What exactly would happenif we reduced stigma and fear? After talking with hundreds of people who work in the field of dementia care, I’ve come to believe that we’re afraid to reduce the fear of dementia. We think that reducing fear will mean a sudden plunge in the amount of re- search dollars that come from private donors and the NIH alike. We think it would mean that the term “Alzheimer’s,” that strange-sounding German word that ill fits our tongues (Al-timer’s? old-timers?) will fade out of use just as the Alzheimer’s Association, which provides so many valuable services, struggles to get its name and services out to every Amer- ican household that needs them. We fear that people will stop blaming a “disease” and will blame the person with dementia for acting funny (“If he loved me, he wouldn’t forget these things”). Stigma and fear are evolutionary impulses, some theories would have us believe; they help us identify people not to marry, people that might be harmful to us. We think we needthe stigma and fear of dementia.
Perhaps if we can imagine the benefitsof reducing stigma and fear, it will give us courage to take the plunge. What might happen if we re- duced the fear and stigma of dementia?
More people might get diagnosed.
More people might plan ahead, with long-term care insurance; more people might have family discussions about what to do if they should experience dementia.
More people might learn about and use services that enable them to stay at home, if that is their choice.
More people might spend more time with more friends who live in nursing homes.
If more people spent time in nursing homes, there might be less tol- erance for poor-quality care and poor quality of life.
Less stigma and fear might reduce stress for people with dementia, which might improve cognition.
Friends and family might be more involved and supportive of care partners and people with dementia, reducing social isolation.
More social support might mean less stress for care partners, improv- ing their health.
Less stigma and fear might give us better attitudes about aging—and longer lives (we could win back our .years).
Conclusion
More people might go into the field of dementia care, which could lead to innovations in all areas, from housing to care services.
More options for care might mean less stress for working adults managing care for their parents.
Less stress for working adults might mean greater productivity in the workplace.
Cultural institutions might acknowledge people with cognitive dis- abilities as valued members of the community they serve.
People with dementia and their care partners might feel more com- fortable visiting cultural institutions that welcome them, again reducing stress and challenging and growing their cognitive skills.
Maybe we would take lifelong learning (not just computerized cog- nitive exercises) a little more seriously.
Maybe dementia advocates would find kinship with other groups advocating for lifelong cognitive and physical health and forge effective coalitions.
Maybe we would actually develop a long-term care policy in the United States.
Maybe we would have more people who have minutes of mean- ingful human interaction per day.
Maybe we would reduce “problem behaviors.”
Maybe we would learn something about the meaning of life from people living intensely in the present, a place those without cognitive disability rarely get to experience.
Maybe we would grow as human beings by expanding our capacity for compassion.
One of the quiet prides I have of my family is my father’s vocabu- lary. Thomas John Basting was the only child of Alice Koehn and Abe Basting. Abe and Alice lived in a little bungalow that Alice’s father built on the South Side of Milwaukee, where Alice’s family experienced and survived the Depression. Alice worked as an assistant to a lawyer and Abe sold shoes. My father vividly remembers the day his mother walked him to the bursar’s office at Marquette University and wrote a tuition check for $. He had no earthly idea where she came up with that money. A college education was Abe and Alice’s dream for their only child. It would give him keys to the world of the people they typed let- ters for and fitted for fancy shoes. But sometimes I think my father’s access to that other world came more from his masterful command of language than from his college education. Even now, when a little-used,
strange-sounding, and perfect word slips from my lips into conversa- tion, I know it came from him. If and when I face dementia and lose my facility with time and language, I will not only struggle to express myself to others (and myself), I will lose my father as well. And that scares me.
If dementia comes to me, there will be losses, and possibly other, sometimes frightening, symptoms related to dementia. But, I hope, if and when I start to show symptoms of dementia, there will also be a chance for me to have a meaningful life from beginning to end. I hope that it will be possible for the story of who I am to continue as some- thing more than a simple tragedy. That is the case for Roger and Rocille, who, in spite of their considerable fears, move through Roger’s dementia with the expectation that their friends and family will open themselves to learning about the condition and that their health professionals will treat them with dignity. Dementia hasn’t stopped them from being ac- tively engaged in their community or from exploring the world. They added Sicily to the map of their world travels in . In , they vis- ited the pyramids. Roger and Rocille don’t stop at fear. Roger and Rocille are so much more than dementia. Aren’t we all?
Conclusion
Roger and Rocille McConnell. Photo by www.jimherrington.com.
