These are only a few of the many books and videos for your further exploration, but they are my favorites. I will periodically add new ones that excite me.
ADI (Alzheimer’s Disease International), World Alzheimer’s Report 2009, World Alzheimer’s Report 2010 and World Alzheimer's Report 2011 London: ADI, 2009 and 2010. Download at www.alz.co.uk/research/world-report
Basting, Anne, Forget Memory. Baltimore: Johns Hopkins University Press, 2009.
Borrie, Cathie, The Long Hello — the Other Side of Alzheimer’s. Vancouver: Nightwing Press, 2010.
Bryden, Christine, Dancing with Dementia. London: Jessica Kingsley Publishers, 2005.
Calkins, Margaret, et al., Creating Successful Dementia Care Settings. (4 volume set) Baltimore: Health Professions , 2011,
Camp, Cameron, Montessori Based Activities for Persons with Dementia. Baltimore: Health Professions Press, 2001.
Cayton, Harry, Nori Graham, and James Warner, Dementia: Alzheimer’s and other dementias : the ‘at your fingertips’ guide. London: Class publishing, 2004.
Coste, Joanne Koenig, Learning to Speak Alzheimer’s. Boston: Houghton Mifflin, 2003.
Doraiswamy, P. Murali, Lisa Gwyther, and Tina Adler, The Alzheimer’s Action Plan: The Experts’ Guide to the Best Diagnosis and Treatment for Memory Problems. New York: St. Martin’s Press, 2008
Fox, Judith, “I Still Do”. New York: Powerhouse Books, 2009
Genova, Lisa, Still Alice. Bloomington, IN: iUniverse Inc., 2007.
Greenblat, Cathy, Alive with Alzheimer’s. Chicago: University of Chicago Press, 2004.
Guisset-Martinez, with Marion VIllez, Regaining Identity: New Synergies for a Different Approach to Alzheimer’s: Guidelines for Professional Practices. Paris: Fondation Médéric Alzheimer, 2011.
Kitwood, Tom, Dementia Reconsidered: The Person Comes First. Buckingham, UK and Philadelphia: Open University Press, 1997.
Kuhn, Daniel, Alzheimer’s Early Stages: First Steps for Families, Friends and Caregivers. Alameda, California: Hunter House, 2nd edition 2003; Kindle edition, 2011.
Mace, Nancy and Peter Rabins, The 36 Hour Day. Baltimore: Johns Hopkins Press, 5th edition 2011
Murray Alzheimer Research and Education (MAREP) By Us, For Us guides (8). Free download at or purchase from MAREP, www.marep.uwaterloo.ca/products/bufu.html
Power, Allen, Dementia Beyond Drugs: Changing the Culture of Care. Baltimore: Health Professions Press, 2010.
Rosenberg, Francesca, Amir Parsa, Laurel Humble and Carrie McGee., Meet Me: Making Art Accessible to People with Dementia. Museum of Modern Art, 2009.
Shouse, Deborah. Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. Kansas City, Missouri: The Creation Connection Press, 2006.
Shriver, Maria The Shriver Report: A Woman’s Nation Takes on Alzheimer’s. New York: Simon and Schuster, 2011.
Shriver, Maria What’s Happening to Grandpa? Boston: Little Brown, 2004.
Small, Neil, Katherine Froggatt, and Murna Downs, Living and Dying with Dementia: Dialogues about Palliative Care. New York: Oxford University Press, 2007
Snyder, Lisa, Living Your Best with Early-Stage Alzheimer’s: An Essential Guide. Northbranch, Minn: Sunrise River Press, 2010.
Taylor, Richard, Alzheimer’s from the Inside Out. Baltimore: Health Professions Press, 2007.
Whitehouse, Peter and Daniel George, The Myth of Alzheimer’s. Boston: Little Brown, 2008.
Zeisel, John, I’m Still Here. New York: Penguin Group, 2009.
