Malcolm Young, AC/DCs guitarist, is suffering from a form of dementia? That news was shocking, especially given that Young is only 61. Boomers who have been caring for suffering parents have been bracing themselves for a tidal wave of new cases of dementia but surely it cant have begun already? Have the floodgates opened?
Dementia: The Straight Dope
Three years ago, there were 747,000 Canadians living with cognitive impairment and dementia. If nothing changes, there will be 1.4 million sufferers by 2031. The cost of dementia in Canada is currently pegged at about $33 billion dollars a year when you factor in the direct (medical) and indirect (lost earnings) costs. If the status quo holds as the population continues to age, we will be spending $293 million dollars a year on dementia 25 years from now.
It is the same and in some cases worse in all developed countries. In recognition of these staggering figures, G8 countries held their first Dementia Summit last December. They declared dementia a huge public health priority: We recognize that dementia is not a normal part of aging. We also acknowledge that dementia affects more than 35 million people worldwide, a number that is expected to double almost every twenty years
Global dementia currently costs $604 billion, yet 60% of sufferers live in low to middle-income countries. As life expectancy increases everywhere, economic challenges will intensify. The summit produced an acknowledgement of the urgent need to prevent dementia and develop strategies to provide better care. The attending countries agreed to collaborate on a series of research initiatives and to share best practices. Certainly, Canada could learn a thing or two from some of the other countries in attendance.
Dementia: The Bad and the Ugly
It is an unpleasant yet sobering reality: one in three of us will end our lives suffering from dementia. In fighting this terrifying disease, foresight and empathy go a long way, yet they are often conspicuous by their absence from caring strategies. Maybe we are too terrified to try and visualize what it might be like to be adrift without moorings, to lose our identity and ourselves a little bit more each day.
And yet, identifying with sufferers and calling on every bit of innovation and heart that we can muster is what we must do. The consequences of failing in this venture are harrowing. In a past issue we told you about Douglas and Pamela Allen from Victoria, B.C. The couple has been involuntarily committed to a hospital under the Mental Health Act.
They lived at home and cared for one another until they were recently diagnosed with dementia. The doctors expressed concern that they were not capable of staying in the independent home for seniors where they had recently purchased a suite. The older couple disagrees: both say they are fully capable of caring for themselves. With the help of a lawyer, they are suing for freedom. In a recorded video statement, they make a heartbreaking appeal: I want to go to my home, says Pamela, They wont let us go home and we haven’t done anything.
The Allens’ laywer says his clients have not been allowed outside since the hospital started holding them against their will. The video clearly shows Pamela’s wheelchair is tied in place and that Douglas in confined to the bed by a restraining vest. It is a horrible and shameful setup. There must be a better way.
Obviously, it is important for seniors and their families to make plans for the possibility of the onset of dementia. But there must also be community support that allows people to stay in their homes as long as possible if that is their wish. It has been said before but it bears repeating: there are cost-saving measures that also provide better care outcomes, but we are not capitalizing on these opportunities.
Canada has no caregiver strategy, no national home-care strategy (despite the fact that it has been identified as a priority area, the next essential service for over a decade) and no dementia strategy.
Whats worse is that we still rely on the acute care system to deal with seniors and dementia sufferers when we know that it is a hideous environment for them and that it is extremely taxing on the healthcare system.
You might also read the story of Dallas Diamond, the woman whose mother was essentially warehoused in hospital hallways and strapped into a geriatric chair for almost a year because she could not get into a public or private facility. It is an outrage. When we have dementia sufferers who cannot find a care home and who end up tied to a chair so that they don’t wander in a hospital acute care ward for an entire year while their relatives try, and fail, to find them a long-term care ward, we can honestly say the system is failing.
Some might say that these are extreme scenarios and that they are not representative of the experience most Canadians will have. Perhaps. But if we are having these issues now, how will we cope with the tidal wave of cognitively impaired seniors when it comes? These examples highlight the dire need for a paradigm shift in dementia care.
It would seem that chemical restraints are not being used as a last resort – it would seem that they are actually being used quite liberally…
Finally landing a long-term care placement does not put an end to the indignities Administering chemical sedation/chemical restraints is commonly used not just as a last resort option. A recent Star investigation of Ontario nursing homes found staggering rates of antipsychotic drug use and even off-label uses of drugs that carry serious warnings. They found that it was common for nursing homes to use drugs like olanzapine, quetiapine and at least 10 others that have NOT been approved by Health Canada for the elderly with dementia. At more than 40 homes across the province, roughly half the residents are on the drugs. At close to 300 homes, more than a third of the residents are on the drugs. Click here to read: use of antipsychotics soaring in Ontario nursing homes.
