New England Regional
Coping with Alzheimer’s
In the summer of 2006 Harvard professor emerita Barbara Gutmann Rosenkrantz ’44, RI ’69—long revered for her work on the history of public health and for promoting women at Harvard (she was among the earliest full female professors and the first female House master)—called her daughter, baffled. “She was having trouble making a salad,” recalls Debby Rosenkrantz. Was it a case of low blood sugar, or maybe related to a recent arm rash? “I came over with some orange juice and helped her finish making the dinner.”
Yet other worrisome signs followed: garbled e-mails, irrational arguments, insomnia. “And she had notes to herself and friends posted all over the house,” adds Rosenkrantz, a social worker in Cambridge. “My stepfather was very busy trying to keep things from unraveling. They were very much in love and had gotten married late in life: when she was in her 60s and he was 71. They would have liked to have more years together.” That fall, however, Barbara Rosenkrantz was admitted to the Harvard-affiliated McLean Hospital, where she was diagnosed with vascular dementia and Alzheimer’s disease.
Some 5.2 million Americans have the disease, according to the Alzheimer’s Association, and that number is likely to nearly triple, to 13.8 million, in 2050.
“Alzheimer’s is not just an individual disease, it wraps its tendrils around an entire family,” says psychologist Paul Raia, vice president of clinical professional services at the Massachusetts/New Hampshire chapter of the Alzheimer’s Association. Often families know long before a diagnosis “that mother or father is not acting the way they used to, or should,” says psychiatrist James M. Ellison, M.P.H. ’93, director of the geriatric psychiatry program at McLean Hospital. Naming the cause of disturbing personality changes, disconnectedness, depression, or irritability, is obviously distressing, but it can also bring relief. “A diagnosis opens doors to resources,” Ellison explains. “And it becomes clear where the family can turn for help.”
The local chapters of the Alzheimer’s Association, for example, offer early-onset and later-stage support groups, some run by Raia and Debby Rosenkrantz, who know each other. The organization also has a 24-hour-help hotline, educational workshops, updates on disease research, and even social activities that help address rampant isolation for both patients and caregivers. Rosenkrantz finds their care consultations, an expanding service, especially helpful. Staff meet with families and friends to help figure out what to anticipate, how to prepare for it, what the options are, and even to offer some financial counseling.
Resources are aimed at keeping people with Alzheimer’s engaged in social, physical, and cognitive activities throughout the course of the disease—and providing outlets and respite for exhausted caregivers. “One thing we know is that if those with Alzheimer’s spend significant time doing nothing,” Raia explains, “they will have more challenging symptoms and the illness will most likely progress more quickly. A major issue for families is giving their loved one purposeful engagement—for example, having them help with cooking and gardening—because the loss of meaning in life is so fundamental to this disease.”
The first tier of care comes from adult day programs, which Raia calls “the biggest bang for the buck.” Five days a week, from 8 a.m. to 3 p.m., people can come and make friends, share meals, do activities, and get physical and cognitive exercise. The costs range from $60 to $100 a day; some also provide transportation for an extra fee. Medicaid pays if the individual qualifies for “community-base Medicaid,” he says, which requires a lower income level. Families with more resources typically pay out of pocket.
Debby Rosenkrantz (along with her sisters, Louise and Judith ’74, and their stepsister, Molly Marshall), worked together as Barbara Rosenkrantz’s condition worsened and it became clear that her husband (who moved to an assisted-living community a year later) could not meet her increasing needs. They tried home-based care, but found there were too few substantive activities and their parents felt uncomfortable having strangers around. Even a well-regarded day-care program did not work out: “My mother spent the whole time in the front room waiting for Nat to pick her up: it made her very anxious to be separated from him,” says Debby. “She wouldn’t engage with the activities or other people.”
Ultimately, they settled their mother at Rogerson House, a progressive assisted-living community. Her Harvard pension covers most of the cost, and the family sometimes pays for extra activities, such as personal exercise sessions and physical therapy. “It was not a financial crisis for us, fortunately,” Debby Rosenkrantz notes. “The hardest thing is when the decision about what you can do for your parents is influenced by what you can afford.”