SEE MORE... BEST DVDs
Harrington, Eamon and John Watkin, Grandpa, Do You Know Who I Am? The video can be seen online at http://www.hbo.com/alzheimers/grandpa-do-you-know-who-i-am.html
Huebner, Berna and Eric Ellena, I Remember Better When I Paint… Order from www.irememberbetterwhenipaint.com/ (available in English and in French)
Kashi, Ed and Julie Winokur, The Sandwich Generation. Order from http://mediastorm.com/store/dvd-page/the-sandwich-generation
Lichtenstein, Brad, Almost Home. Order from www.almosthomedoc.org
Taylor, Richard, Be with me TODAY. Order from www.richardtaylorphd.com
MY FAVORITE LINKS
PLEASE SEE MY BLOG FOR MY FAVORITE LINKS
BUT THE MOST IMPORTANT ARE THE TWO VIDEOS ABOUT MY WORK:
CORINNE MAUNDER'S FILM, LOVE, LOSS, AND LAUGHTER: LIVING WITH DEMENTIA, Released Sept 21, 2013. PLEASE SHARE THIS WIDELY!
Paul Kerley created a wonderful 5 minute video that had more than 2200 hits inthe first month it was up. Several people I know and many I don't know have already told me that they are using it in their classes and conference presentations. Please feel free to do the same and tell me about it!
Alzheimer's Australia has created a web site for the traveling exhibit of Love, Loss, and Laughter:
“I hope that the person who comes into my show and the person who comes out are not quite the same is different.” Sebastaio Salgado, photographer
The purpose of the exhibit is to foster reflection and discussion. On this page, you can view the themes of the exhibit, see some sample images, and listen to recordings of a variety of experts as they respond to the images. I hope it will encourage you to visit the exhibit itself when it is near where you live or are visiting.
The idea and execution of the commentaries on the WAV files came from JD Talasek who prepared them for the first exhibit of LOVE, LOSS AND LAUGHTER at the National Academies of Science, March - August 2010. I am grateful to him for this and other contributions.
Love, Loss, and Laughter: Seeing Alzheimer’s Differently
The photographs in this exhibition offer a challenge to much of the visual and mental imagery of Alzheimer’s disease and related disorders. They show that while the losses created by these degenerative brain disease are real, people with Alzheimer’s are not “empty shells” as they are often stereotypically depicted, completely lost to us and to themselves. The photographs show what quality health care looks like, illustrating that such care allows people with Alzheimer’s disease to sustain connections to others and to their own past lives at a far higher level than is generally believed to be possible. We see that they are capable of experiencing joy as well as sorrow, that loving care can yield loving responses. The seeming incapacities of those afflicted with Alzheimer’s are diminished by those who learn to build bridges to them.
It is commonly known that there is great sadness associated with a diagnosis of Alzheimer’s and related disorders. What is less often recognized is the great love which many people with these challenges receive and give. And what is often not recognized at all is that there can still be hearty laughter. The photographer hopes that these images will help viewers seek ways to make loving care and laughter more frequent, and that they will help to reduce the fear and stigma that surround dementia.
About the artist
Dr. Cathy Greenblat has been engaged in a cross-cultural photographic project on aging, dementia, and end of life care since 2002. She is Professor Emerita of Sociology at Rutgers University (New Brunswick, NJ), an Artist in Residence at the hospital network of Nice, France, and a Visiting Research Fellow at the International Observatory on End of Life Care, Lancaster University, UK. Dr. Greenblat is the author of more than 100 professional articles and 14 books, including Alive with Alzheimer’s, and the German translation, Alzheimer und Lebensqualitat. She was awarded the John P. McGovern Annual Award for work on Family, Health and Human Values by the University of Houston in 2007 and she delivered the US Institute of Medicine 2010 Richard and Hinda Rosenthal Lecture.