:If you had magic and could change one thing about Alzhei- mer’s (without curing it) what would it be?
:I would fix the fear. As a nurse and caregiver, I feel the most help- less when I’m caring for someone with Alzheimer’s disease and they are fearful and I’m not able to alleviate the fear. If I had a magic wand, I would remove the fear factor. Not just the fear of the early diagnosis of where they are headed, but when the disease advances, where am I?
Why am I here? To alleviate that fear would be huge.
Appendix A
Program Description and Contact Information
Alzheimer’s Association
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support, and research; it has a national office and regional chapters across the United States.
President and CEO: Harry Johns www.alz.org
National help line: --
ArtCare
ArtCare, run by Luther Manor Adult Day Services in Milwaukee began in
and offers annual artist residencies in music, dance, storytelling, and a variety of visual arts. Artists in residence teach the staffhow to continue the programs after their residencies are over. All residencies culminate in a public celebration of the work.
Director: Beth Meyer Arnold www.luthermanor.org Contact:--
Resources:
ArtCare manual (www.aging.uwm.edu) Artists for Alzheimer’s (ARTZ)
Based at Hearthstone Alzheimer’s Care and founded by John Zeisel in , ARTZ is a nonprofit, membership-based organization that trains artist volun- teers to work with people with dementia in facility-based care settings and that manages their volunteer activity. Hearthstone also offers consulting ser- vices on designing programs and facilities for people with dementia.
Directors: John Zeisel and Sean Caulfield www.thehearth.org/artistsforalzheimers.htm Contact:--or [email protected] Resources:
T-shirts for sale to support ARTZ
Arts for the Aging (AFTA)
Founded in by sculptor Lolo Sarnoff, AFTA has a faculty of artists who provide (for free) up to programs a year to partnering organizations based in the metropolitan Washington, D.C., area. AFTA offers trainings and is focused on underserved seniors.
Executive director: Janine Tursini Program director: Diana Cirone www.aftaarts.org
Contact:--or [email protected] Center for Elders and Youth in the Arts (CEYA)
CEYA provides specialized visual and performing arts programming, much done in collaboration with youth groups, tailored to the San Francisco Bay–area older adult population. Since , CEYA has served thousands of elders and hundreds of youth.
Artistic director: JeffChapline http://ceya.ioaging.org
Contact:--, ext. , or [email protected] DanceWorks
DanceWorks teaching artists work in adult day settings in Milwaukee offering dance workshops and intergenerational multiarts programs (IMAP).
Executive director: Deborah Farris www.danceworksmke.org
Contact:--
Duplex Planet
Unconventional interviews with older adults conducted by founder David Greenberger are transformed into various works of art.
www.duplexplanet.com
Contact: [email protected] Resources:
back issues of Duplex Planetjournals CDs
books
Elders Share the Arts (ESTA)
Founded by Susan Perlstein in , ESTA offers a range of programs, includ- ing the Legacy Works program, which uses visual arts to tell stories.
Executive director: Carolyn Zablotny Program director: Marsha Gildin www.elderssharethearts.org
Contact:--
Resources:
A Stage for Memory: A Guide to the Living History Theater Program of Elders Share the Arts
The Arts and Dementia Care: A Resource Guide
Legacy Works: Visual Art and Reminiscence for Older Adults Generating Community: Intergenerational Partnerships through the
Expressive Arts
Other books, manuals, and videos The Intergenerational School
The Intergenerational School is a nationally recognized, Cleveland-based K–
charter school whose mission is to foster an educational community of excel- lence that provides experiences and skills for lifelong learning and spirited cit- izenship for learners of all ages.
www.tisonline.org
Contact:--or [email protected] Kairos Dance Theatre
A Minneapolis-based intergenerational dance company, Kairos was founded by Maria Genné in and began its programs for people with memory loss in. It now offers training and runs dance programs at multiple sites every year.
Artistic director: Maria Genné www.kairosdance.org
Contact: [email protected] Liz Lerman Dance Exchange
Founded in by Liz Lerman, Dance Exchange has created more than
dance/theater works. It has held thousands of performances and sponsored many community exchanges. Its free, online toolbox shares valuable exercises designed to encourage group participation and creative expression.
Producing artistic director: Peter DiMuro www.danceexchange.org
Contact: [email protected] Memories in the Making
Memories in the Making, founded by Selly Jenny in , is a failure-free art program designed to encourage self-expression by people with dementia. The program originally focused on watercolor painting, but individual Alzheimer’s Association chapters have adapted/expanded Memories in the Making as it has spread across the country. See, for example, the Cincinnati chapter, the
Program Description and Contact Information
Greater Wisconsin chapter, the southeastern Wisconsin chapter, the heartland chapter, and the Denver chapter.
