[OSList] OS for Dementia?

Lisa Heft lisaheft at openingspace.net
Fri Nov 8 13:07:14 PST 2013


Doug, I love the way you wonder.
Michael, I echo your recommendation to have clarity in what one's role is. 
Charles, your insight and experience deepens our understanding.

As some of you know, I, too, in my caring for my parents, had a mother with dementia - and spent (as I still do, with my still-independent father) many hours in a mixed-care-level elders residence and community.
As Charles says - dementia means and is so very many diverse things, and is so completely diversely differently present in each unique individual who has (or has not) been diagnosed with it.

For some, it is (heartbreakingly to some family members, magical in my own experience of and lens about it), a person being completely and totally in the now, and now, and now, with zero memory of the moment before now. For some, it is one day acting like a sweet little old man, and the next day acting like a scary angry frighteningly mean creature who looks a lot like your father. For some, there is nothing you could read by looking, so you may or may not feel they are 'in there'. Some may recognize their loved ones, some may not, some may shift back and forth. And there are a million more uniquenesses.

My real question to you, Doug, is to any facilitator who sees a need, wishes to serve. 
And for this, I go right back to how I look at all facilitation, leaving the 'how' - the selection of process - for last. I start with the analysis. Questions.

Who is this for? Is it your need / vision for them that is driving this, or are they asking for this? Is it to serve a need that they are articulating? or that you are assuming?
Are they fine, exactly as they are, in themselves?
Is it their families who might need something? Are their families yearning for them to be something they cannot be or are not? Do the families need something for themselves - perhaps a way to articulate a shared-yet-diverse experience? 

If so, what is the time available for - whomever you will be working with? What is the environment? 
(quiet? private? people walking or wheeling through speaking in loud voices to themselves or others? distracting sounds? differing medication schedules? rooms in a facility that are used for food + recreation + meetings + quiet time, all in the same room, all at the same time? lots of wheelchairs? clear pathways?)
Is there ability to 'opt out', for those who do not have voices or ability to move their own wheelchairs or find their own way down the hall?

These and a million other things would be my questions, before knowing who has the need and asks for the service / would benefit from it, what are the physical or time or multi-tasking boundaries, all that, and more. Before ever selecting an existing or designing a custom dialogic process.

One of the things I observe really works well (my observation is visual and intuitive - I cannot know from inside peoples' own thoughts) - is an activity that each individual can be present for (if they are able) in their own unique individual way. My dad plays jazz piano for the health center patients and the Alzheimer unit where he lives, on a regular basis. With music, you can see muscles relax, people who would have seemed catatonic sway, little smiles on some faces that looked otherwise set. With an art class a wonderful daughter provides on a regular basis, individuals touch things, or do things, or just look at things, or are just around others doing creative things - in the same room, but each in her or his own unique way.

In this way the piano player or art volunteer are not trying to 'help' people 'do' anything, or have the group do anything together - but instead, are providing a nutritious and be-however-you-are environment. And what I observe is a group of amazingly diverse people, in their own space and in a shared space, with no task, no 'outcome', simple being. With love surrounding them.

Lisa





On Nov 8, 2013, at 10:41 AM, Charles Morrow-Jones <morrowjones at gmail.com> wrote:

> I've been lurking quietly on the list for a while now, but feel compelled to speak on this topic, since my father suffers from dementia.
> 
> Please tread cautiously - dementia is not a single monolithic condition, but rather ranges from somewhat mild forgetfulness to delusional states for some, and near-catatonic states for others.  It encompasses Altzheimers and a variety of other diagnoses.
> 
> I would suggest that OST could be highly useful for dementia *caregivers* and that those folks, rather than the dementia sufferers, should be the focus.
> 
> 
> 
> On Fri, Nov 8, 2013 at 12:52 PM, Elisabeth Tepper Kofod <elitepperk at gmail.com> wrote:
> Dear Doug... what a wonderful title!
> I have been revolving around the idea of opening space for families and our issues.
> With love
> Elisabeth
> 
> 
> On Fri, Nov 8, 2013 at 11:39 AM, doug <ost at footprintsinthewind.com> wrote:
> Friends--
> 
> Have been thinking that a population OST could serve in a major good way is among people who have dementia. How?
> 
> Perhaps we have a mixed group of people with dementia living in a congregate housing setting and teenagers. We gather them in a circle and do the normal things. The teenagers could help the oldsters remember the instructions and post topics. The title could be “Issues and Opportunities with Growing Younger Every Day.”
> 
> How, if at all, would you change the normal format of OST for this group? What other mixture of people would you invite? What other titles?
> 
> Perhaps we could get family members to gather with them around the topic “Issues and Opportunities to Still Be Family” or “Meet Me Here Today.”
> 
> I wonder.... I invite you to wonder with me....
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> -- 
> Elisabeth Tepper Kofod
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