Her photographic work and lecture circuit includes the United States, Mexico, Western Europe, Russia, Africa, China, Japan and India. Love, Loss, and Laughter, will be published in March 2012.
Alzheimer’s Disease International (ADI) is a partner in the exhibit and book, helping to bring them to a global audience. This exhibit has received the generous support of Nutricia — Advanced Medical Nutrition.
THEMES AND EXAMPLES
If you’ve known one person with Alzheimer’s disease… you’ve known one person with Alzheimer’s disease. A set of portraits introduces you to several people living with Alzheimer’s. They show that women and men, rich and poor, people working in various professions, as well as those who work at home, suffer from these cognitive difficulties. While most of them are more than 60 years old, early onset Alzheimer’s can affect men and women in their 40’s and 50’s. Knowing more than one person is important, because there is such variety in background and experience, and we risk generalizing far too broadly from the one or two persons we know or know about. A richer understanding comes from an appreciation of the complexity, and a richer understanding can help us to respond more appropriately, as individuals and as members of our communities.
Elsa • Dominican Republic
Elsa and one of her 10 siblings were diagnosed with Alzheimer’s. Elsa left school after 4th grade and stayed home helping her mother, not dating and never marrying. The other sister was outgoing, a professional, married with several children. Elsa is featured on the Alzheimer’s Disease International’s 2011 World Alzheimer’s Day poster!
Everyone knows about losses that come from Alzheimer’s and related disorders; many people know about the power of love and loving care; few people realize that despite the losses, joy and laughter can continue. Playfulness and laughter can emerge from a variety of sources including interactions built on smiles and humor, parties, and LaughterYoga. Other sections of the exhibit show the kind of care giving that makes these celebratory moods possible and frequent. It is important to remember that moments of quiet contemplation are also ways of celebrating life.
Marie-Thérèse at the Alzheimer’s Cote d’Azur Christmas party • France
Marie-Thérèse is very sensitive and emotional and sometimes alternates between tears and laughter in a short time span. Her laughter is more frequent, however, reflecting her very positive outlook. “It’s what my mother taught me”, she explained and she maintained that attitude during her career as a midwife.
Elsie and Jody hugging after a LaughterYoga session • USA
Playfulness and laughter emerge from a variety of sources: parties, joking, celebrations of birthdays and holidays, joyful interactions, and Laughter Yoga. Jody Ross, a LaughterYoga teacher in Minneapolis, lead a session with residents, staff, and a few visitors at Lakeview Ranch. Elsie agreed to participate, but at first she had only grimaces to indicate that she knew she would NOT have a good time. She soon changed into an active and enthusiastic participant.
A family member — a spouse, an adult child, a sibling — becomes the primary caregiver for most people who develop Alzheimer’s. As the illness advances, caregiving becomes increasingly difficult. Assuring safety, meeting basic needs for food and hygiene, creating situations for social interaction, and providing stimulation and affection are difficult without assistance from others. When a need to deal with aggres sive behavior is added, caregivers often are strained beyond their abilities, When trained home care aides and high quality day programs can be found, there is some respite for family members and the person with dementia can benefit as well from more connections and stimulation. Without such assistance, caregiver fatigue and poor health are common. Burnout and depression can also occur. Building partnerships between patients, family caregivers and professionals should be considered a priority, not a last resort.
Len and Bette • USA
Len and Bette have been married for 63 years. He cared for her at home in the first years of her cognitive difficulties, until wandering and other problems led both the doctor and their children to urge an institutional placement. Len is consumed by her losses and his losses. He told me, “I’ve left everything in the house the way it used to be as if she might come home. But in the long run I know it’s not true. I’ve lost her. She’s here, but I’ve lost her. I’d give you my bronze star if you could bring her back.”
Helen Jr. and Helen Sr. • USA
Helen Sr. has been experiencing moderate dementia for the past ten years. She was a prolific artist and sold many paintings, even through the early stages of her dementia, until she lost her eyesight. For the past three years Helen Sr. has been living at a small, private, residential group home for people with dementia near Washington, D.C. Her daughter, Helen Jr., and other family members live in the area and visit regularly. They feel that everyone at Victoria Home, from residents to family members and caregivers, is ‘family’.
