Monday, April 30, 2012

A Vision for Productive Living

I've been reading to my husband from a biography of Wallace Stegner, a writer we both enjoy. I also read articles on the environment and education to Pat, along with Wendall Berry's poetry and occasional inspirational pieces from the Bible and elswhere. We watch Masterpiece Theater, the News Hour, Bill Moyers and American Masters. We go to church and chat with our fellow congregants afterwards. We volunteer twice a week at the local Horse Shelter, grooming and socializing rescued horses. We walk up at the Audubon Center or along the Santa Fe River hike and bike path. We water the new turf our friend Albert laid in the back yard and talk about what will go in the gardens this year. We admire the outrageous cloud formations that blow up above the Jemez Mountains to the west in the windy spring afternoons.

Why do people think that individuals with dementia don't want to be full participants in life? Maybe some are not able, but I believe many are. Pat is one. The more he participates, the less he withdraws into that blank stare, the afternoon pacing, the hazy angry moods. Eight years of bad news have made me impatient. And this growing frustration with the Alzheimer's research and care establishment has energized me to look for alternatives to the despair that too many families drown in as they cope with the steady decline predicted and (surprise!) realized in the lives of their loved ones.

So I've elaborated a vision for what I'm calling the Center for Productive Living. It would not be a daycare center in any conventional sense of the term. Rather, it would be a place, a community, where individuals with Alzheimer's or other forms of dementia could come a few times a week and:
1. Do real work--building upkeep, gardening, animal care, writing, creating and crafting art to sell, etc.;
2. Learn new skills and brain health strategies;
3. Exercise their bodies and brains;
4. Stay current with the world by discussing the news over coffee or tea;
5. Soak up sunshine for mood improvement;
6. Grow a garden and sell and eat incredibly healthy organic foods;
7. Participate in the upkeep of the center's building;
8. Sing in a choral group;
9. Meet regularly with physical, occupational, speech and massage therapists
10. Attend lectures on the latest advancements in dementia and brain health research;
11. Meet with doctors on the cutting edge of treatment; and
12. Participate in clinical trials.

Most importantly, the CPL would be a community in which people with dementia and their family and friends would no longer feel outcast and alone, a place where they could actually thrive and contribute.

For the center's site, I'm envisioning a secure fenced property where participants, volunteers and staff would wear tags like workers do in high-security facilities. It would be on the outskirts of a mid-size city in a mild climate, away from high-traffic roadways on a few acres of open land. The building itself would be state-of-the-art green-built, with solar systems for electricity and warm water and passive systems for heating and cooling. It would be about the size of a large barn.

The interior space would include a big common room for doing art, dining, presenting lectures and choral performances and other larger group activities, a moderate sized commercial kitchen, a coffee shop with indoor and outdoor seating, where volunteers could read the paper aloud in the mornings and lead a discussion on the news, a quiet library with computers for those able to use them and couches for reading or resting, a massage and physical therapy room, a music and choral rehearsal room, an exam room for doctor's visits and a locker room where participants staff and volunteers could stash coats and materials for artworks or other work in progress and garden tools.

Outside, the center could include a large garden for growing vegetables year-round and smaller herb and flower gardens, oriented along a contained circular path that would enable participants to walk to and from the gardens and exercise without getting lost. There would be a smaller barn and enclosure for animal care therapy with gentle pets such as a couple of polite old horses and dogs that participants and volunteers could work with. Outdoor activity and exercise--stretching, yoga, tai chi, etc--would be an important part of the daily schedule of CPL

Staffing would include a small group of employees and a large corps of volunteers, who might be family caregivers who pool their time resources to help each other. For most of the activities, there might need to be a ratio of one volunteer for every two or three participants. The latter would be limited to 15 or so on any given day, which would mean a daily volunteer staff of around five people. The center would be open from 8 a.m. to 3 p.m., Monday through Friday, with special events on several Saturdays each year. Participants and their caregivers would be welcome to stay for the whole 5 hours, with lunch and snacks provided, or to drop in with a prior phone call to ensure that there are enough volunteers to go around. Volunteers, staff and participants would meet together regularly to discuss what is working and what needs to be added, developed or dropped from the regular round of work, exercise and activities.

Funding for the Center for Productive Living will have to involve public/private collaborations. I'm hopeful that the pending National Alzheimer's Plan will be funded by Congress soon, since the $55-$150 million that it would provide annually over the next few years could be a potent source for grant funding. Other federal programs on aging, NIH and other federal, state and local agencies could be grant sources as well.  There also are a number of private and corporate foundations, such as the California Endowment, Hoag Family Foundation, Howard Hughes Medical Institute and others, which might provide support, along with a bedrock group of generous regional and local donors. Because this is a new concept in Alzheimer's and dementia care, I believe that it will be of interest to research and clinical specialists in the field and could attract funds through collaborations with the Universities of California and other academic organizations that house brain research and dementia caregiving programs.

Society and even the medical establishment might say, Why bother? Well, here are a few reasons.
1. Social engagement lowers rates of depression, leads to dramatically better quality of life and shortens the period of time dementia patients will need to receive intensive caregiving.
2. As I mentioned in my last blog, one of the great problems of people with dementia that we largely ignore is the sense of uselessness. The CPL would enable individuals with early through late mid-stage dementia to do real work, to whatever degree they can, so that they don't feel so helpless and non-productive.
3. Outdoor activity raises people's levels of vitamin D, one of the key nutrients for brain health;
4. Growing plants and caring for animals are proven therapeutic strategies that improve mood, focus and sense of purpose.
4. Eating healthy organic foods helps to maintain robust physical health, including brain health.
5. Learning new tasks actually enhances brain plasticity and creates new brain cells.
6. Having an otherwise healthy community of dementia patients can provide researchers with a potential pool of clinical trial participants and a group to study in their own right to determine the impact of the interventions and therapies listed above.

If any readers of this blog have ideas to share regarding this vision for the Center for Productive Living, please contact me through this blog or my Facebook page. Let's start a conversation and see how quickly we can turn it into a real place with actual services. Thanks!

1 comment:

  1. Connie - I'm sorry I hadn't read this until now, but WOW! What a great vision! You've just got to make this happen... one idea I have for doing a bit of research would be to go talk to the folks at the Academy for the Love of Learning about their LEEDS Certified campus. So much of what you described is what was done at the Academy. If you want to do that, let me know, and I'll be glad to connect you somehow.

    Meanwhile, how can I help you with your vision? No matter what, you have my support!!


I welcome comments on the content of this blog, especially stories from other husbands, wives and sweethearts caring for spouses/partners with dementia. It's a hard road and we need to walk with each other along the way. Thanks!