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2013 Workshop

Highlights of the Sold Out Alzheimer’s March Interfaith Conference

The sixth annual interfaith workshop sponsored by the Alzheimer’s Association and HealthCare Chaplaincy quickly sold out, and with a waiting list of 35, prompted the need for a second event on June 12.  Designed for health care chaplains and clergy, the all-day event on March 21, which included breakfast and lunch, was held in the Alzheimer’s Association’s new and expanded headquarters near New York’s Grand Central Terminal.

Highlights of the workshop included an update by Jed Levine, executive vice president and director of programs and services of the New York Chapter, on the progress made on diagnosis, treatment and resources in working with people with dementia. Dan Cohen, executive director of Music and Memory, reported on the continuing success of his year-old iPod project in helping patients with dementia. Stephen Post, founding director of the Center for Medical Humanities, Compassionate Care and Bioethics at Stony Brook University spoke about hope and ethics in caring for people with what he prefers to call, “deep forgetfulness.” Health care chaplains and clergy in the audience had many questions for the speakers and there was a lively interchange of information and expressions of the urgency of dealing with the growing number of people with Alzheimer’s disease (AD).

“This is the public health issue of the 21st century,” Levine said, presenting the audience with the newest developments in research and care of Alzheimer’s patients. He said that while there is still no cure or prevention, “there are many improvements in the way the quality of life can be made better for such patients.” Levine presented a dramatic chart illustrating the swift upward projection of AD compared to the downward direction of other life-threatening conditions such as cancer and heart disease. One in eight Americans over 65 has AD; it affects two percent of people 65-74; 18 percent of people 75-84; and 42 percent of people 85 or older.

Latinos appear to be more likely (one to one and a half times) than older whites to get the disease and older African Americans are about twice as likely to develop AD and other dementias as are whites. “We don’t know the reasons yet,” Levine said, “but research indicates that higher rates of vascular disease in these groups may put them at greater risk of AD.” Growing evidence also suggests risk factors include out of control diabetes, high blood pressure and high cholesterol.

There is genetic research, such as the long-term study of the extended family of 5,000 people in Colombia, South America, who go into cognitive decline at the age of 45, and have dementia by age 51 progressing quickly from there. While our age, genetics, and family history can’t change, research is beginning to see clues about other risk factors that perhaps we can influence, such as overall healthy aging that may keep the brain healthy. Eating a healthy diet, staying socially active, avoiding tobacco and excess alcohol and exercising mind and body, may play a preventive role. Researchers are also looking at the link between a serious head injury from a fall or accident, as well as in contact sports.

The early stage of AD is characterized by short term memory loss such as forgetting recent events, misplacing things and forgetting how things work, such as the TV or the dishwasher, but can remain independent in personal care and grooming. By the middle stage it is unsafe to leave the person with dementia alone because they begin to wander and get lost. This is a condition known as sundowning, after the time of day it usually occurs.  The Alzheimer’s Association has a Medic Alert program, with an electronic bracelet worn by patients, so they can be located. They have had 99 percent success in locating all patients who have wandered and the New York chapter of Alzheimer’s Association works with a special detective in the New York Police Department to keep these persons safe.

In the late stage an AD patient may not recognize his or her own reflection in a mirror and becomes unable to care for themselves. While there are a variety of drugs, most treatment for behavioral symptoms includes anti-psychotics and anti-depressants. Non-pharmacological approaches include activities involving music, art and physical activity.

 

BRAVO!

The response from the attendees at the sixth annual interfaith workshop at the Alzheimer’s Association was overwhelmingly positive. Before they left, 38 of the attendees completed a program evaluation. All “agreed” or “strongly agreed” the program was effective, that they were satisfied with the program, would recommend it to others, they learned something new, and something they can use. Two particular presentations, “Music and Memory” by Dan Cohen, and “Hope, Ethics, and the Deeply Forgetful” by Stephen Post were clear favorites.