What is Needed
Dementia is a lonely, isolating experience and the stigma attached to it only deepens this seclusion. We need to change how we think of cognitive impairment it is more than a disease it is a social issue and how we treat sufferers says as much about us as it does about them. We need to focus on the person and not the disease. There is more to patient-centered care than empty rhetoric.
In fact, the whole concept of person-centered care is essential to the provision of excellent dementia care. Each one of us should ask ourselves: how would we want to be treated and most importantly how would we want our mother to be treated if she suffered from dementia? That is what the creators Hogewey did and it has worked almost magically.
The Good: A Project that Captured the World’s Heart and Imagination
Crippled by the prospect of putting their own parents into extended care facilities, two Dutch nurses decided to conduct an experiment: build a village for people with dementia and introduce a new level of humanity to the last few years of their lives. Hence was born Hogewey, a little village in the Netherlands that has captured the whole worlds heart and imagination. Since its inception, academics, doctors, specialists, policy-makers, researchers and journalists alike have been flocking to the little town colloquially dubbed dementia village to study the outcome of this amazingly successful social experiment.
The result is a cutting-edge medical village and a new world-class standard of dementia care. All of the residents have dementia. Everyone else, however, from the barber at the local salon to the chefs in the restaurants carry out their regular jobs in addition to being trained as specialized health workers.
Hogewey has found a way to give its residents a level of personal choice and freedom while preserving their safety that is unparalleled. There is a long waiting list and they accept only serious cases of dementia. They have many residents who had previously been thought of as problematic patients and who were heavily medically sedated. They were able to cease medications and reduce if not eliminate outbreaks and episodes.
The owners say that one of the most productive things you can do to help keep a person with dementia from feeling lost, frightened, or agitated is to help them live as familiar a life as possible. To that end, at Hogewey, residents live in one of seven different “lifestyle” categories: religious, cultural, urban, homemaker, trade/craft, upper class, and Indonesian. The moods evoked by the furnishing, decoration, and art in each home create an experience reminiscent of each individual’s formative years.
Residents are also scheduled for regular appointments with the village hairdresser, Ingrid Scheermeijer. She says that when the residents simply get their hair combed, it has a calming effect. They feel as if they’re being cared for and pampered. To find out more about Hogewey, read: The village where people have dementia and fun.
We need to look to these types of examples and draw inspiration from them. Other countries, like France and Japan have also amassed a set of best practices we can learn from. While Canada has yet to develop a national plan for dementia care, France is well into its third. Their latest plan, launched in 2008, shifted the emphasis from a health focus towards to a patient-centered focus. This “person-centered” approach, and the use of internal day care centres within nursing homes, dramatically reduced the prescription of anti-psychotic drugs in some cases to zero.
Dementia care mapping is yet another buzz term that is actually quite meaningful and impactful. It involves closely monitoring care from the patients’ viewpoint to see what triggers changes in their behaviour what makes them happy, aggressive or sad.
Patient profiles containing a brief life history can aid the mapping for example, if someone keeps shouting at others to sit down it helps to know that he or she was once a teacher. Armed with all the information, care workers can tailor their treatment to suit patients’ individual preferences, thus reducing their stress and agitation, and consequently their reliance on drugs.
Of Japan’s citizens, one in four is over 65 (compared to one in six in the UK) and 4.6 million have dementia. Although its national dementia policy was only launched last year, policymakers were already concentrating on educating the public and in 2004 changed the word used for dementia, from Chiho (meaning idiocy and stupidity) to Ninchisho (cognition and disorder).
They introduced volunteer dementia “supporters” in 2005, an idea taken up by our coalition government last year in the guise of “dementia friends”. Pivotal to the Japanese system is a “care navigator”, responsible for co-ordinating integrated health and social care.
On a more microcosmic scale we can also look to the example of Geel, in Belgium. As legend would have it, a 7th century Irish princess named Dimpna who fled the advances of her father landed across the ocean in Belgium. The tale turns dark her father follows her and murders her in the town of Geel. Dimpna was canonized and became the patron saint of the mentally ill. Geel became a religious shrine where the townspeople take such pride in their founding/origin story that they have made the provision of superior care for the mentally deficient their cause celebre. You can read more about it here.
There are many things we could be doing to improve how we deliver care to those who suffer from conditions like dementia. People can and do draw our inspiration from community, religion, mythology, art and music, international best practices or love of family, but at the heart of the issue the principle is always the same: try to see the person, not the disease.
Henry Simmons of Alzheimers Scotland has said that “interaction is the chemotherapy of dementia”. How much treatment is a dementia sufferer going to get in an understaffed home while getting pumped full of antipsychotics or in a hospital hallway, tied to a gurney or a geriatric chair?