This story is part of Governing's annual International issue.
In his working life, Francisco ran a bakery out of his home in Peñalolén, a suburb of Santiago, Chile. Now in his 80s, he closed up shop years ago, and as dementia began to claim his memory and independence, he withdrew from his social life as well. His isolation grew so deep that neighbors assumed he had died or moved away.
Francisco’s re-emergence started when his daughter sought to enroll him in a dementia care pilot program called Kintun. Kintun, which is from an indigenous language, translates roughly to “searching.” In the case of the Kintun program, its organizers see the search as one for connection and awareness, but also for treatment of a problem too few recognize. Their program has connected Francisco with another dementia patient who used to buy bread from his bakery, and it has re-engaged him with his neighbors.
That’s because Kintun is designed to help people like Francisco reconnect with the community around them. His story isn’t unique for the program. Kintun is an experiment in providing care to people with mild-to-moderate dementia. In a country that lacks a full-scale plan for the condition, Chile -- much like the U.S -- is looking for worthwhile approaches to promote on a wider scale. Kintun is special in that it combines a host of services, from diagnosis to care coordination. In addition, there is a strong social underpinning, assistance for caregiving family members and a visible presence within a high-traffic community center near city offices, soccer fields and cultural mainstays.
“In the U.S., one of the big differences is our services are very segregated,” says Laura Gitlin, a Johns Hopkins University professor of community public health who provided some consultation to Kintun’s organizers. “This is a social, integrated model that provides complementary services. When [patients] are walking outside, they’re walking around the same courtyard where mothers with young babies are walking.”
Of course, it’s not just the U.S. and Chile that are looking for the best ways to deal with dementia. A new study in the American Academy of Neurology ranks dementia, a condition that refers to a general decline of cognitive ability (of which Alzheimer’s disease is the most common type), as the third-leading cause of death in the U.S. And the World Health Organization estimates that the number of people living with dementia worldwide will double by 2030 from the current 35.6 million and triple by 2050. On top of that, dementia is incredibly expensive, particularly in the U.S., where the current price tag of $214 billion a year in direct costs ($150 billion paid by Medicare and Medicaid) will rise to $1.2 trillion a year in today’s dollars by 2050.
That’s led the world to take notice. Last December, the G8 forum of eight industrialized nations, including the U.S., met to discuss strategies and pledged to develop a “cure or treatment” by 2025. Similar goals already appear in the national dementia plans of many countries; the U.S. first released such a plan in 2012. Experts say that plan goes a long way toward setting goals, encouraging cooperation between sectors of the medical world and making sure the U.S. is the leader in researching a cure. Where it falls short, however, is in not doing enough to educate people about dementia or provide better care for the people who have it -- exactly the kinds of things that are going on in the Chilean municipality where Francisco lives.
Kintun got its start when Chile’s National Service for the Elderly wanted to find new strategies to help people with dementia maintain independence. Marilú Budinich Villouta, a geriatrician who previously worked at the University of Chile Clinical Hospital, volunteered. She started looking for an approach that would take typical adult day-care facilities -- which often lack highly trained medical staff -- to another level, offering a full range of services. She and a few other specialists sought a city government that was willing to host the experiment and put up some administrative funding, on top of about $300,000 the group had already received from the national government. That’s what led them to Peñalolén.
Home to about 240,000 people, Peñalolén provided space in a civic center surrounded by government offices, playgrounds and soccer fields. Budinich Villouta and organizers brought on board occupational therapists, nurses, social workers, nutritionists and doctors, all of whom play a part in assessing impairment and developing care plans for new patients, who come through word of mouth or a primary physician’s referral. After a full medical assessment, the group connects patients to specialists if they need them, recommends changes to the home environment and starts bringing patients to full-day sessions, which combine activities to improve cognitive functioning, physical abilities, social interaction and community involvement. Kintun also provides classes for caregivers to teach them how to better understand dementia and how to respond to it. “We needed to recruit other services,” Budinich Villouta says. “Otherwise, we’d just be an isolated island without context to primary health services or the wider community.”
Patients attend full-day sessions which include activities to improve cognitive functioning, physical abilities, social interaction and community involvement. (Jean Gajardo Jauregui)
The goals for the project, which began enrolling patients in August, include raising awareness about dementia, helping patients maintain functionality to avoid institutionalized nursing care for as long as possible, ensuring they’re taking the appropriate medications (people with dementia are often erroneously prescribed antipsychotics), and keeping them out of hospitals.
A typical day for patients starts with transportation by car to the facility twice a week. They’ll spend the morning on activities prepared by psychologists and occupational therapists that are designed to help patients interact in basic community functions and test memory. That could mean anything from watching and discussing a film to holding conversations on nature or history. The sessions are sometimes themed to coincide with holidays or other special occasions. Last year, they marked Chile’s Independence Day with stories and the national dance. “That’s important,” says Jean Gajardo Jauregui, an occupational therapist at Kintun and one of its founders. “Here, [dancing is] something that has a really big cultural impact. That’s how we relate with each other.”
