind, where is it to be found? When we go out of our mind, where do we go?

There is so much being written and discussed about dementia.  For a fresh approach, I encourage you to read Nicci Gerrard’s article in The Guardian: Words fail us: dementia and the arts. She challenges us to have empathy – to enter into the experience of people who have dementia.  We can never understand dementia, but as we peek across this threshold, we can learn much about the mysteries of human consciousness.

The child learns to shape sounds into words and make boundaries around things; they tell stories and impose a narrative pattern on to chaos. Only in this way can the flooding world be comprehensible and endurable. But the demented person unshapes, undoes, disintegrates, unravels – from the formation of the self and language to its drastic unmaking. Words become mere sound again.

Gerrard gives several examples of how poets, writers and artists who were able to cross the threshold of dementia quite consciously and to communicate their experiences.  Their works can be quite unsettling – yet deeply stirring.

The art that attempts not simply to observe but to inhabit that desolate place of self-loss becomes like an emotional modernism, in which there is no central narrator, no coherent story, where things are fractured and the safe ground slides away beneath our feet. Exploring the experience of dementia and the loss of memory can bring about a powerful, and vertiginously unsettling, way of thinking about time, place and identity, where the notion of a stable reality and a single self breaks apart. Frank Kermode called it “decreation”, where words and meanings are unmade – an apocalypse of the self.

If we learn to follow them into this world of de-creation – with our still-conscious minds – perhaps we will discover seeds for re-creation.

NOTE: CRACKED: New Light On Dementia is another project which works artistically with this theme.