Of the 38 responders, 28 said this was their first time at the Alzheimer’s Association. Thirty of the 38 were women, and 28 were clergy or health care chaplains. A few people said they were relatives of Alzheimer’s patients. Most had heard about the event through a colleague or through HealthCare Chaplaincy.

Appreciation for the workshop can be found in the many positive comments such as “Thank you for a profound education in a short time.” Another wrote, “I’ve been so stimulated by all of the ideas presented today that I want to bolt out at its close and go back to work.”

“There are no medical answers yet, but we know so much,” Levine said, “about how to help. There is a therapeutic nihilism, or hopelessness around the disease, but we can do a lot to counteract the hopelessness and fear.  It’s important to remember that especially in the early and middle stages, given proper supports, AD patients can maintain a good quality of life. The ability to experience pleasure, humor, beauty, and love are still possible, especially with very good care.”

Levine said The National Alzheimer’s Plan to overcome the crisis will ensure the coordination and evaluation of all national efforts in AD research, clinical care, institutional, and home and community based programs and their outcomes. Legislative priorities are funding for the National Alzheimer’s Plan, including $100 million for research, and the HOPE for Alzheimer’s Act, for early detection, care and support.

An AD patient can suffer with the disease for as long as 20 years, although the average is eight. However, most people live with symptoms for a period of time before they are diagnosed. On average Medicare spends nearly three times as much for patients with dementia as for those with other conditions. For Medicaid that figure is 19 times as much. The annual cost of caring for people with AD is at least $200 billion and expected to reach $20 trillion over the next 40 years.

The emotional impact of AD on the caregiver cannot be overstated. Levine said that the Alzheimer’s Association is here to help families who feel cut off, isolated.  “The burden of care giving is enormous.” He told of recent visits with the Borough Park (Brooklyn) orthodox community; where 80 percent of the aging are holocaust survivors. They also broke through with the Chinese community, where even saying the word (dementia or Alzheimer’s) was taboo. Alzheimer’s caregivers experience greater levels of social isolation, depression, and stress when compared to other caregivers. About a third become depressed and family conflict worsens. Fatigue, reduced immune function, new cases of hypertension and heart disease are the physical results of this stress and these caregivers make more doctor visits, emergency department visits and hospital admissions. The older spousal caregivers may actually die before the patient.

The workshop ended with a closing meditation by the Rev. Gregory Johnson, founder of the New York City Caregivers Coalition. To read about how his organization helps caregivers, go here to a previous PlainViews® story:  “Family Caregivers are the Silent Patients.

Music: The Back Door to Emotional Memories

The modern iPod is not only for the young and hip, but has proven to be an astonishing asset for older people with Alzheimer’s disease and dementia. Dan Cohen, founder and executive director of Music and Memory, spoke at the recent Alzheimer’s Association workshop in New York about the growing success his program, which provides personalized music to patients in nursing homes. It is helping caregivers and families connect with people who responded to little else.

Cohen, a former consultant/trainer for the US Department of Education, holds an MSW degree from Adelphi University, and has a background in high tech training and software applications with social work, specializing in vocational rehabilitation and community services organizing. He founded Music and Memory in 2006 with a simple idea: Someday, if he ended up in a nursing home, he wanted to be able to listen to his favorite ‘60s music. When he saw how popular iPods had grown, he thought why not bring used iPods as well as new ones into nursing homes, to provide personalized music for residents?

Well, his brainstorm paid off, not only for Cohen but for scores of others. He said 105 nursing homes in 25 states and seven countries are now using the program and the city of Toronto gives an iPod to anyone with Alzheimer’s disease. At the University of California at Davis, a neurologist told Cohen about a man who when he heard James Brown, got up and walked. In California, they cut in half the use of drugs (anti-psychotics) for patients using the iPod program. At the Genesis nursing home chain, headphones have helped stop the patients’ resistance to care in the morning whether it’s music or birdsong they listen to.