If the spread of Alzheimer’s continues as predicted, the disease could cost private and public payers combined more than $1 trillion a year. Currently, regional high-end assisted-living facilities with dementia care can cost as much as $7,000 or $9,000 a month, and rely primarily on private payments that only a small fraction of Americans can afford. Nationwide, the average cost of Alzheimer's care at an assisted-living community is about $4,800 a month and between $6,400 and $7,000 a month at a nursing home, according to a 2010 MetLife Mature Market Study. However, prices range widely and depend on an area's real-estate costs and overall affluence among residents. The majority of elders will ultimately go to nursing homes, reports Harvard Kennedy School professor of public policy Amitabh Chandra, who is on the advisory panel for the Congressional Budget Office. Overall, he adds, there will be a growing need (and therefore increasing public costs) for additional elder care, such as skilled nursing, home healthcare, and rehabilitation services. “Most people have not saved for retirement, let alone long-term care,” he says. “It’s a challenge that our country has never really grappled with. If we vote to cover this care, then we have to decide: whose taxes are we going to raise, or which programs and benefits are we going to cut? We don’t have a sensible mechanism in the United States to confront these long-term trade-offs.”
Chandra does note that these projections for Alzheimer’s do not take into account the potential impact of scientific breakthroughs that may offer hope of slowing the disease. “Research on new medical innovation and technology, of the type that is conducted at Harvard and at the Broad Institute,” he adds, “may save us from the fiscal train wreck that awaits us.”
As scientists attack the disease itself, others have been working to improve conditions for those already afflicted. The cultural movement to reform and humanize American elder care, especially at nursing homes, began in the late 1970s. Spearheaded by The Pioneer Network, the movement’s basic principles are also now widely promoted by others, including the Alzheimer’s Association and geriatrician William Thomas, M.D. ’86, whose Eden Alternative approach and Green Houses are slowly growing (see “At Home with Old Age,” November-December, 2008, page 80).
The focus is on creating more homey environments, with natural light and gardens, and integrating features, such as color-coded floors and walls, circular walkways, and fewer locked doors, that foster calmness and independence, especially among those with memory loss. An intangible goal, which requires building human relationships, is to meet elders’ emotional, cognitive, and even spiritual needs.
To that end, Paul Raia in 1989 developed “habilitation therapy”—a communication technique based on the neuropathology of Alzheimer’s. “The ability to feel, perceive, respond to, and evoke emotion is there in the brain until very near the end,” he explains. The therapy aims at creating positive emotion and sustaining it “in whoever people become as they move through the stages of the disease.” If a patient wants to visit her deceased mother, the caregiver does not “reorient reality” by asserting the truth but responds to the underlying feeling of sadness and loss by saying: “I hear your mother was a wonderful lady, let’s talk about her,” and taking out a photo of, say, a day at the beach mother and child shared, and talking about it. This seemingly common-sense or compassionate approach nevertheless has had to be widely taught and integrated by care organizations throughout New England, including the 27 Massachusetts-run home-care agencies.
And such principles still don’t constitute the care norm. Massachusetts’ nursing homes ranked twelfth in the nation in terms of using antipsychotic medications, says Raia, citing data collected from the federal Centers for Medicaid and Medicare Services for a 2010 Boston Globe analysis. “The highest users of antipsychotic medications are the nursing homes with the lowest number of nursing minutes and least number of activities for patients,” he adds. “The medications are being used to compensate for that and control behavior.”
Despite the region’s medical and healthcare brain power, physician and Harvard Medical School professor of population medicine Muriel Gillick says that “safety concerns and medical interventions take precedence over mental comfort and quality of life” at most care facilities. Gillick is the author of Tangled Minds: Understanding Alzheimer’s Disease and Other Dementias; The Denial of Aging: Perpetual Youth, Eternal Life, and Other Dangerous Fantasies; and Lifelines: Living Longer, Growing Frail, Taking Heart. Regulations and costs are always going to be factors in health care, she acknowledges, but adds, “It’s not clear that some of these more philosophical or psychological approaches actually cost so much more than the traditional ones. It’s more about retooling and rethinking what it is you are trying to do”—and encouraging families to assert their rights and priorities regarding which (or whether) medical procedures are worthwhile at the end of life. Gillick says many elderly people with dementia have to come into the hospital for “painful or uncomfortable procedures and testing in a strange place, and they are frightened.”
Even the patient-centered nursing homes—such as the one that houses Gillick’s father, who has moderate dementia and Parkinson’s—can be lacking. (She explored this topic in “Culture Change in the Nursing Home: Boon or Boondoggle,” a June post to her blog “Life in the End Zone.”) The old-model nursing home, she says, lined up residents in their wheelchairs in the hallways, where staff could keep an eye on them. Her father has a private room, but he didn’t call for help when he needed it, “so they put him in the dining hall, where they can see him, and he sits there now and does nothing, staring ahead at whatever the day’s program is,” she reports. “It is the same as being lined up in the hallway.”
