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Nursing home research conducted outside the United States has increased in recent years, and leaders of AMDA – the Society for Post-Acute and Long-Term Care Medicine are looking for ways to capitalize on what they say is an international hunger for knowledge-sharing and collaboration.
The Nursing Home Research International Working Group — a small, informal group established by the International Association of Gerontology and Geriatrics (IAGG) and fueled by partnership with John E. Morley, MB, BCh, and other Society leaders — held its fourth international meeting last October, bringing together researchers from 19 countries to discuss a range of topics, from pain management and physical activity to cognitive stimulation therapy for dementia and end-of-life care.
“There are cultural differences in how we pay for post-acute and long-term care and what we think are appropriate interventions, but there are more similarities than differences, and there is so much we can learn from each other,” said Heidi K. White, MD, CMD, associate professor of internal medicine at Duke University Medical Center and president of the Society.
“We can learn from other countries as much as they can learn from us,” Dr. White emphasized. “If you see something different, your imagination can take you to new places.”
Cary Levy, MD, PhD, CMD, associate professor in the division of health care policy and research at the University of Colorado and vice president of the Society, said she was “blown away by the quality of work” presented at the October meeting, held in St. Louis. “There are all these young smart researchers [in physical therapy, occupational therapy, and nutrition, for instance] who are excited about nursing home research,” she said.
But while researchers abroad increasingly have had their work published in JAMDA – The Journal of Post-Acute and Long-Term Care Medicine, the Society’s official journal, “they don’t really have a [broader] professional home that is focused on the nursing home population,” Dr. Levy said.
She and Dr. White are among the Society leaders who are discussing ways to sustain and build on the efforts of the international working group, and to engage international researchers in “the [Society] family.”
Links to Education, Reputation
Rapid increases in aging populations and lifestyle changes mean that nursing homes are “now a universal requirement,” said Dr. Morley, division chief of geriatric medicine in the Department of Internal Medicine at Saint Louis University School of Medicine.
“With the exception perhaps of Africa and India, the world has recognized there is a need for the [nursing home] model. We’re all looking at the same things — to try to provide high-quality care with reasonable activities and adequate medical care for people who are having trouble with function,” Dr. Morley said. As JAMDA’s editor in chief over the past decade, he saw international submissions increase from 20% of total submissions to 80%.
“Research has gone from being not very good anywhere in the world, to being fair, then good, then equally good whether it comes from the U.S. or the rest of the world,” he said. “We’re reaching the tipping point where we all can work together on nursing home research and improving care, or each continent will go its own way.”
In 2010, in Toulouse, France, then-president of the IAGG Bruno Vellas, MD, PhD, saw the need to focus on nursing homes internationally — to better understand the needs of nursing homes, to share lessons learned, and to set priorities for nursing home research. Dr. Vellas asked Dr. Morley and his colleague Yves Rolland, MD, PhD, professor of geriatrics in the University of Toulouse, to chair a nursing home task force.
Their first effort — a workshop and the resulting position paper, “Global Agenda for Clinical Research and Quality of Care in Nursing Homes,” endorsed by the World Health Organization — placed research in a broad context, linking the development of research priorities to the goals of practitioner education, improved leadership capacity and capability, and reputational enhancement.
A driving concept, the authors say, was the need to improve confidence in the care provided in nursing homes and to improve the status and valuing of nursing home practitioners and their knowledge and skills (J Am Med Dir Assoc 2011;12:184–189).
Two subsequent surveys laid some groundwork for a research strategy. The first of these surveys — an exploratory survey of all IAGG member societies and the IAGG’s Global Aging Research Network — focused on models of care. It found that most of the 30 participating countries employ a nurse-led model or social model for nursing homes (in the latter, registered nurses may be involved but have no administrative responsibilities). Regular physician visits occurred in just over a third of the countries surveyed, and only five countries had physicians regularly involved in medical direction. All but two countries used advanced practice nurses to some extent.
This survey also found that resource-constrained environments were common. Government was considered the primary payer in 63% of the countries, out-of-pocket in 40%, insurance in 17%, and charity in 13%. For about one quarter of countries, multiple primary payer sources were reported (J Am Med Dir Assoc 2013:14;459–462).
