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!

Tuesday, April 10, 2012

What People with Dementia Need

Several years ago, Pat told me that his fundamental philosophy regarding human nature is that we all need "to have something to do and someone to love." I think of that often now, because one of the great burdens of dementia for the person who has it is that they can't do what they once could. And as time goes by, they can't do much at all. I'm sure that a lot of the emotional and behavioral problems that doctors identify as part of brain degeneration are also due to this central frustration.

There is a belief about old people in our success-driven culture that fundamentally relegates them to the waste pile of non-productivity. Our notion of retirement is central to this belief--the idea that the old no longer seek to work, that they want to spend their days playing and resting, essentially doing nothing. I've met very few people over 65 who feel this way. Most women and men want to contribute to the world around them as long as they can. They just want to have control over their productivity for a change, to be able to choose with whom they interact and to focus on creativity and happiness rather than working to meet someone else's goals.

American society discounts the value of the work done by the elderly. The caregiving, the sharing of spiritual wisdom and life experience, the actual professional work that many pursue well into their nineties. Our stereotype is that old people are not worth much. I am fairly certain this belief is at the heart of the medical neglect of Alzheimer's disease. In the eight years since Pat began showing symptoms of the disease, there have been NO new medications released to treat dementia. Not one. Clinical trials are all over the map; there is no concerted effort, as there was with heart disease in the 1980s, AIDS in the '90s or breast cancer since 2000 to find a cure or protocols for symptom management.

Why? Because doctors, politicians, the media and the general public believe that dementia is a disease that afflicts people who are already non-productive. So, in essence, who cares? Grandma's getting old, she forgets things, she can't feed herself. Well, that's just how it goes, right?

Not right. Brain disease is no different from any other organ disease. It has a cause (or causes). It has a genesis and process. Some populations are more vulnerable, but that doesn't mean that they are the only ones afflicted or that they are less valuable and therefore less worthy of a concerted public health effort to find effective treatments.

Alzheimer's Disease is the only major killer of adults to have no effective medical treatments that prolong life and well being. Funding for research has been a joke, with researchers having to appeal through the Alzheimer's Association for individual donations to aid their work. Only recently, with the introduction of the National Alzheimer's Plan consequent to legislation in the 2010 Congress, has funding for research toward effective medical interventions been part of a proposed national budget. And yet, the cost of Alzheimer's and other dementias in terms of lost wages (of people with the disease and of their caregivers), lost tax payments, unpaid caregiving and burdens on the Medicare and Medicaid systems now stands at $210 billion annually. Yes, that's BILLION.

A quarter of a million Americans suffer from early-onset dementias of the kind which overturned Pat's life when he was in his mid-fifties. The vast majority of these people, both men and women, are in the workforce when they become symptomatic. They are parents of children in high school. They volunteer in civic organizations, they pay taxes, they own houses with mortgages. And then, in the space of a few years, they are unable to work, keep up their property, manage their money, guide their children.

Some of these dementias move at a horrifyingly fast clip--Pick's disease, for example, can take away all reasoning and speech in less than two years and kill in less than three. It typically targets people in their late forties to early sixties. As the Baby Boomers and Gen Xers age, I believe the incidence of early onset dementia will increase. Once thought to be primarily genetic, this set of diseases is now known to be much more complex. Smoking, alcohol and high exposure to heavy metals and other pollutants all may be contributing to higher numbers of mid-life adults developing memory problems that can lead to full-blown dementia.

These are a few of the facts that underlie what is not only a disease process but a profound social, financial and spiritual challenge for people who develop it, those who love them, the medical profession and public.  health policy makers. In my next blog, I will take a look at current practices in dementia caregiving and new directions that I believe must be pursued with urgency.