How Different Countries Infuse Dignity into Dementia Care
By the year 2050, 277 million aging adults are expected to be dependent on others for personal care. Of those 277 million, approximately half will be struggling with symptoms of dementia, according to the newly released World Alzheimer's Report 2013.
"All governments should make dementia a priority," according to the authors of the report, which calls upon policymakers across the globe to "transform their system of priorities" and infuse dementia research and support efforts with a tenfold increase in funding.
These statements echo the pleas made over the years by countless individuals and advocacy groups; a universal cry to address the threat of the "silver tsunami" that looms ever larger in the world's rearview mirror.
The report itself highlights many current caregiving issues that advocates warn will only become more concerning as time goes on. Why are family caregivers so undervalued? What factors force people to place their loved one in a long-term care facility? How can we preserve the quality of life of individuals with dementia and their caregivers?
Progress is being made to address each of these problems, with different countries adopting different strategies to find a solution to the dementia care crisis.
The United States joins eleven other countries (Norway, Australia, Netherlands, Scotland, Denmark, Finland, England, Wales, France, Republic of Korea and Northern Ireland) in releasing a formal plan to address Alzheimer's and other dementias in their respective domains.
Improving support (both financial and emotional) for those affected by dementia, enhancing the quality of care provided by long-term care facilities and reducing the overall costs associated with dementia top the lists of priorities in these plans.
The global community appears to agree on the overall goals of dementia care, but a surprising number of differences in execution occur, depending on geography and cultural practices.
"Different places are going to have different variations in care," says Cathy Greenblatt, PhD, author of Love, Loss and Laughter: Seeing Alzheimer's Differently. "But the same things that are important in Florida are important in Bangalore."
After watching her grandparents (both of whom had dementia) receive little more than maintenance care in a local facility, Greenblatt acquired a dim view of dementia care. "The people working with my grandparents had bought in to the idea that they were ‘gone.' I grew up with no evidence that any kind of care could make a meaningful difference."
After retiring from her professorial post at Rutgers University, Greenblatt—inspired by her childhood experiences with her grandparents and a budding passion for photography—crisscrossed the globe in search of examples of high quality dementia care.
Despite the cultural disparities and ideological differences of the regions Greenblatt visited there was one central theme that united them all. No matter which country she found herself in—India, Japan, France, or the Dominican Republic—Greenblatt discovered that the best dementia care practices were the ones that focused on respecting an elder who has dementia and celebrating their ongoing humanity.
"The things that make a difference are the things that are universal—treating people with dignity, being in the moment."
Here are just a few examples of the ways different countries are infusing dignity into dementia care:
- India: Money is always a significant factor when caring for someone with dementia, no matter what side of the Equator they live on. Having fewer finances often amplifies the burden of dementia on a person and their family. But low-income elders in Cochin, India receive special treatment, thanks to a group of professional staff and volunteers from the Alzheimer's and Related Disorders Society of India (ARDSI). While traveling around India, Greenblatt visited the home of a woman with advanced dementia whose bed consisted of little more than a wooden frame with a piece of cardboard over it. Still the woman was able to receive a treatment plan and regular in-home visits from ARDSI caregivers and social workers.
- France: Greenblatt describes the remarkable transformation of a dementia-stricken Frenchman named Marcel. In a special Snoezelen room at the Villa Helios in Nice, France, Marcel, whose condition was causing him to act angry and violent, was changed into a gentler, more caring soul. Snoezelen rooms are used to calm those with cognitive disorders, such as autism and dementia. They contain an array of different sensory stimuli, including water beds, soothing scents, soft lighting, and even big water tubes with bubbles piped into them.
- The Netherlands: Just beyond the outskirts of Amsterdam lies Hogewey, a quaint village occupied by just over a hundred people. The town has a theatre, a grocery store, a beauty salon, restaurants and cafes. What makes Hogewey different from the traditional European hamlet is the fact that nearly half of its inhabitants have moderate or severe dementia. The remaining "residents" are in fact specially-trained caregivers who pose as beauticians and restaurant staff, all the while making sure those with cognitive impairment remain safe and calm. The so-called "dementia village" is actually an innovative care facility designed to make those suffering from memory loss feel as though they are living regular lives and remain engaged with their environment. Residents' rooms are decorated based on their hobbies and interests, food preparation and service are tailored towards individual preferences and there are always staff members available to provide hands-on care for those who need it. Other caregivers surreptitiously keep an eye on the residents as they go out shopping or to the salon, always ready to step in and make sure no one endangers themselves. The village's single exit is manned by a staffer who tells any approaching resident that the door is either broken or barred and offers an alternative path. This prevents residents from wandering away and becoming lost—an especially common concern for those with profound dementia.
- The United Kingdom: The Pan-London Dementia Action Alliance recently announced a formal push to make London the world's first dementia-friendly capital city. Unlike Hogewey—a self-contained village created specifically for those with dementia—London aims to integrate the cognitively-impaired into its pre-existing metropolis more effectively. This will involve the coordination of countless smaller initiatives, such as making landmarks more accessible and instructing fire fighters, policemen and bus drivers how to identify and communicate with the dementia-stricken.
Across the globe, person-centered dementia care is rapidly replacing the outdated paradigms that relegated the cognitively impaired to wheelchairs in locked wards. Society is finally beginning to understand why we fear Alzheimer's and other dementias, and what can be done to dispel the stigma associated with these conditions.
Greenblatt is cheered by these shifting tides because that means fewer and fewer people with dementia will be treated like her grandparents were. "It's a tragic disease and you've no control over the cards you're dealt. But you do have control over how you play the hand. There are ways to make the situation livable for everyone involved."