But the staff also makes sure patients get outside as much as possible, whether through exercises around the soccer field where teenagers play pick-up games, walks throughout the city, gardening, museum-hopping or going to festivals. Patients also eat together with the staff, incorporating different generations in an activity as basic as it is important to Chilean culture. The six-hour day ends in the mid-to-late afternoon, giving caretakers time to run errands, rest and tend to their own lives, which experts view as a critical component to any strategy combating dementia.
The program makes sure patients get outside as much as possible, with walking, gardening, museum-hopping and going to festivals. (Jean Gajardo Jauregui)
One caregiver, Jacky Pajuelo, used to run a catering business out of her home. But since she’s been taking an ever-greater role in caring for her mother, it’s been impossible to maintain it. Her mother started showing signs of dementia about three years ago, first with the basics, such as forgetting the locations of household items. She was one of the first patients to enroll in Kintun, and Pajuelo was one of the first caregivers to take courses on the common myths about dementia, how to respond to people struggling with it and how to make a safer home environment. “At the beginning, I didn’t know how to deal with this,” Pajuelo says. “In Kintun, they helped me manage my mom’s attitudes and reactions.”
Projects in the U.S. funded through universities or the Centers for Medicare and Medicaid Services (CMS) have also subscribed to the philosophy that caregivers need to be considered part of any treatment model. One of them is a partnership between Indiana University and the nonprofit Regenstrief Institute called the Aging Brain Care Model. The ABC Model received a $7.8 million grant from CMS to prove its early successes in dementia and depression with a population of 2,000 Medicare patients. Like Kintun, the ABC Model starts with a comprehensive assessment, but it provides more at-home, individualized care with a staff of nurses, social workers and people who coordinate a patient’s medical needs. The team includes the caregiver within the treatment plan. The group has already shown it can cut hospital and emergency room visits in half while dramatically easing symptoms in the vast majority of patients, according to Malaz Boustani, an Indiana University professor of medicine and a lead researcher with the program.
The question among some experts and advocates is when work like Boustani’s will begin to reach wider practice. Currently, the focus in the U.S. is more on research than on treating people. That has a lot to do with money. Another $100 million was added to the dementia and Alzheimer’s research budget under the two-year deal reached by Congress earlier this year, bringing total government spending on research to more than $500 million a year. That accounts for more than half of worldwide public spending on research, says George Vradenburg, the chairman and co-founder of USAgainstAlzheimer’s. With that kind of investment, the U.S. is leading the way in understanding the genetics behind dementia and the breakdown of molecular pathways that fuel it.
But that emphasis and the fragmented nature of U.S. health care means America lags behind some other developed nations in critical areas such as diagnosis. In the U.S., more than 50 percent of dementia patients go undiagnosed. But in Scotland and parts of Northern Ireland, for instance, patients with dementia are diagnosed with the condition 70 percent of the time. “That says they’re on top of their physician community, getting them to recognize this and diagnose and treat it like any other disease condition,” Vradenburg says.
Countries like Scotland also have nationwide strategies to improve post-diagnostic care. Scotland offers anyone diagnosed with dementia a minimum of one year of post-diagnostic support with a care coordinator. It’s also investing to develop long-term-care communities, to retrofit existing cities to be more dementia-friendly, and to set housing standards that improve the environment for people with dementia. “The idea of care and treatment and of caring for people where they are as opposed to focusing on the cure is critically important,” says Sarah Lock, senior vice president of policy strategy and international affairs for AARP. “Scotland is way ahead.”
In the area of public perception and promoting integration, Japan and England are leading the way. Japan literally changed the word for dementia to remove the connotation of foolishness and launched a 10-year campaign of canvassing and seminars to educate people. Some 4 million people have now attended those seminars. England is trying a similar strategy but broadening efforts to include pledges from major pharmaceutical, transportation and finance industry partners to train staff in drug stores, buses and banks on how to recognize signs of dementia and act appropriately.
People in the U.S. are taking notice, at least at the state level. In Minnesota, a coalition of nonprofits, government agencies and others has developed dementia screening toolkits for primary care doctors and is working at the hyper-local level on efforts that mirror England and Japan. Six neighborhoods in St. Paul are training businesses and putting “dementia-friendly” stickers on the windows of those who participate. One community is training its law enforcement officers, while another is focusing on training clergy. “The federal government is meeting its charge of issuing recommendations where it really has authority to issue them: guidelines,” says Olivia Mastry, director of Minnesota’s ACT on Alzheimer’s. “States are going to really be able to make a difference. There really is a difference between recommendations and on-the-ground tools for implementing those recommendations.”
Kintun also subscribes to a grassroots philosophy. Organizers educate local government workers, hold presentations and take advantage of media appearances, but their strategy for improving public awareness starts with the patients that spend two days a week in their company. “We look at the people with dementia, and we think we can make visible the invisible,” Budinich Villouta says. “It starts with them, with strategies to improve their quality of life and their integration into the community.”