Managed by the Orange County chapter of the Alzheimer’s Association National trainer: La Doris “Sam” Heinly
www.alz.org/oc/in_my_community_.asp Contact:--(Orange County program) Resources:
Memories in the Making Training Manualand DVD
I’m Still Here, by Sam Heinly, featuring paintings of people with dementia Memory Bridge
Memory Bridge is a curriculum to teach middle and senior high school stu- dents about memory and identity through partnerships with people with de- mentia. The Memory Bridge curriculum is available for purchase, and comes with training and support. There Is a Bridgeis a documentary film produced by Memory Bridge founder Michael Verde in and distributed by Ameri- can Public Media.
President: Michael Verde www.memorybridge.org
Contact: Athena Rebapis, outreach coordinator, [email protected] Museum of Modern Art
Education and Access for Visitors with Disabilities and Special Needs The museum’s Meet Me at MoMA Program offers tours for people with de- mentia and their caregivers on a day when the museum is closed to the pub- lic. This program is free but requires registration.
www.moma.org/education/moma_access.html Contact:--or--(TTY) or [email protected]
Resources:
MoMA Alzheimer’s Project Guide for Museums National Center for Creative Aging (NCCA)
Founded in , NCCA is a membership organization “dedicated to foster- ing an understanding of the vital relationship between creative expression and healthy aging and to developing programs that build on this understanding.”
Executive director: Gay Hanna www.creativeaging.org
Contact:--or [email protected]
Resources:
arts and aging national resource directory NCCA newsletter
Creativity Matters: The Arts and Aging Tool Kit Neighbors Growing Together
Neighbors Growing Together is a program at Virginia Tech whose mission is
“to improve the lives of people across the lifespan through intergenerational collaboration involving teaching, research, and outreach.”
www.intergenerational.clahs.vt.edu/neighbors/index.html Contact:--or [email protected]
Next Stage Dance Theater (NSDT)
Based in Seattle and cofounded by Dominique Gabella and Bridget Thomp- son in , NSDT initiated its Unleashed Memories program for people with dementia in and now runs it at two to three sites per year.
Artistic director: Dominique Gabella www.nextstagedance.org
Contact:--, ext. , or [email protected] Songwriting Works
An internationally recognized creative organization founded in by Judith-Kate Friedman that promotes health through the power of song- writing and performance, Songwriting Works offers training and sponsors residencies in facilities across the country.
Director: Judith-Kate Friedman www.songwritingworks.org
Contact:--or [email protected] Resources:
CDs
An Especially Wonderful Affair prints of articles by Friedman training materials forthcoming
St. Ann Center for Intergenerational Care
St. Ann Center for Intergenerational Care is a Milwaukee-based intergenera- tional day-care center that strives to prevent premature institutionalization of elderly people and persons with disabilities. Photographer Wing Young Huie photographed extensively at St. Ann’s Good Shepherd House, an adult day program for people with dementia.
www.stanncenter.org
Contact:--(main office)
Program Description and Contact Information
StoryCorps
StoryCorps, founded by David Isay in , is a national oral history project whose mission is to honor and celebrate one another’s lives through listening.
The Memory Loss Initiative of StoryCorps began in .
Executive director: David Isay
Director of StoryCorps: Donna Galeno
Senior outreach coordinator, Memory Loss Initiative: Dina Zempsky www.storycorps.net
Contact:--(general questions); --(reservations) Resources:
Listening Is an Act of Love(a book that shares the history and stories of the StoryCorps project)
Talk Back Move Forward: 100 Years of Alzheimer’s Disease
Talk Back Move Forwardis an -minute video based on photographs of and interviews with people with dementia, medical researchers, and family and professional caregivers.
Producer and director: Anne Basting
Available for free download at www.aging.uwm.edu TimeSlips
A group storytelling process founded by Anne Basting that encourages people to imagine rather than remember. There are currently TimeSlipstraining bases across the country. TimeSlipsoffers consulting and training on using creative expression in person-centered dementia care.