Music and Memory became widely known in 2011when an unresponsive 94-year-old man who spent his days slumped in a wheelchair at a Brooklyn nursing home, was given an iPod and headphones. He looked up with eyes wide open, began tapping his foot and beaming a smile of joy. A film clip of this man’s reaction to music aired on “Good Morning America” and a You Tube video reached a wide audience, but Cohen said when it was discovered by some kid who re-titled the clip “this is us in 70 years,” it went viral being played 7.7 million times that year. The video segment is from an hour-long documentary film, “Alive Inside,” produced by Cohen, and Manhattan filmmaker Michael Rossato-Bennett to document his mission to bring personalized music to every nursing home in the country. Many residents suffering from memory loss seem to “awaken” when they are able to listen to music from their past.  You can see the videos in a PlainViews®  story from last year called Strike Up the Band here.

The iPod helped Henry, the man in the video, who had not spoken in years and who is now, even without headphones, able to converse with his caregivers, about his love of music, especially that of Cab Calloway. Through the music, Henry has remembered who he is, Cohen explained. Patients in the advanced stage of dementia are generally viewed as not being able to enjoy pleasure. Well, that may not be altogether true if Henry and the hundreds of other people in nursing homes are any indication.

The Back Door to Emotional Memories

Music capitalizes on long-term memory, which is the last to go. The neurologist Oliver Sacks, makes an appearance in the film to attest to the importance of music and the mysterious ways it functions inside the brain. Sacks, the author of Musicophilia: Tales of Music and the Brain (Knopf, 2007), is professor of neurology at New York University and is a partner on the Music and Memory project. “Songs from youth kicks off memory; it’s like the back door to emotional memories,” according to Sacks. “Music brings back the feeling of life when nothing else can.”

According to The Alzheimer’s Foundation of America, “Music can spark compelling outcomes even in the very late states of the disease. This happens because rhythmic and other well-rehearsed responses require little to no cognitive or mental processing. They are influenced by the motor center of the brain that responds directly to auditory rhythmic cues. A person’s ability to engage in music, particularly rhythm playing and singing, remains intact late into the disease process because, again, these activities do not mandate cognitive functioning for success. Music from the person’s young adult years--18 to 25--are most likely to have the strongest responses and the most potential for engagement.”

Name That Tune?

Cohen was asked about patients who have no family. How can we learn what music they would like? “We can ask about favorite music on the admission forms,” he explained, “such as genres, era, etc. There is also ethnic music, music of the old country in the language of the old country that could be very important.” Cohen suggested that a caregiver could find out by making lists and seeing the reaction from the patient. At one nursing home, Cohen asked, ‘‘Who is your most disruptive patient?” This was a man about whom they knew little other than that he was a veteran. They made a 30 song list of patriotic music and the man calmed down. He told the staff, “I used to watch John Wayne movies with my dad.”

A chaplain in the audience said, “I sang for my mother every day, World War II songs.” She said this helped keep her mother less angry during medical exams. Cohen said of Music and Memory, “It offers a little hope. They (patients) often sit up and feed themselves, they can smile again. He told of a patient at a Genesis facility who actually gained ten pounds because he was more engaged. Another example is of dialysis patients who can listen to music rather than just lie there during the process. 

Cohen’s organization did a music effectiveness survey and found that personalized music brought more pleasure to residents most of the time (73 percent) and all of the time (27 percent). More than half of those nursing homes surveyed agreed it cut down on the use of anti-psychotic medications. It also lifted depression, changed behaviors, reduced anxiety, even helped in pain reduction. It was good for the staff, too, Cohen added. And 94 percent of nursing home administrators are likely or very likely to recommend the program to other nursing homes. More information on research and the survey can be found at the Music and Memory website here.

