Here’s a quote from an article I enjoyed today with my morning tea:
Facing a growing wave of dementia so violent it’s led to 12 homicides in two years, Ontario (Canada) nursing homes are pleading with the province to pay for a key tool now available to fewer than one per cent of them.
Just six of 626 long-term care homes have been given funding to bring in a team of experts to find ways to reduce violence so prevalent it’s led to warning from Ontario Provincial Police, the chief coroner’s office, the homes themselves and families who fear their loved ones in homes will be the next victims.
First, a bit of background.
In Ontario, we have retirement communities meant for seniors who are independent. These can range from apartment buildings for seniors where little-to-no support is provided, to expensive, private retirement homes that are staffed with administrators, activity directors, occasional or full-time caregivers, and medical staff, and which provide housekeeping, meals, activities, and outings. Some retirement homes are non-profit; most are profit-driven, meaning that they allow their bottom line to dictate their decisions. Sold like resorts for the elderly who prefer not to live alone, in reality they are more like assisted living communities without, you know, assistance. Assisted living takes place within retirement communities, although some communities will have separate floors or buildings for those who require additional medical care or assistance with activities of daily living and cannot live independently. Some communities are completely focused on assisted living and will also include special memory care, so as to avoid this population from entering long-term care too early. Long-term care, meant for those who can no longer live independently and who require medical support that may not be feasible at home, is publicly funded by the provincial government, and fees are adjusted to income.
As an underlying issue, Ontario’s universal healthcare system is a bit of an (under-funded) mess.
The other underlying issue is, of course, the increasing number of people with dementia. Currently 750,000 Canadians live with dementia, a population expected to rise to 1.4 million by 2031 (only 15 years from now, if you’re keeping track).
So, generally speaking (and from my observations), it goes something like this:
The adult children notice that their mom or dad is showing signs of dementia and is having trouble living independently in the family home. Because they live some miles away, or perhaps even the other side of the country, the children are concerned for their parent’s well-being and suggest — or insist — that the parent (or both parents) move into a retirement community rather than live alone. Home care is difficult to cobble together, especially from a distance, is not 24/7, and is expensive. Because the symptoms are mild(ish) and because their mom or dad can still get dressed in the morning but needs help with meals and household maintenance, a retirement community seems most appropriate. While some companies offer memory care within assisted living communities, such a service is a) not available in their community or b) is too expensive or c) has a waiting list. So, into the retirement home goes mom, grouped in with active seniors who expected to be living in a resort community, not memory care. With little to no support from staff trained in dementia care (such as it is) — surrounded by residents who fear dementia for themselves, buy into the stigma of dementia 100%, and have received no education about dementia — rather than a marriage made in heaven, it’s a recipe for disaster. Basically, retirement communities in Ontario are turning into homes where desperate and worried children send parents with dementia for support. With empty apartments and profit goals to attain, these retirement homes take people with dementia, even though they are ill-prepared to serve this population.
Retirement home residents with dementia and people with dementia still living at home eventually run into the need for more care, prompted by an accident, an illness, or an act of frustration leading to a violent outburst against fellow retirement home residents that resulted in some sort of action needing to be taken. They end up in Emergency at the hospital, then, as there is a waiting list for long-term care, at the hospital for extended periods of time. Or families must cobble together care at home as best they can while the person with dementia is assessed and put onto the waiting list. Families are presented with a short list of long-term care residences that have availability and must make a decision about which home to send “mom” or be sent back to the bottom of the list if they opt not to take the placement. Often the choices are not great, and often you do not get the home you were hoping for. Or you must make difficult decisions such as “well, this one is closer to my home but….” As the government document about wait times for long-term care states: “The more urgent your need, the more choices you will be asked to make.” In my area, the wait time to get into “basic accommodation” in long-term care ranges from four months to four years.
And as the above article noted, training is lacking. At the same time, long-term care homes are under pressure to reduce the use of chemical restraints, and rightly so. But training in the alternatives to drugs is almost non-existent. And so we end up with headlines such as the one that greeted us this morning.
Basically we have upward pressure from families, who upload their loved ones into retirement communities ill-prepared to serve people with dementia, who then upload these residents into hospitals, assisted living, and long-term care facilities equally ill-prepared to serve this population, and which can no longer drug them, don’t have the resources to properly train their staff, can’t afford to hire more staff, and have nowhere else to upload.
These issues exist in Canada’s other provinces as well. And this in a country with no national dementia strategy. Ontario is at least working on its own dementia strategy.
There are notable exceptions. For example, in its 13 villages in southern Ontario, Schlegel Villages has “developed unique expertise in caring for this unique population of seniors through education programs developed by the Schlegel-UW Research Institute on Aging and MAREP (Murray Alzheimer Research Education Program).” (http://schlegelvillages.com/living-choices) Mindset Centre for Living with Dementia is proud to be collaborating with Schlegel and To Whom I May Concern™ to create a facilitator training program that will bring TWIMC performances by people with dementia to their retirement communities, to educate staff and residents about the lived experience of dementia in a unique, entertaining, and empowering format.
Training for staff on alternatives to chemical restraints is absolutely essential if reduction in drug use is to be achieved without endangering residents. This training must take place quickly; to do otherwise is irresponsible.
Likewise, staff in retirement communities must be provided with the same training in strategies to manage “challenging behaviours” by better understanding the lived experience of dementia. Residents in these retirement communities must also be provided with training on understanding what it’s like to have dementia, thereby debunking the stigma and fear-mongering, and empowering them to support their fellow residents with dementia. Doing so would take some pressure off of staff and provide a better living environment for residents with dementia, and perhaps even relieve some of the upward pressure on the system by enabling residents in the early stages of dementia to remain in retirement communities longer. Essentially, retirement communities must become dementia-friendly.
And of course, much more work must be done to allow people with dementia to remain safely in their homes without becoming isolated and withdrawn. Indeed, creating dementia-friendly communities may be the solution that would create the most impact by enabling people to stay in their homes and communities longer.
It’s a tall order, of course, but let’s try and make sure that next year we don’t read the same headline or worse.