CONFIDENCE, CONNECTIONS, AND CAPACITY BUILDING
Meaningful ways exist to bridge the gaps that so frequently develop between those with Alzheimer’s and related disorders, and their family and friends. Often the person needs help in maintaining or regaining confidence, as well as assistance in overcoming the fear of making mistakes. Validating an individual's personhood by identifying and showing respect for his or her unique interests and accomplishments is essential. Changing the perspective and improving the skills of the care partners is a key component.
People with dementia live very much in the present. Memory clinics, day care programs, and residential programs sometimes focus on reminiscence, honoring their past lives and accomplishments. They also need to offer participants meaningful experiences, which are vital to a sense of well-being, and that make them feel valued and useful. Unfortunately, television watching and bingo are too often substituted for stimulating and pleasurable activities, due to insufficient knowledge of the person's past interests and to underestimations of his or her capacities. Family members must share such information with caregivers in the home or outside settings who can build on them.
Former math teacher at the blackboard • India
The staff at the Day Care Center in Cochin understand the need to find individualized activities that are meaningful to the participants given both their backgrounds and their present capabilities. This woman, a former mathematics teacher, likes to write numbers on paper or on the blackboard. The Center purchased the blackboard to help her feel connected to her past, experiencing old pleasures.
Kay reading at Lakeview Ranch • USA
Kay, a resident at Lakeview Ranch in rural Minnesota, became intensely interested in a book that Laura Bramly had originally created for her mother when she experienced significant loss of her memory and cognitive abilities. Laura found that her mother could be interested and engaged with a colorful, easy to read book. She then produced the Life Scenes volumes for others. At the ranch she told me “Watching Kay, a one-time teacher, sit and read the Life Scenes book, brought tears to my eyes. My mother’s legacy was being passed on and her book was bringing life, joy and learning to yet another person with dementia.”
As Alzheimer’s disease progresses, verbal expression often becomes more difficult. The right words may not be easily accessible for the person with cognitive challenges, who experiences frustration at the difficulties of making a clear statement. Caregivers often become frustrated and impatient, compounding the difficulties. People who have spoken a second language for many years may forget it, reverting to their native language which others in their social circle may not know. Even where the words themselves are clear, the thoughts behind them may be confused or unrelated to the present situation.
The temptation to try to drag the person into “our reality” is great, but doing that is likely to worsen the problem. Many problematic behaviors by people with dementia are the result of their seeking some kind of lost connections and of their not being able to communicate what they are feeling and wanting. It is important to know that effective communication approaches can be learned and practiced successfully by family, friends, and professionals.
Renu and Mrs. Kumar • India
As a volunteer with the Delhi chapter of the Alzheimer’s and Related Disorders Society of India (ARDSI), Renu has been trained to build communication bridges to people who don’t speak. Mrs. Kumar, Renu’s older first cousin, no longer recognizes her son or other family members. When they meet, Renu comes very close, touches her cousin’s hand or arm, maintains strong eye contact, and smiles while speaking about things in their shared past. “Usually after about 15 minutes, something I say triggers her recognition of who I am, and with that recognition comes a strong emotional reaction. Then she speaks with me in an animated fashion for a few minutes, before slipping away, back into her isolation.”
MUSIC AND MEMORY
Because music is processed in many areas of the brain, people with Alzheimer’s disease are often able to engage meaningfully in live music even when they have severe cognitive impairment. An activities director friend described participation in music programs as “Holding hands without touching.” Another friend, Daniel Kuhn, noted: “Music and song unlock lyrics, melodies, movement, dance, and every emotion, especially joy. If you do not sing, you are not communicating in a way that touches the soul. A good voice is not required.” While musical entertainment and group singing can be very enjoyable, there are multiple gains when a skilled music therapist is at work. Many of them nowadays organize drum circles as part of their effort. Patients, family, staff, old, young, musically inclined and musically inexperienced —all can participate easily. The drum circle provides an opportunity to release pent up emotions, express oneself without words, and to have a good time. It also creates a powerful bonding experience.