A Few Skeptics

Cohen noted that some nursing home administrations are reluctant to engage the Music and Memory program and they site these reasons:

  1. It can’t be legal (the equipment)
  2. Theft of equipment
  3. Staff has no time.

“Actually, it takes less time because it cuts down on agitation,” Cohen explained. People become more mobile, more verbal, and less depressed. They are more energized, more cooperative, less agitated. It’s an upfront activity. “Yes it takes time, but only to set it up,” he explained. And it is perfectly legal.

Some administrators suggested that head phones would isolate people; that they would simply listen to their own music and avoid other activities. Some wondered how Cohen’s program was any different from the ambient background music that many nursing homes play.  Personalization is the key, according to Cohen.

“It’s a quality of life issue,” Cohen said, noting how visitors often don’t want to come to see the patient “because she doesn’t say anything,” but music changes that. It is also therapeutic for the family. It sets a tone, gets people talking, having a good time. In the future it could help keep people home longer. He said kids are into the technology, and suggested grandkids can arrange the play lists. Cohen told of a high school band that gave an annual concert at a nursing home. One resident said, “I look forward to this all year.” This gave them the idea to package that concert on the iPod, so the patient could hear it any time.

Professional caregivers can find many resources on the Music and Memory website such as free newsletters, a blog, current research on music and the brain, as well as resource guides such as “Making the Case for Personalized Music: A Guide for Elder Care Professionals.” There is also a Music and Memory certification program.

Suffering Deep Forgetfulness

 

Tools to Help us Connect

Nancy Lee Hendley and Alejandro Berti, who are Dementia Care Trainers at the Alzheimer’s Association, NYC Chapter, share several tools that help caregivers connect with patients. One is a simple loose leaf binder Berti created with images of things that may be relevant to the particular patients, such as old movie posters. This “Connect Book,” can be personalized for each patient. When Berti noticed that in many long-term care facilities, there were often large picture books of animals, flowers, etc., he wondered if it would not be more helpful to create a book with images specific to the interests of each person. “I chose places, foods, historical events, and TV shows according to the stories that the residents shared.”

In researching each person he learned where they grew up, what jobs they held, hobbies, sports, songs, heroes, and then placed appropriate images in personalized books. The family can help in brainstorming. He suggests using Google to find images online, make the images large and clear. Put the images into three-hole plastic sleeves to insert in the binder. If it is a picture of Elvis, you present and the person says, “What a handsome man,” that is a good start. Sometimes they may smile or open their eyes or turn their head toward you.  Alongside each image is a page of text, a simple explanation of the meanings of the images meant to help caregivers understand the potential meaning to the patient.

As Hendley explained, caregivers should assemble “a bag of stuff,” objects, sounds, symbols, images, that help to connect to the person’s life. “We can always get the information from the intake applications as well as families,” she said, noting that while they do ask questions at intake, it is often not the most important information for our purposes. “For example, nobody asks about the dog, which may have been beloved by the patient.”

“We don’t need lots of technology, Hendley said, “but we need tools.”

The Alzheimer’s Association has an “Activities at Home” booklet available in PDF for download here.  Other helpful resources are available in the Caregiver Center that chaplains and other professionals may be able to adapt for their practice.

“I like to say they suffer deep forgetfulness,” said Stephen G. Post, PhD, who gave a moving talk at the Alzheimer’s Association workshop about hope and ethics involving people he terms, the deeply forgetful. “We can’t say a person is no longer there, it’s demoralizing.” Post is the founding director of the Center for Medical Humanities, Compassionate Care and Bioethics at Stony Brook University on Long Island and the author of many books, most recently, The Hidden Gifts of Helping: How the Power of Giving, Compassion, and Hope Can Get Us through Hard Times (Jossey-Bass, 2011).

