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. But Elsa is featured on the Alzheimer’s Disease International’s 2011 World Alzheimer’s Day poster!
Hugs and touching are not part of acceptable conduct in public contexts in Japan, but my photographs in Kyoto and Nagoya group homes show considerable physical contact between caregivers and residents. Dr. Yoshio Miyake explained: “In Japan, training courses for professional caregivers of people with dementia take place in many different settings, and non-verbal communication with them including touch or physical contact is emphasized.”
Daphne and her grandparents, Lara and Jerry, visited Lara’s mother at a Thanksgiving celebration at the Silverado community in Cypresswood, Texas. Daphne was saddened by Marjie’s loss of verbal communication skills. Lara encouraged Daphne to tell Marjie about the piano recital she would give the next day. After Daphne finished, Marjie signaled with some sounds that she had heard and understood her great-granddaughter’s story.
For a reminiscence therapy session in Nice, participants were urged to bring a photo or other item of importance to them. Many of the photographs depicted weddings or trips, but Liliane was delighted to show and discuss the photo of her grandson. Jean, a former baker who had played the harmonica all his life, entertained the others with some melodies.
Laughter and good moments are important for everyone, but they are sometimes lacking for Alzheimer’s patients. This aide in an Alzheimer’s unit in Kyoto knew how to bring good humor, laughter, and an elevation of mood to the people with whom he worked.
After being diagnosed with dementia at age 68, this woman was taken care of at home by family and domestic servants. Her aggressive behavior, however, became problematic, and she was enrolled in the ARDSI day care center in Cochin. Now she chats and tells stories there, but she has frequent spells of sadness about the death of two daughters. Trained staff members and volunteers, such as Geetha, are understanding and kind to her.
Anna led an extraordinarily rich life, working from her teens until her late seventies, then part-time until her mid-eighties, all while raising two children. She was also active in local politics, and volunteered in a number of community organizations up to her diagnosis with moderate dementia a few days before her ninety-fourth birthday. Now at ninety-seven, she has taken up drumming and tai chi at the facility where she resides. She loves family visits and meeting new people.
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.
Kerry Mills is now a “dementia coach”, after a decade of administration in specialized residential communities. Her presence brings sunshine into the room, and every resident at Hearthstone this day responded to her with delight. She danced with many of them for almost an hour while Linda sang. To me, Kerry is the “ideal caregiver”, and my mother, who benefitted from her loving attention for several years, felt the same way.
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.
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’.
Marie-Therese 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.
The doors from this group home in suburban Kyoto are not locked, though there is careful surveillance to make sure residents do not leave the grounds unaccompanied. This woman loved going outdoors, breathing the fresh air, and admiring the bamboo garden next door. Recent research suggests that by sitting in a Japanese garden for brief periods, Alzheimer’s patients can experience reduced stress and enhanced well-being.
As her cognitive difficulties increase, Maria is finding it more difficult to continue to live in her small home in the Santo Domingo barrio. She is coming to realize the necessity of moving to a rural area where she has family, but the idea of leaving her home of many years is painful.
Carmichael’s daughter had raised a pet rabbit, and her father learned in a social work class about how effective animals could be with ill and dying people. He and Chi went for training with the SilverPaws program in Houston. The visit to Mavis was the first time they went “to work” after being certified. Mavis was thrilled with having a soft bunny to caress, and Carmichael was enthusiastic about his new activity.
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.
Kate, a music therapist in the Alzheimer’s unit of a specialized hospital formed a small “band”. Three male residents, all with quite advanced dementia, named their group “The Windjammers”. They loved meeting, jamming, and joking about going “on tour”. Rolland didn’t want to play this day, but he was engaged with the music and his friends. He wept a bit as he recognized a song he knew from his youth, and his daughter wiped away his tears.
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.
Mr. Hamajima was terminally ill, and he wanted to die at home, surrounded by his wife, children, and grandchildren. He was allowed to leave the hospital because a palliative care physician could make regular visits. His wife’s advanced Alzheimer’s disease did not prevent her from enjoying time with the family on her 88th birthday, as everyone exuberantly sang Happy Birthday.
We should always remember that people with dementia are not "children" and should not be treated as if they have reverted to childhood. Like other adults, though, they can love things children love, such as a birthday celebration.