Because the “continuum of care” has expanded, she says, with more people than ever before using home-care help, “nursing homes have come to serve a very impaired population, and assisted living in many respects occupies the position that nursing homes did” 20 years ago. Gillick and Raia agree that between 50 and 65 percent of those in assisted-living communities have moderate or later-stage dementia, and that the number has risen within the last few decades. She questions whether those facilities can truly care for them. “These are patients with what neurologists call poor executive functioning: they can’t plan, can’t organize, can’t figure out what’s going on around them,” she explains. “They need to be constantly reminded of what they are doing and engaged with throughout the day. So the idea of maintaining someone’s independence and privacy is nice, but I would be skeptical about how often the staff in assisted living are keeping up with someone, or whether they are just leaving them in their rooms.”
Ideally they don’t. The Alzheimer’s Association offers a detailed consumer’s guide to evaluating any facility. Questions include: Is the unit quiet and are the rooms homey? Is the staffing ratio one-to-five during the day? Are families active members of the care plan? What percentage of patients is on psychoactive medications? What is the staff’s philosophical/psychological approach to dementia? How are they trained?
Rogerson House, where Barbara Rosenkrantz now lives, practices habilitation therapy and also provides programs in music and art, excursions, and a beautiful backyard. Even though Rosenkrantz is now in mid-stage dementia, she goes to concerts, which she loves, paints watercolors, and still enjoys simplified crossword puzzles. Research shows that arts therapy/education offers immediate, “in the moment” emotional and cognitive experiences that are especially beneficial to those with memory loss, Debby Rosenkrantz reports. Barbara Rosenkrantz also picks up on many current events, such as the Trayvon Martin case. “She is totally engaged and can have discussions and opinions, which is bizarre to me,” her daughter adds, “because there are other things she doesn’t remember for 30 seconds. The parts of the brain that are functioning and those that aren’t are baffling.”
Perhaps most important: the Rogerson staff “are incredibly loving toward her, which can’t always be easy,” and know who emotionally connects best when Barbara Rosenkrantz gets anxious. A low dose of medication for anxiety, Debby Rosenkrantz also reports, “has been a life-saver.” Her mother cannot be rationalized out of those feelings, but she can be distracted by other topics and activities that override it. “My mother will sometimes say, ‘I don’t want to spend the rest of my life here,’” she adds. “And I say, ‘OK. I hear you. I know. We will keep that in mind and find out what else is out there. But for now this is the best place.’ And that reassures her, because she knows that I will keep looking.”
Sociologist John Zeisel, a 1971 Loeb Fellow and a former assistant professor of environmental behavior studies at the Graduate School of Design (see "Healing By Design," January-February 1998, page 40), is the founder and president of Hearthstone Alzheimer Care. He is a pioneer in targeting the emotional and neurological strengths of those with dementia through academic and Montessori-style classes as well as music, visual art, and theater. “The more people are treated like patients, the less they are treated like persons,” he says. “It’s a human-rights issue. We don’t consider older people or those with dementia as having the same rights as long as we see them on a downward spiral.”
Hearthstone, with three residences in Massachusetts and three in New York, focuses on two key concepts. First, by engaging people in meaningful ways, “they avoid the four As of Alzheimer’s: anxiety, agitation, aggression, and apathy,” Zeisel says. “You can’t be screaming at someone if you are improvising a part in an absorbing play. You cannot be agitated if you are listening to Peter and the Wolf and trying to focus on which instruments represent which characters. This engagement—not just ‘stimulation’—is the antidote to behavioral symptoms in dementia. And what’s more meaningful than culture and the arts?”
Second, says Zeisel, neurologically, the arts draw on a distributive system in the brain, as opposed to tasks like word-finding, which are more localized. The arts can involve repetitive actions—practicing drawing shapes and figures, painting layers of colors, reciting a script, hearing or playing rhythms, musical motifs, and choruses. Through repetition, people with dementia not only find joy in the moment of purposeful creativity, as anyone does, he explains, but they learn and remember more as well: “The arts draw on procedural learning and emotional memory, which last until the end of one’s life.”