In talking about communicating with forgetful patients, Dr. Post related a story about a long-time friend who loved telling Irish jokes, but of course, they all disappeared as his dementia progressed. In an attempt to communicate with his friend, Post began telling his friend some of the Irish jokes he remembered and his friend laughed and laughed. “It was a good connection.” Post also told of meeting a man in an Ohio nursing home who had advanced forgetfulness.  “Jim did not respond verbally, but he smiled and gently placed a twig in my hands. After a minute I smiled and handed it back to him.” Post learned from the nurse that Jim had grown up on a farm in rural Ohio and that he loved his father very much. In his current state, Jim has gone back in time to the person he most associated with tender loving care. As a boy Jim was given the chore by his dad to bring in kindling for the fireplace. “The twig was a symbol of the warmth and love Jim experienced from his father and he was sharing that warmth with me.” In another anecdote, Post told of a man who always wore or carried around his cowboy hat. Nobody could take it away from him, no matter how crumpled or bent it became. “Some level of the self was still intact.”

This was also true in the case of Willem de Kooning, the well-known abstract expressionist painter who suffered from dementia and Alzheimer’s disease (AD) in his late years. Post showed two de Kooning paintings. “Woman, 1,” painted in 1950-52 at the height of the artist’s fame, is intense with a frenetic energy of line and color. During his years suffering Alzheimer’s disease, de Kooning’s paintings become almost sublime, with simple, fluid lines, softer colors and lots of open (peaceful) space, such as in “untitled, 1987.” Those late paintings were exhibited at Museum of Modern Art in New York, in 1997 but most critics considered them unimportant, not the same artist. Post, however, believes this art is simply a different expression of de Kooning.

The 18th century writer, Jonathan Swift (1667-1745), was another artist who suffered dementia. Swift, Post said, had a lifelong fear of madness, and yet he suffered with dementia following a stroke during the last years of his life and died at 78. In order to help others, Swift left the bulk of his estate to start a hospital, St. Patrick’s, for the deeply forgetful, an institution that would respect people in their forgetfulness. Swift’s concern for the mentally ill began in London while he was governor of Bedlam hospital and was horrified by the practice of putting “mad” inmates on display to amuse the public. In Gulliver’s Travels, his most famous work, Swift created a colony of struldbrugs, people who are immortal but are despised for their decrepit aged appearance.

Citing his 2004 article, “Alzheimer’s and Grace,” , Post stressed again that, “As caregivers, we should talk even to the most cognitively disabled, calling them by name (which sometimes surprisingly, may come). We should speak with a warm and calm voice, with a joyful facial expression, bending down to make eye contact, communicating with them rather than around them. We can use pictures, music, hymns, Scripture, poetry, meaningful symbols, and short simple prayers.” Those whom severe dementia has made deeply forgetful do forget much that is crucial to life as ordinarily lived; they may even forget those who love them most, and this is terribly painful to the forgotten ones. Yet they may have fleeting moments of a “still faint glow of light” when they recall vague traces of those who love them.

“We need to encourage family to stay with the ‘real’ person’s narrative,” Post said. Adult kids can sit down with their parent and assist with oral feeding rather than relying on the feeding tube, which is so often used when patients refuse to eat. Comparison studies show no benefits to survival of patients being fed by the tube. When patients don’t cooperate with eating, he suggess using cues with language. Rather than ask, “What do you want for breakfast? Ask, Would you like ham and eggs, or would you like Cheerios?” “When technology stops,” Post said, “that’s when the healing begins. Don’t talk to the disease, talk to the soul….not to cure, but to care. See things just the way they are.”

 Post who has appeared before Congress to talk about volunteerism and public health, said, “We need early stage persons with AD talking to Congress and others,” in order to get a national plan to address the growing number of deeply forgetful.  His 1995 book, The Moral Challenge of Alzheimer’s Disease: Ethical Issues from Diagnosis to Dying (John Hopkins University Press, 1995) was designated a “medical classic of the century” by the British Medical Journal, which wrote, “Until this pioneering work was published in 1995 the ethical aspects of the one of the most important illnesses of our aging populations were a neglected topic.”