Director: Anne Basting www.timeslips.org
Contact: [email protected] Resources:
TimeSlipstraining manual (pages) TimeSlipsDVD (minutes) images for storytelling sessions To Whom I May Concern
Founded by Maureen Matthews (PhD), To Whom I May Concernis a play and a process for weaving together a play from the words of people with dementia.
www.towhomimayconcern.org
Contact: [email protected]
United Community Center (UCC)
The Milwaukee-based UCC provides programs to the Hispanic community and residents in Near South Side of all ages in the areas of education, cultural arts, recreation, community development, and health and human services.
UCC helps people achieve their potential by focusing on cultural heritage as a means of strengthening personal development. Photographer Wing Young Huie worked extensively at UCC’s adult day center.
Adult day center coordinator: Nelva Olin www.unitedcc.org
Contact:--(main office);--, ext. (adult day center) Wing Young Huie
Wing Young Huie is a nationally recognized documentary photographer who began to photograph people with memory loss in as part of his resi- dency in applied art at the University of Wisconsin–Milwaukee’s Center on Age and Community.
www.wingyounghuie.com
Contact: [email protected]
Program Description and Contact Information
Appendix B
Recipes from Chapter 1
Gülgün Kayim’s Shepherd’s Pie
tablespoons canola oil
pound or so ground meat
medium onion, chopped
small carrot
‒41cup peas
stalk celery
–tablespoons Marmite (English brown goop)
bay leaf
–teaspoons oregano
‒41cup water or chicken or beef stock salt and pepper to taste
For the mashed topping:
cups water
–medium potatoes
‒41cup plus tablespoons milk (reserve tablespoons for topping)
–tablespoons butter salt and pepper to taste
Preheat oven to degrees. Fill large pot with water and put on to boil. Peel and chop potatoes; add to water when boiling. In a large pan, fry onion in oil until soft. Add ground meat and brown. Add carrots, celery, oregano, salt, pep- per, Marmite; stir and cook for minutes. Add liquid and bay leaf, and simmer forminutes. Add peas, cook for minutes, remove from heat, and pour filling into a -inch square Pyrex baking pan. Check potatoes for doneness; re- move and mash when ready, adding butter, milk, salt, and pepper. Spread evenly over the ground meat mixture, brush with a little milk, and put into cen- ter of oven. Bake for minutes, or until the mashed topping is brown. Serve hot from the oven with a green salad.
Thom Sobota’s Cheesecake
Crust:
stick butter
graham crackers
‒12cup sugar
Pulse melted butter, grahams, and sugar in a food processor until moist and crushed. Spoon into a springform pan and pat down.
Cake:
eggs
-ounce packages cream cheese, softened
‒12cup sugar
teaspoon vanilla
Blend until smooth and pour on top of the crust in the springform pan.
Bake at degrees for minutes. You should see the edges of the cake begin- ning to crack. Let cool for minutes.
Topping:
ounces sour cream (low fat is okay)
‒14cup sugar
tablespoon vanilla
Mix thoroughly and spread on top of cooled cheesecake. Bake at degrees forminutes.
Cool in refrigerator for at least hours before serving.
Recipes from Chapter
Appendix C
Images and Stories of Dementia
Novels
Bernlef, J. Trans. Adrienne Dixon. Out of Mind.London: Faber and Faber,
.
Block, Stefan Merrill. The Story of Forgetting.New York: Random House,
.
Franzen, Jonathan. The Corrections.New York: Farrar, Straus and Giroux,
.
Genova, Lisa. Still Alice.iUniverse, .
Ignatieff, Michael. Scar Tissue.New York: Farrar, Straus and Giroux, .
Plays
Carson, Jo. Daytrips. New York: Dramatist’s Play Service, .
Congdon, Constance. Tales of the Lost Formicans.New York: Broadway Play Publishing, .
Foote, Horton. The Last of the Thorntons.New York: Dramatist’s Play Service,
.
Lonergan, Kenneth. The Waverly Gallery.New York: Grove Press, .
Mighton, John. Half Life.Toronto: Playwrights Canada Press, .
Vradenburg, Trish. Surviving Grace.New York: Broadway Play Publishing,
.
Memoirs and Autobiographies
Bayley, John. Elegy for Iris.New York: St. Martin’s Press, .
Bryden, Christine. Dancing with Dementia: My Story of Living Positively with Dementia.London: Jessica Kingsley Publishers, .
Davidson, Ann. Alzheimer’s, a Love Story: One Year in My Husband’s Journey.
New York: Carol Publishing, .
———.A Curious Kind of Widow: Loving a Man with Advanced Alzheimer’s.
McKinleyville, CA: Daniel and Daniel, .