Friday, May 15, 2009

Some thoughts on our last morning

Dear Colleagues:

I woke up this morning realizing that for me, the learning here has been to see how any truly successful approach to transforming activities needs to be encompassing, from individual learning to a societal shift of perception and policy. I made these notes, recognizing that my understanding is surely very partial compared to those of you who have been focusing for decades on these questions. I hope that beginner's mind will be of some value!

All best,

Arlene
arlene@arlenegoldbard.com

* * * *

Transforming activities is an encompassing process, involving every dimension from individual awareness to a global transformation of understanding and action. Instead of treating public issues like private troubles, what’s needed are interventions at every level, to relieve the burden on families and reframe aging as a universal human process, not a medical problem. This involves learning, providing services, rethinking institutional practices and changing public perception ands policy from the grassroots on up.

Where the rubber meets the road, everyone has the capacity to transform activities for those in need of long-term care or in structured environments, by “enchanting” even mundane tasks and simple play through creativity, remaining present and responsive to the whole person, rather than treating an individual like the embodiment of his or her deficits.

In every setting, at home or in institutions, key elements of actualizing this potential are:
  • Prioritizing more than physical well-being, giving equal weight to quality of life in all dimensions;
  • Eschewing or supplementing assessment tools and standards of judgment that privilege what is easy to measure while omitting the deeper human story;
  • Valuing and making use of creative individuals such as well-trained community artists, who naturally work in these ways;
  • Choosing and supporting people with the necessary outlook and sensitivities to work with those in need of care;
  • Supporting partnership and leadership at all levels.

But things to need to change to fully realize this potential.

For families and individual caregivers, some key needs are:
  • Education and training in what’s possible, delivered in ways they can receive and use;
  • Encouragement and support in building community, learning from other families and sharing the burden;
  • Aggregating voices to shift public policies to provide meaningful economic and social support, such as policies where money follows the individual, whether at home or in an institutional setting, and a paradigm shift to universal healthcare.

In day centers and long-term care facilities, some key needs are:
  • Supporting leaders in bearing and managing the risk of culture change, being willing to risk failing in new ways rather than settling into familiar failures;
  • Using hiring and evaluation processes that prioritize the needed qualities of openness, presence, caring, responsiveness and understanding;
  • Developing and using assessment tools that measure progress toward what we actually want to happen, not just what someone else thinks is important or easy to measure;
  • Active openness to and support for partnerships with artists, not as a frill but as an integral aspect of care.

For everyone, some key needs are:
  • Reframing our understanding of aging, so that people are not written off as their capacities change, but continue to be seen and valued as whole persons;
  • Transforming media portrayals of aging to convey this deeper understanding;
  • Transforming aging policy at every level, reversing the privatization of suffering to bring about a public culture of care and support.

Monday, April 27, 2009

Gifts?

What if we asked people in long term care if they would like to give a gift to someone...what would it be? To whom? How might they actually go about making/giving it?

Just reading more in this dissertation about the use of plants in long term care, and it turns out that residents tended the plants and then some gave them as gifts to people they cared about. That's fascinating...and so normal outside of LTC.

What's "meaningful?"

I'm reading a dissertation by Emi Kiyota, and thought this quotation might be helpful for us as we think in the tank.

"Meaningful occupations are conceptualized in occupational science literature as ones 'which enhance individual well-being, help establish and maintain identity, and help connect ones' past, present, and future into a meaningful life.'" (Ikiugu, 2005). (21)

and "A series of studies show that decreased mortality and psychological disability occur when individuals feel a sense of usefulness, purpose, and meaningfulness." 22.

Providing choices gives people control over their environment. Choices that actually determine the shape/outcome of something are crucial to well-being.

I would also encourage us to think "relationally." Transforming activities is about providing choice/meaning for elders, AND it is about providing choice/meaning for their care partners (family, friends, staff). These choices and meaning might be different. But part of transforming activities is community building.

Thursday, April 23, 2009

Concert!

What a treat we have for you all as our kick off for the Think Tank...

http://www.pabsttheater.org/paulcebar

Our 2008 Artist in Residence David Greenberger will perform Cherry Picking Apple Blossom Time with the Paul Cebar Stage Ensemble at the Pabst Theater Wednesday evening!

Milwaukee Public Television will film it and combine their footage with a documentary being made on Greenberger's residency for broadcast next November.

