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Archive for October, 2007

Alzheimer’s Advocacy

Posted in cultural phenom, public education, Uncategorized, tagged , , , , , , , , , , on October 29, 2007 | 2 Comments »

Thanks to Maureen Matthews for letting me know about the recent conference in L.A. by and for people new to their Alz. diagnosis. The LA Times article tells of two men with early on-set and in early stages, Richard Bozanich and Jay Smith, who met at an early stage support group and dreamed of holding a conference that would energize, organize, and activate people who were in the same boat.

They are part of a larger, growing group of people diagnosed with Alz (or “probable-Alz” or with Alz-like symptoms) who are speaking out. DASNI, Alzheimer’s Spoken Here, Dementia USA. The New York City Chapter of the Alz. Assoc. has an annual conference (May 2nd this year) for people in early stages and conferences and support groups have been emerging across the country in the last several years.

All these groups aim to improve the quality of life of people with dementia. The DASNI site includes a plea and an outline from Christine Bryden for the group to focus their advocacy efforts to make Dementia a global health priority. My yearning is to find a way to link existing movements together – we are not just one disease or another…

We are just at the beginning of a new way to see and understand Alz and dementia…

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Anti-Stigma Campaigns

Posted in cultural phenom, public education, tagged , , , , , , on October 26, 2007 | 1 Comment »

This foggy Friday morning has found me on a Google adventure, looking up the far reaching anti-stigma efforts against mental illness in this country. For just a taste of the breadth of these actions, check out this link to the Anti-Stigma Campaigns of the Substance Abuse and Mental Health Services Association. I’m also re-reading all my disability rights movement history books – trying to find the points of divergence. Why isn’t dementia included in this mammoth anti-stigma effort? It’s mentioned very rarely. What are the historical reasons why these movements separated? And remain separated? The effort in England Changing Minds, includes dementia. But not in the States. Why? The mental illness movement does seem to use a heavy language of recovery…which is not possible in Alzheimer’s. Is it because there are no survivor stories?

As TimeSlips embarks on a national anti-stigma effort, we’re looking to partner to bridge this divide.

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Serendipity on a plane

Posted in cultural phenom, tagged , , , on October 23, 2007 |

I was on my way to Omaha to give a talk this past weekend. Who knew that the flight from Chicago to Omaha on a Saturday night would be mobbed? Every seat was full – three across on each side, some 30 rows deep. When I settled into my seat, I asked the older woman with the straw hat next to me if she was from Omaha – and we found our way to some uncanny coincidences. She was writing a book for caregivers for people with Alzheimer’s. She’d just been to Florida–a gathering of sisters to support one through a hard time. The oldest, a smart, vibrant woman, is beginning to lose her memory. The youngest is impatient with her older sister’s lapses. The oldest is angry at the younger’s impatience. My seat-mate was the peacemaker it seemed, with a challenging task ahead of her. “You’re not going to believe this,” I said, “but I’m writing a book called Forget Memory.” I talked about how stigma and fear block us from embracing each other through the process of loss so common at the end of life. All my work and research seemed so right in light of her story. But could attitudinal change really help her? I can see the strong allure of pill research – not just the money to be made, but the ease of the fix. Take a pill – make it better. Social change is HARD.

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social memory – close up

Posted in Uncategorized, tagged , , , , on October 15, 2007 | 1 Comment »

I went to my 20th college reunion over the weekend. Colorado College was smaller than my high school. I spent 4 lovely years there with bright, idealistic, warm, outdoorsy fellow youngsters. Still, I barely remember my time in the shadow of Pikes Peak. This weekend, seeing the faces of 20 years ago, with a little less hair and a few more expressive lines radiating from eyes and mouths– names and places jumped to the tip of my tongue. “Remember that night when?…” Yes – I did. Suddenly. Remarkably.

And then there were the holes. “Hi Anne,” said someone with total confidence in our knowing each other. The face gave me nothing. I looked at the nametag. Nothing. We had a great conversation. And I’m happy to know him now – but I swear I’ve never met him before.

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Lonesome No More

Posted in books, cultural phenom, public education, tagged , , , , , , , , , , on October 11, 2007 |

Fresh back from giving a talk at a conference up in Appleton – the 3rd Annual Palliative Care Conference, put on by Theda Care and the Alzheimer’s Association Greater Wisconsin Chapter. The whole day’s agenda revolved around creativity, spirituality, and dementia. There were family members, people with dementia, and professional care staff – an invigorating blend. Abhilash Desai, the MD who runs the ThedaCare Behavioral health’s Alzheimer’s Center on Excellence is a pretty unusual soul – encouraging and coaching his patients through some of the hardest moments of their lives – diagnosis, adjusting to loss, and when the time comes, letting go.