Both are nonpharmacological approaches “that reduce depression and increase engagement and, in the end, provide people with Alzheimer’s with a sense of personhood,” according to Zeisel. Two federally funded clinical studies currently run by the Hearthstone research division explore whether other aspects of the arts can do the same: an improvisational theater project that ultimately yields a script and a production, and a project that looks at the role of books in terms of both their narrative content and their form (e.g. page count, size of the print, weight). The results could also enhance the cultural events, tours, and teachings specifically designed for persons with dementia and their families through ARTZ: Artists for Alzheimer’s, co-founded by Zeisel and Sean Caulfield, Ed.M. ’13.
Concerts and dancing also take place at the White Oak Cottages. Part of the Fox Hill Village retirement community in Westwood, Massachusetts, these two 12-bedroom residences are based on the Green House model envisioned by the geriatrician William Thomas (whose work can be explored at ChangingAging.org). Round-edged walls and color-coded carpeting make it easier for people to walk freely, while glass doors open, without a staff member’s key, onto a garden with a pathway and secure fencing. White Oaks is a soothing environment: classical music plays lightly and TVs, an intrusive presence in most facilities, are found only in patients’ rooms.
In each house, a large open-plan common space with a cathedral ceiling offers living and dining areas along with a large kitchen—just like home. “When people wake up, they can come out of their rooms and smell coffee brewing and bacon cooking” and watch and even help nurses make breakfast, says Christopher Warner, a psychiatric nurse, who is the cottages’ “guide.”
The term is specific to the Green House model, which emphasizes communal life that is determined not from above, but by residents’ needs. “It’s the opposite of a nursing home where there’s a schedule that everyone has to fit into. Here, it’s imperative that we are flexible and even improvisational,” he says. “We bring ourselves personally to the job.” During one evening of dancing Warner and his son, the only males present, never sat down. Warner’s father, a retired minister, also comes in weekly to “discuss whatever is on peoples’ minds.” Every Wednesday, however, is hair-styling day: other women come over from Fox Hill and everyone joins in the buzzing beauty salon.
The nurses do not wear uniforms and also do chores—such as vacuuming, dusting, and folding laundry: these familiar sounds and sights can comfort persons with dementia. During a reporter’s visit, the staff seemed freer to be more responsive, doing things like making meatballs with a resident who claims her recipe “is the best,” playing catch with a ball, and writing down the name and address of the cottage for someone else who asks, “Don’t I need something to tell me where I am?”
This Green House approach lessens the need for psychopharmacological intervention, Warner asserts. “We have intimate knowledge of who people are and what they are experiencing: we try to meet their needs preemptively,” he explains. “That minimizes manifestations of undesirable behavior.” Nevertheless, he is not opposed to the use of an anti-anxiety drug, for example, “if it will help them have a better quality of life and they really cannot shake their anxiety. It’s one tool. But by no means do we want a bunch of zombies walking around here.”
Warner finds that referencing whatever residents do retain about their identities, and giving credence to the truth of their concerns, goes a long way toward soothing agitation. “Many people here think they are at their summer homes,” he says. “You don’t want to force your ‘reality’ on them. It can be detrimental.” Why cause unnecessary anxiety and anger—especially in those whose short-term memories are broken and are near the end of lives? “Ultimately, if you have caring people around you and you’re relaxed and trusting and having fun,” Warner adds, “who cares where you think you are?”
Unfortunately, most people do not understand how dementia works or cannot cope with patients’ redundant questions, seemingly nonsensical perceptions, and constantly expressed need to find a foothold in an external world that is bewildering. “Often patients’ social skills are still present; they are polite and even charming,” Debby Rosenkrantz explains. “They say things like ‘Isn’t it nice you came for a visit at Christmas?’ when it isn’t Christmas. Or ‘This is a fine day’ when there’s a snowstorm outside.” These interactions can be experienced as awkward or disturbing by old friends, thus visits tend to dwindle over time.
Barbara Rosenkrantz still has strong relationships to her daughters and their families. She visits their homes, eats out at restaurants, and is taken to her summer house on Cape Cod, a comforting place to be, every few months. Concrete, short activities often work best for her, Debby Rosenkrantz says. Wash or cut vegetables. Eat a meal. Take a walk outside. Look at the newspaper. Work in the garden. Listen to music. Make a collage or paint a picture. These may seem like childish things, “but they bring positive feelings to every moment,” she maintains. “You have to direct the capacity the person has—and be willing to improvise and leave your ego at the door. Good luck if you try to force it to be some other way. For me, it is about accepting my mother—for whoever she is when I see her.”