Esther and Ana-Lyn in a drum circle • Canada
These two women had a wonderful time from the first minute of the drum circle, laughing and moving tambourines and small shakers as the rhythms set by the leader changed. Every time I looked at them I had to smile.
ART AND IMAGINATION
Artistic expression through drawing, painting, poetry, drama, and imaginative story-telling reveal possibilities, often not sufficiently exploited, for concentration, communication and using imagination. Successful art therapy programs have been reported with those at the beginning of the disease and those at the most advanced stages. People with prior experience in artistic endeavors as well as those who have not previously engaged in them can profit from and enjoy the activities. Some programs have invited professional artists to work with day care or residential program patients, leading them in procedures, and guiding them into several hours of intense focus and creativity. Museum visit programs for people with dementia are being developed around the world. In the best ones, participants are encouraged to discuss and interpret the artwork, not just to look and listen. Such programs open resources to people who are otherwise cut off from much of the cultural life of their communities.
Christiane is proud of her sketch • France
In Nice, the City Council opened seven museums to visits by Alzheimer’s patients and their caregivers in a collaborative project with the Center for Memory Research and Resources (CMRR). The pilot program developed by Valerie Lafont in 2010 was such a success that the Council decided to expand it to other cultural events. At the last step of a group visit to the Matisse Museum in Nice, participants were given sketching materials and invited to reproduce the artist’s technique. Christiane was very proud of her results, with good reason.
ANIMALS AND CHILDREN
Animals create a sense of emotional safety for many people. They may also open channels of non-threatening communication between a person with dementia and family members, care professionals, and other participants in a day or residential program. Whether the animal is a personal pet, a pet therapy visitor, or another “resident” of a community, its presence can create a brighter atmosphere. Similarly, when children are around they often provide a stronger sense of connection to “real life”. Many of them can engage in playful, open comunication more easily than adults can.
Lucille with two therapy dogs • USA
Tammy and Gigi, two pet therapy dogs, have brought delight to many people with Alzheimer’s as well as to many hospice residents. The most enthusiastic response I saw, however, was from Lucille the first time the animals were brought to the hospice where she was living. Astounded at seeing Tammy enter her room, she loudly exclaimed "It's a DOG!!!" Lucille had many joyous visits from the Silverado SilverPaws program until the week she died.
CONSOLATION AND COMFORT
All of us occasionally experience fear, sadness and confusion. People living with dementia experience these emotions more frequently and need support to combat such feelings. Smiles, touch, and hugs offer powerful non-verbal messages of consolation and comfort. This emotional work is an essential element of quality care at home; it is also a major part of the daily work of professionals and volunteers who make home visits, work in day programs for adults with cognitive challenges, or work in residential communities for people with dementia. The person in distress who receives such attention sometimes offers similar help to others.
Hippocrates’ dictum “The art of medicine is founded on observation: to cure sometimes, to relieve often, to comfort always” is the basis of person-centered care that continues through the end of life. Practices that maintain dignity through small attentions to and respectful treatment of patients, and family members are effective and well appreciated. There is never “nothing to do” in terms of providing comfort.
Home visit to the woman in the turquoise room • India
Providing home based care to people with dementia is an integral part of the comprehensive care program by ARDSI’s Cochin chapter. After initial screening, those suspected to have dementia are seen by a psychiatrist and social worker to confirm the diagnosis. Then a plan for providing home based care is created, based on the needs of each individual family. ARDSI provides this service to the poor and to people in middle class families; it is being expanded to cover people from all social and economic classes, with the support of the government.