Monday, April 6, 2009

Improv Resource

I like this one since it involves movement, sound and creating scenarios:
Applied Improv

Sunday, April 5, 2009

More resources

To follow on Anne's resource list of sites offering conceptual, practical and otherwise compelling challenges I wanted to add:

CCA actions
Learning to Love you More



-nick

Saturday, April 4, 2009

Another resource...

When I saw these, I instantly wanted to invite Denise Iris to the Think Tank...
but we are bursting at the seams. So I include this here as a resource, and we'll try to show a few of these during breaks at the Think Tank.

http://www.minimentals.net/mm.html

Friday, March 27, 2009

Elders and Social Networking

I saw this article today on Linked Senior and thought it might be of interest/helpful to our conversation. There's also an article about elders and social networking as well.

Wednesday, February 25, 2009

Resources to consider #2

I saw this Life Story resource listed in Richard Taylor's newsletter - for those of you who don't know Richard, he's an activist with early stage Alzheimer's.

Thursday, February 12, 2009

creative engagement resources

There are some fascinating things happening on the web, outside the world of "activities" in long term care. I'd love to start a list of them here and have you add any you'd like...

www.tickatok.com
www.instructables.com
www.storybookonline.net
howstuffworks.com
postsecret.blogspot
indexed.blogspot
bookglutton
mathmovesu.com
got character
squiggles books

Wednesday, February 11, 2009

Background Question #5

Do you have three questions you would like to pose to the group regarding the transformation of activities in long term care?

ANSWER FROM BETH T

Does the activity bridge differences and abilities? Is it fun or engaging? How would you feel about participating if the roles were reversed? - if you were the client?

ANSWER FROM ROSE F
What would make activities seamless, natural part of living and integrated versus set apart from living and scheduled in silos? Now I am in an activity. And now I am not in an activity. How can activities be meaningful for the individual and not “one size fits all”? How can we break down the department silos so that all departments are engaged in resident life? Community life!! How can the residential setting be a meaningful part of the greater outside community? So that the setting is just a residential setting much like the houses, apartments and condos in the community? So there is more interaction between the people and events going on in the community at large?



ANSWER FROM KIM C is it desirable to move from a model that is based on structuring discreet activities for residents to one of promoting active engagement in larger-scale projects? what would this look like what stands in the way



ANSWER FROM BETH MA 1) Why do we continue to culturize older adults into childish and herd like activities? 2) Why do we accept the responses (excuses) like....."the people in my grp home, ads, nh love to play bingo and would have a fit if you "took it away" They want to decorate the room in paper hearts for valentines day and always ask why we aren't doing that any more... 3) Can we work on strategies for creating the "urgency" to change?



ANSWER FROM ARLENE G
I'm hoping this is one of those situations where beginner's mind is an advantage, because most of the participants will be far better acquainted than I with the actual existing situation and its inherent obstacles. So, mindful of my ignorance, I offer: (1) Is there a way to think about this that restores to individuals in long-term care a kind of ordinary autonomy; that is, a greater sense that they are free to pursue their own interests (and will be supported in that), rather than ordering off a preset menu? (2) I think of art as sacred play, so not every activity must be purposeful in a practical sense, but can some sense of purpose be infused into activities? (For example, sharing stories with an intention of learning something specific about participants and doing something together that builds on that learning, rather than having random stories.) (3) How can activities advance the aims of those in long-term care being seen as whole people: engaged directly with all the aspects of their characters, even deeper emotions and desires; and engaged with the world outside of care, in real time, rather than steering by the rear view mirror?


ANSWER FROM DEBBIE B
1. How can we get more people on board with the Culture Change movement with activities?
2. How can we transform activities to encompass the baby boomers needs as they start to utilize long term care services?
3. How do we get others to think outside the box in providing activities in long term care?
Basically I'm really looking forward to hearing views of others not in the field of activities as I'm thinking they may pose ideas that have never crossed an activity professionals mind - I'm thinking they may already be thinking outside the box. There not coming into it with any preconceived notions.



ANSWER FROM SHARON N
Can we eliminate the word "activities" in long term care? Why do we not instead use a language that emphasizes using tools for engagement or methods to interact in a meaningful ways? How much do we really know and understand about residents lives and life patterns before we put them in programs?