Last year Post received the Pioneer Award from HealthCare Chaplaincy; his address was a PlainViews®  story called “Plant a Rose in the Desert.” The award was established in 2011 to honor the singular accomplishments of an individual whose seminal research and/or innovative practice shape the way we think about and understand the complex and critical issues in contemporary health care. Post is also the recipient of the Alzheimer’s Association’s distinguished service award.

Post recalled his grandmother who died years ago of Alzheimer’s disease. She loved peanut M&Ms candy and she would suck the candy and chocolate off the nuts and place them back in the bowl. Whenever Post visited her, she would offer him some candy from the bowl, as she had over the years offering candy to her grandson. While Post never ate those nuts, he did take joy and delight in the fact that so deep into the disease his grandmother still had the heart of a giver, still expressed love in this small way, and such love certainly brought delight to me. “Her bowl of nuts always made me laugh and that made being with her more joyful.”

Alzheimer’s and Dementia Resources and Tools

Chaplains and other members of the interdisciplinary/transdisciplinary team benefit from having a toolkit of resources to be able to offer to patients and families.  This can be especially important for the loved ones of Alzheimer’s patients.

All services of the Alzheimer’s Association are free to people with dementia and their family caregivers. There are chapters around the country and health care chaplains are encouraged to use the resources of the Alzheimer’s Association by visiting the national website, or by calling the 24-hour Helpline at 800-292-3700. Here are some of the services available.

24-hour helpline (800-272-3900) is staffed round the clock every day of the year for people to talk with a caring professional about their concerns, learn about education programs for patients, caregivers, family and friends. For families who need more in-depth consultation Alzheimer’s Association provides confidential care consultation from master’s level clinicians who can help with decision making support, crisis assistance and education on issues families face every day. Help is available in over 180 languages and dialects using our translation service. Alzheimer’s Association offers referrals to local community programs, services and ongoing support.

Education and training in the New York City chapter includes: The Basics of Dementia, Medicaid home care seminar, nursing home and residential placement, and monthly education meetings. Education and training is available for families, as in our two-day family caregiver workshop, where they can learn how to communicate with their relative with AD, activities to do with them, and how to care for themselves. Training for professionals such as staff at nursing homes and in ERs, as well as home health aides is available in Spanish and Chinese as well as English.

Caregiver Support Groups: The Alzheimer’s Association has designed support groups to provide emotional, educational and social support for caregivers through regularly scheduled meetings. The Alzheimer’s Association helps participants develop coping methods and encourage caregivers to maintain their personal, physical and emotional health, as well as optimally care for the person with dementia.

Support Group Leader Training. This is an extensive four-day workshop designed for professionals and former caregivers who wish to lead family and early stage support groups. This program employees a didactic and experiential approach to training new support group leaders.

Medical Alert and Safe Return. Six out of 10 dementia patients will wander away and if they are not found within 24 hours, close to half of them will never be found, or found seriously injured or dead. New York City has a 99 percent success rate in finding wandering patients.  The Alzheimer’s Association bracelet/pendant identification program has over 183,500 enrollees nationally (17,000+ in New York City). When someone is missing the Alzheimer’s Association works with law enforcement and provide outreach for the public, professionals, and ongoing support to family caregivers.

Newsletter and Website. Advancing Care, a newsletter for staff in long-term care settings, provides practical tips about improving care for residents with dementia. To subscribe visit www.alznyc.org/LTC. The website www.alz.org/nyc features up to date information about events, meetings, and “find local resources” database for New York City.

Handouts from the Workshop

  1. Dan Cohen 2013 handout 1 Music Memory Article
  2. Dan Cohen 2013 handout 2 Care Advocate Newsletter
  3. Dan Cohen 2013 handout 3 Huffington Post
  4. Stephen Post 2013 handout 1 Five Sources of Hope AD
  5. Stephen Post 2013 handout 2 Not Always a Burden Article

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