The second survey homed in on research priorities, with international nursing home experts from eight countries (Australia, Canada, the People’s Republic of China, the United States, and four countries in Europe) identifying two areas — the care of individuals with cognitive impairment/dementia, including the management of behavioral and psychological symptoms, and palliative and end-of-life care — as “the most important areas for research” (J Am Med Dir Assoc 2014;15:309–312).
In the meantime, the IAGG task force organized small conferences on nursing home practice in locations such as Chengdu, People’s Republic of China, and developed a curriculum to support the development of nursing home practice. And in 2013, the Nursing Home Research International Working Group, as the task force became known, drew several dozen researchers together at its first nursing home research conference in St. Louis, MO. Two years later, a second conference held in Toulouse, France, was attended by about 10 times as many researchers and participants.
Dr. Morley credits multiple leaders of the Society and the Foundation for Post-Acute and Long-Term Care Medicine, including Paul Katz, MD, CMD, immediate past chair of the foundation, and Daniel Swagerty Jr., MD, MPH, CMD, also a past chair, with leading the development of international ties and “increasing the viability of international research.”
In addition, Deborah Tolson, PhD, MSc, BSc, RGN, of Glasgow Caledonian University in Glasgow, United Kingdom, led incorporation of the nursing perspective into the surveys and other work of the task force, “making [the efforts] much more interprofessional,” Dr. Morley said.
“Many of the issues facing nursing homes really transcend cultural differences,” said Dr. Levy, who has attended three of the four international nursing home research conferences. “Even in cultures where people are highly respected as they age, it’s hard to find people to work for nursing homes. And it’s expensive and hard to pay for … Governments are all struggling with how to provide and finance high-quality, humane care.”
The intersection of long-term care and palliative care is among the clinical topics of mutual relevance, Dr. Levy said. “Everyone is trying to figure out how to [provide palliative care],” she said. “All 19 nations [participating in the international conference last year] are struggling with this, and everyone agrees that nursing homes are finding their way.”
A recent survey of 18 long-term care experts across 15 countries — the IAGG’s most recent international survey — found widespread agreement that hospice and palliative care should be available in long-term care facilities and that both are defined by holistic interdisciplinary approaches using measures of comfort.
However, 10 of the 15 countries surveyed reported that their nursing home residents with advanced illness do not have access to palliative care. Other survey results show “great variation of [palliative care and hospice] services” in nursing homes across any given country. And, notably, there was lower reported use of emotional and spiritual support (20% to 53% of countries surveyed) compared with use of antipsychotics (73%), the study authors reported (J Am Med Dir Assoc 2017;18:465–469).
The Society’s leaders point to Singapore as a nation that is transforming its approach to long-term care and death and dying, and consequently has experiences to share. Various projects funded by the Lien Foundation — a Singapore philanthropic organization that has elder care as one of its three pillars of work — have been aimed at improving the quality of death there and worldwide (www.lienfoundation.org).
“Death remains taboo to many in Singapore,” and awareness of hospice and palliative care is low among older Chinese Singaporeans, said Christopher Lien, MD, director of community geriatrics at Changi General Hospital and a governor of his family’s foundation. “We [aim to] demystify death … and demedicalize daunting end-of-life conversations.”
In the “Happy Coffins” project, for instance, elders in a local hospice program teamed up with young artists to turn coffins into decorated works of art reflecting the elder’s inspirations and reflections. Transitioning a coffin into a celebration of life and hope creates a platform to “chronicle what matters” and to talk about pre-death wishes, Dr. Lien told Caring.
Similarly, a separate grassroots campaign using “simple tools and conversation touch points” encourages older Chinese Singaporeans to “discuss and reflect upon their death — but more importantly, their values and their lives,” he said. And the “Life Before Death” documentary film series, sponsored in part by the Foundation, examines pain at the end of life and advocates for the right to die pain-free and in peace (www.lifebeforedeath.com).
The Lien Collaborative for Palliative Care, co-developed by the Lien Foundation and the Asia-Pacific Hospice Palliative Care Network, now aims to draw together educational institutions, hospitals, palliative care providers, and others in efforts to strengthen palliative care leadership and capacity and inform policy making (http://aphn.org/lien-collaborative-for-palliative-care).
“When I first started in academic medicine in the 1990s, there wasn’t very much [collaboration] going on in the nursing home. It’s very encouraging to see this changing.”