ANSWER FROM NICK T

How can we best enable open expectations and outcomes as a goal?

What scenarios can we envision that begin with the assumption that anything is possible rather than beginning with obstacles?

What types of sensory experiences and pleasures are transformative?




INTERVIEW FROM STEVE
They might be basic, but

1 - How do you create activities that can span the various ability
levels? Is it possible? Does it matter?

2 - How do you create activities that have an impact. That are not
self contained within the facility?

3 - Can humor be integrated into the activities?

Background Question #4

What are the resources/mechanisms for activities in our everyday lives?

ANSWER FROM BETH T Nature, art making, story telling. music anything that triggers an imaginative response to the task at hand.

ANSWER FROM ROSE F
Our financial resources that permit us to travel, be mobile outside the home for activities like shopping, errands, socializing. Friends and family are a resource. Our cognitive and physical abilities are resources. A kitchen is a resource that gives us the opportunity to fix our own meals, entertain, do dishes, set the table, do laundry, clean. Most homes have computers, and that can allow for endless hours of activities and connections with others. Transportation enables most of us to go where we want to when we want to. So the community at large is a resource and events taking place in that community. We manage our own schedules and calendars. We can pretty much do what we want when we want, including eating, bathing, sleeping, when to get up, when to go to bed when and what we eat. The greater community is a resource, because people are living in the community! Community Life!! So relationships, freedom and choice are mechanisms and resources to our ability to be active as we choose. And in the community, we are more apt to have family, neighbors and friends drop by, offer to assist, etc. Once you are living in a residential setting, people feel you are taken care of and not as apt to visit or offer assistance.

ANSWER FROM KIM C facebook, email, phone, neighborhood resources (riverwest!) fun activities usually get edged out by work.

ANSWER FROM BETH MA phone, internet and video, written communicationn- newspapers and magazines, social networks and in person communication....(right out of our PCC training for ADS programming transformation...ouch!)

ANSWER FROM ARLENE G I'm tempted to answer "everything." The world is jam-packed with ideas, relationships and materials, many of them free for the taking. I don't know how to cram this abundance into a list of resources and mechanisms, but a few free or inexpensive things to access that come easily to mind are: nature, public libraries, community centers, oral histories and storytelling, making your own music, dancing and making new clothes or new objects from old ones.

ANSWER FROM JUDY D A similar answer. Family and friends are my resources for activities in my everyday life. But I also need transportation, media, and paid services (a trainer at the YMCA).


ANSWER FROM DEBBIE B
generally we don't have someone else plan out our days, we do so ourselves. we have more spontaneous activity, but also structured groups ie. taekwondo. Again though it depends on individual interests and abilities. And also our available free time.



ANSWER FROM SHARON N
People, places, things, different environments.




ANSWER FROM NICK T

space and support to be alone or together with infusions of ideas and inspiration from outside oneself as well as outlets for sharing.


Background Question #3

What are the resources/mechanisms for activities in long term care?

ANSWER FROM BETH T

I put on show shoes
yesterday for the first time in my life. I started with a duck walk and played at waddling like a duck. Then I saw well worn deer tracks and lifted my feet high and stepped lightly. I dragged my feet like a zombie, stomped like a bear, all moves informed me. Under my play I was learning new ways to move. Nothing cuts the fear of the new like play.

ANSWER FROM ROSE F
Not sure I can answer this. If I understand it correctly, it is the activity professionals. So again, compartmentalized, and not seen as important nor as everyone’s responsibility. Activities belongs to activity people. So the place operates in silos, and activities belongs in the activity silo—not nursing or social work, or administration. There are more limitations to living an active life than mechanisms for activities. You live in a fish bowl, and need an act of Congress to do anything much outside the box you are in. Again, activities take place INSIDE the building so limited to resources within the facility.


ANSWER FROM KIM C
I think it is usually employee driven but there are probably places that use community partners and so forth.Since traditional health care costs probably drive the lion's share of the budget I am guessing that resources for activities are slim.



ANSWER FROM BETH MA Educational sessions, orientation to facility policies and procedures, association meetings, internet



ANSWER FROM ARLENE G I don't know what level of provision is actually available in a "typical" long-term care facility, but it's hard to see why they wouldn't have access to a range of people, materials and ideas comparable to a community arts center (many of which are able to stretch a dollar a long way).