I was inspired by a great deal in Dr. Desai’s talk, and in a talk by my friend and colleague Susan McFadden, who began her talk about “social death” and stigma in dementia with a quote from William James:

“If no one turned round when we entered, answered when we spoke, or minded what we did, but if every person we
met ‘cut us dead,’ and acted as if we were non-existing things, a kind of rage and impotent despair would ere long well
up in us, from which the cruelest bodily tortures would be a relief; for these would make us feel that, however bad
might be our plight, we had not sunk to such a depth as to be unworthy of attention at all.” (from the Principles of
Psychology, 1890)

McFadden connected social death to studies of how loneliness makes us sick (Hawkey and Cacioppo, 2007, “Aging and loneliness: Downhill quickly? Current Directions in Psychological Science, 16. 187-191)

And suddenly, I was in my mom’s running store, The Aid Station, where I worked in high school. The running movement was just starting in 1982, so work tended to be a little slow. A friend had given me a book to pass the time – by someone named Kurt Vonnegut. The book was called Slapstick, or Lonesome No More. In it, Wilbur Daffodil-11 Swain runs for President and wins on the slogan, Lonesome No More. His theory was that modern times had torn up the fabric of community and we needed to reknit it to survive. I was a bit of a lonely kid – and in Vonnegut’s playful voice, I had found my home. I read it in an afternoon. And after work, went down to the Janesville Public Library and checked out every Vonnegut book they had.

sorry for the digression…memory is funny.

200px-slapstickvonnegut.jpg

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Alzheimer’s in first person

Posted in books, cultural phenom, tagged , , , , on October 9, 2007 |

There are quite a few stories of Alzheimer’s told in first person now. The latest addition to the genre is Richard Taylor’s Alzheimer’s: from the Inside Out (2006). All the autobiographies have something in common – they are all written from the perspective of someone with early-onset (under 65). This means the stories and lives tend to feel ripped unfairly from lives thick with work, children, and community when diseases associated with aging are still thought to be uncommon. This means, of course, that we still don’t tend to hear the voices of people in their 80s – whose situations are unique.

Richard Taylor’s book stands apart from the field in some important ways. His is the voice of activism. Almost all the authors say they want their book to be useful to people – particularly for those going through the experience. But Taylor aims to do more. He wants to change systems. He wants to influence where research dollars go; attitudes toward dementia; and diagnostic procedures. I think he’s going to be the one – and others who follow him – to bring the dementia field to the civil rights approach that the disability rights movement has championed. Taylor is a voice that insists “nothing about us without us!” the disability rights slogan. This is a new voice in dementia autobiographies — and one that can drive us into a new paradigm of how we see, understand, and care for people with it.

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I sort of want to go gently…

Posted in art, cultural phenom, film, tagged , , , , , , , on October 4, 2007 | 2 Comments »

There are a bunch of new documentaries out (or coming out) about aging and creativity. There’s Do Not Go Gently by Melissa Godoy. There’s Still Kicking by Greg Young. Both these films profile life-long artists and people new to creative expression. Artists never really did fit into the 9-5 crowd, so it makes sense that they are able to dodge the dilemma of retirement: how to stay meaningfully engaged in life when the working world kicks you to the curb? What can we do when the identity we invested so many years in building springs a serious leak? These artists are clearly role models. And those who never quite had the courage (or luxury) to pursue the arts during their careers, have a special brand of courage to conquer self- and cultural doubts and become an artist.

There’s also Young@Heart by Stephen Walker. Young@Heart tells the story of the choral group with covers of kid music. These folks cover the Clash, OutKast, and Cold Play – and do it with an in your face quality one has come to expect only of 20-somethings. Many of these guys weren’t singers or artists – and now they’ve found a incredible outlet for their energy and a powerful way to build community.

With three of these coming out in 2007/08 (Fox Searchlight acquired Young@Heart from Channel 4 and will bring it out in 08) there seems to be a light bulb going off somewhere…perhaps many places at once. Creativity and creative expression are ways to fan and direct the life force – for healthy older adults and for those with some serious disabilities.

These films are clearly inspirational. Yet I’m a little hesitant about their language and framing of the issues. It sounds rather like I have to claw my way out of this world. I was sort of hoping that I might gain enough perspective that I could go out fairly tranquilly. The “Young@Heart” thing seems a little cute – why can’t I be old at heart? And must I kick?

Still Kickingyoung at heart chorus

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social marketing

Posted in cultural phenom, public education, tagged , , , , on October 1, 2007 |

I’ve fallen and I can’t get up. I tripped over social marketing in public health, and now I can’t think of anything else. I’m watching a video lecture by Michael Rothschild, I bought the book Hands-On Social Marketing: A Step-by-Step Guide by Nedra Kline Weinreich, I am reading articles about how the “fear appeal” works and doesn’t work… It’s at the core of what I want to talk about in Forget Memory… “Social marketing works because it recognizes what people are actually looking for out of life. How to be popular, how to have fun. Public health marketing is hard because we’re telling people to stop doing all the things they love to do.” (Rothschild)  It puts the marketing of Alzheimer’s awareness into context of many other awareness campaigns – binge drinking, smoking, HIV/AIDS, folic acid, obesity, early detection of various cancers.  The hard part for Alzheimer’s and dementia is that the reward for early detection is…well…a bit nebulous.

don't eat that...it's bad for you...

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