At the 2017 nursing home research meeting in St. Louis, Dr. Lien discussed the Foundation’s work on palliative care as well as two other initiatives: the Gym Tonic project to implement strength-building exercise protocols and benchmarks for 2,000 still-independent seniors who are frail and have a high risk of falls, and the “Forget Us Not” campaign to raise awareness of the growing number of people with dementia and the ways that communities can support them.
In turn, Dr. Lien said, he and colleagues took back to Singapore “learning points regarding the robust systems in place in the U.S. and many technical ideas on [nursing home] assessment, interprofessional capacity-building and future models” for long-term care. “Within our own countries we look at local solutions to local problems,” he said. “It was apparent at the meeting that the differing approaches in other countries offer fresh ways to look at old problems.”
Discussions in Singapore about the need for models that give residents more dignity and control over their lives have been picking up, he noted, including whether the government should begin providing single and twin rooms in its subsidized nursing homes rather than the hospital-like, ward-style accommodations that have long been the norm. (There are still homes that house 25 to 30 residents in one long room, according to a 2016 Lien Foundation report “Safe but Soulless.”)
By all accounts, the Netherlands has led the world in nursing home research, largely with its “Living Lab,” an academic-practice collaborative in the southern part of the country consisting of two universities and five large long-term care organizations. Nursing home administrators and clinical and nursing staff collaborate with university researchers and teaching staff in ways that embed research projects — on topics such as malnutrition, pressure ulcers, falls, heart failure, and processes of care — into everyday practice and facilitate the implementation of findings and innovations after the projects’ conclusion.
Of note, nursing home medicine is a specialty in the Netherlands. Physicians and other clinicians are employed by the nursing homes themselves to provide care through multidisciplinary teams.
Outside the Living Lab, at Maastricht University researchers have been studying the effects of green care farms that provide 24-hour nursing home care for people with dementia. The researchers developed an observational tool to measure the daily lives of nursing home residents with dementia, and with this tool they found that residents of the farm model were significantly more physically active, spent more time outdoors, and had more social interaction than residents of traditional Dutch nursing homes.
Activities at the green care farms are “not especially organized,” noted lead investigator Bram de Boer in his dissertation report on the study, “but [they] are continuously present and fit within normal life.” The study was published recently in JAMDA (J Am Med Dir Assoc 2017;18:40–46).
The study of green care farms, said Dr. White, exemplifies the research that unleashes her imagination. She told Caring she wonders how successful elements of green care farms — “the impact of daily involvement and chores on improving physical and cognitive well-being” — can be incorporated into other settings to help keep people with dementia “strong and healthy and engaged in life.”
Jos M.S.A. Schols, professor of old age medicine at Maastricht University, told Caring that nursing home research on both clinical and administrative/environmental topics “can bring innovation and lead to better quality of care.” Dr. Rolland, who has chaired the working group with Dr. Morley and is renowned for his work on dementia and frailty, similarly emphasized that “improving care and doing research can go hand in hand.”
Nursing home research contributes to quality of care, Dr. Rolland said, by improving ongoing staff training and encouraging new strategies of care, and by helping to change negative cultural and societal perceptions of nursing homes.
The challenges to nursing home research are numerous. Investigators face high dropout rates, a lack of funding, a host of traditional exclusionary factors (e.g., dementia), confounding factors relating to both the residents themselves and to nursing home structure, and the overarching dilemma that nonpharmacologic interventions do not match well with the usual design of double-blind, randomized, placebo-controlled studies.
This makes international collaboration all the more important, the Society’s leaders said. “When I first started in academic medicine in the 1990s, there wasn’t very much going on in the nursing home,” Dr. White said. “It’s very encouraging to see this changing.”
Conversations among the Society’s leaders about how to better integrate international nursing home research and provide a professional home to international researchers are “just beginning,” she and Dr. Levy told Caring.
“We need to find ways to support it ... We’re looking for ways to continue Dr. Morley’s work, to think through the positives and how we can benefit from the associations made,” Dr. White said. “Not everyone in [the Society] wants to go to [research] lectures, and that’s OK, but there’s something for all of us to get out of having these opportunities for collaboration.”
As Dr. Levy sees it, the Society offers a natural fit for researchers around the world who are excited about their work in nursing homes and eager to share their ideas and findings. “We welcome them with open arms,” she said. “It seems like a match made in heaven.”
Christine Kilgore is a freelance writer based in Falls Church, VA.