ANSWER FROM JUDY D Family and friends are resources and support mechanisms. For some of the examples above, it would also include volunteers, media content and activities (i.e. online games), paid services (i.e. exercise professionals), transportation,



ANSWER FROM DEBBIE B
There are many publications, workshops, seminars, conferences, regional, state and national activity associations and the power of networking with other activity professionals. There are many resources for supplies, ie. catalog/on line. Activities are planned out for residents based on their interests, needs and abilities. there are spontaneous activities as well in a nursing homes that promote that. Community resources i.e community theater, arts, etc. They have a lot of available free time in their days to fill with leisure pursuits.





ANSWER FROM SHARON N
Activity staff, other residents, family, other center staff, volunteers, facilities, supplies, equipment.




ANSWER FROM NICK T

Cultural events—brought in or a visit, music, singing, visits from family, assistance with mobility, bathing, eating. Space for solitude, space for companionship, spaces for society.




INTERVIEW FROM STEVE
I would imagine it would be having some kind of connection to the outside world and feeling you had an impact on it - otherwise you'd go insane.

Sunday, February 1, 2009

Background Question #2

Please describe your view of what an "activity" is in long term care.

ANSWER FROM BETH T
An activity is for me any focused effort by mind or body in work or play.


ANSWER FROM ROSE F
In long term care, activities are mostly planned and scheduled and seldom spontaneous. They are planned by staff with time limits. And are activities that may or may not be choices of the residents. Often activities are childish and boring because they have little meaning to the resident. So life is compartmentalized into SLEEP, SCHEDULED ACTIVITIES, and NOTHING, just fritter away. And often meaningful activities that happen outside the scheduled activities are not captured and named as such, for example, a meaningful exchange between a caregiver and the resident. Activities in long term care for the most part take place INSIDE the facility, and seldom in the community at large.

ANSWER FROM KIM C
It seems to me that developing active people rather than activities might be good. I assume that an activity at a long term care facility would be highly structured and not leave too much room for the individual to make decisions about the outcome (but maybe i have just seen too many Simpsons episodes?) Actually, my sister worked at a facility for folks with early stages of dementia. It was a pretty high-end place but management was focused more on expansion than on quality care in her estimation -she did a lot of craft activities, residents watched movies together, an occasional field trip, stuff like that.

ANSWER FROM BETH MA Short term 'engaged' event, an event that engages people, or increases persons' self worth, although unfortunately, many times activities in long term care are events that keep as many people busy as possible while the staff can do their "work".

ANSWER FROM ARLENE G My image of this differs from an ordinary activity in three ways: first, rather than being driven by the participants' own desires, my perception is that "activities" are often organized by others for them, based on what someone else imagines they might enjoy or find edifying. Second, I imagine these activities are more strongly bounded than my own (i.e., "From two to four we'll have a clay workshop"), that shape and duration are imposed rather than organic. Third, my impression is that many of them seem purposeless in a way that could be infantilizing.

ANSWER FROM JUDY D Perhaps similarly… it is activities that feed into one’s well-being, soul and self esteem. In my experience in nursing homes, it could include music (playing, enjoying), exercise, social time with friends, games (especially games that stretch and exercise your mind), reading, watching television (hopefully informative and inspiring PBS programs!), and some online activity especially if it’s connecting with family and friends.



ANSWER FROM DEBBIE B
It is the same things, but they may have to be adapted to your current abiliities and functional level. It is not just BINGO, BIRTHDAY and CHURCH. Having a Red Hat Ladies Club, Romeo Club, having "classes" of things of interest i.e. cooking, decorating, volunteer work, things that bring a sense of purpose and personal satisfaction/self-esteem, whatever. Your residents should determine what activities you provide based on their needs, interests and abilities. Activities encompasses 1:1, independent, small groups, large groups, community outings, bringing the community in. They are designed to meet physical, social, spiritual, psycho-social, cognitive, and emotional needs - all spectrums of total body/mind wellness.





ANSWER FROM SHARON N
In long term care, activities are what we offer to people to keep them from feeling bored. They do not necessarily cause someone to feel successful or productive.




ANSWER FROM NICK T

Separating the term activity for a moment from my assumptions—I think there are parallels to daily activity elsewhere. Times of day accompanying meals or preparations that give shape and rhythm. The other activity I think of is more a management of time—a time allotted to a proscribed event. I think of activities that are set up—set up with parameters, outcomes, products, perhaps expectations.




INTERVIEW FROM STEVE

It's hard for me to imagine. I have no reference but for my grandparents in law. Grandmother-in-law, Maili, liked to socialize. She was kind of a party queen socialite and entertained into her final days. The grandfather-in-law was a painter and started to loose his identity when he had to stop painting. Both worked together on books. I suppose that was the same thing as I do - projects.

Background Question #1

Please describe your view of what an "activity" is in your daily life. Please give examples.

ANSWER FROM KIM C.
- a scheduled walk with friends to the dog park
(rather than, say, a spontaneous decision to go for a walk with the dogs, maybe?)
- a coffee date with a colleague at work.
-I regularly develop and participate in activities for my students
otherwise
helping Josie make dinner
and work about cover it!

ANSWER FROM BETH MA
An activity is an event, a period in time, a destination, that is of interest to me, it may involve current competencies or interests that I have, or it may involve new learning, or it may be purely social and/or relaxation.

ANSWER FROM ARLENE G
My view is pretty literal: any sustained action that occupies me: cleaning the house, writing an essay, taking a walk, making jewelry, cooking a meal, playing charades....

ANSWER FROM JUDY D
An activity for me is something like exercise… something that is important for my well being, my soul, as well as my self esteem. Besides exercise, other activities that I do almost daily include cooking, shopping, working (and working and working), reading, watching (some) television, checking my online communities and resources, and connecting with friends and family.

ANSWER FROM BETH T
An activity is for me any focused effort by mind or body in work or play. An activity is for me any focused effort by mind or body in work or play.

ANSWERS FROM ROSE F
If I am not sleeping, I am engaged in living and any action is an activity—interaction with friends, computer work, reading, cooking, grooming, playing, working, laundry, taking care of children, pets, family, running errands, practicing spirituality or religious rituals, watching TV, exercising, --ANYTHING at all. No limits. Whatever I am engaged in while awake and alert is an activity. And I don’t name it as such. It is just what I am doing. Often spontaneous, not scheduled.



ANSWER FROM DEBBIE B
Activities are every thing you do throughout the day, i.e. getting up, dressing, having meals, reading, taekwondo, exercise, computer use - they are anything and everything that you do that brings you enjoyment and a sense of purpose.





ANSWER FROM SHARON N
For me, activity consists of tasks that need to be completed during the day. I get up, take a shower, get dressed, drive to work, work, drive home, cook dinner, relax, read or watch television, get ready for bed - those are the activities in which I participate in a typical day. They are not necessarily anything that bring meaning to my life except for work as it causes me to feel successful and productive. What is most important to me is not necessarily that I have activities to do but rather that I am engaged in life in meaningful ways - with family, with friends. with colleagues. I need to be engaged socially, physically, spiritually, cognitively, emotionally. I need to be consistently challenged and stimulated.

ANSWER FROM NICK T

Everyday I try and get up early. Before anyone else in the house—my father always said the day can be yours if you get up early and get your bearings before making any decisions.

I stand at the sink at the kitchen window.

With my right hand I flick the switch of the electric tea kettle, with my left I turn on the radio on the shelf just above my shoulder.

I imagine myself at the center of some ergonomic exercise I’ve customized.

I could do these with my eyes closed, yet the pleasure of having that time is never eclipsed. Hearing the sounds of the click of the kettle and then the rolling boil that follows as the dawn turns to daylight are the sights and sounds of my daily activity.


Interview with Steve
Activity? Isn't that every waking moment? Beyond that I think of activities as projects or various sub projects. It can be as simple as cleaning my house, but the more interesting ones involve solving some sort of problem or puzzle. I think of my art practice in that way - constant teasing out of problems and solving them.



Welcome to the CAC Think Tank Blog...

We're creating this blog to give our 2009 Think Tank attendees a place to talk to each other and share ideas/questions in advance of our May meeting.

We have a pretty amazing group of folks coming to the Think Tank - designed to wrestle with the questions "How can we radically transform activities in long term care?" I think you'll enjoy meeting each other a bit (virtually) before we gather.

For those of you have have responded to questions before I started up this blog, I'll add your answers here.

I'm leaving the blog open, so folks who aren't coming can