Decreasing segregation and isolation in long-term care can increase quality of life

Caring for people living with advanced stages of dementia often involves some kind of segregated living situation. Traditional care homes often put residents living with dementia in designated memory-care wings, locked away from the rest of the facility’s population.

The idea is that, if left to roam, residents living with dementia may become confused, go missing, or cause harm to themselves or others. But a growing number of experts are arguing that the real harm comes from restricting these residents’ movement. The concept of “unlocking doors,” that is, allowing people living with dementia some level of personal freedom, may actually improve their quality of life.

When experts talk about unlocking doors, they don’t usually mean allowing care home residents to walk out the front door and come and go as they please. Rather, advocates for resident freedom are looking at measures as simple as desegregating memory-care residents or creating fenced-in outdoor areas that residents can access any time.

“There are a lot of reasons why I don’t think it makes sense to have separate living areas for people with dementia,” says Dr. Al Power, Schlegel chair in Aging and Dementia Innovation at the University of Waterloo Research Institute for Aging. “The biggest one is a civil rights issue. By segregating them, we’re essentially saying that this population can’t live around the rest of us anymore.”

Kate Swaffer, chair and CEO of Dementia Alliance International, a U.S.-based charity that represents the global voice of dementia, is deeply committed to deinstitutionalisation and desegregation of people with dementia. Swaffer, who is living with dementia, also believes dementia villages are simply another form of segregation, and are little better than a “ghettoization of people with dementia,” rather than a solution to assisted living.

Power, who has long been an advocate of shifting the culture of dementia care to focus on the person rather than the disease, says the idea of segregating residents with dementia has only been around since the ’70s. Part of the reason this became popular was that care homes realized the power of marketing specialized memory-care wards. He says that not only is there no clinical evidence that segregation is better for people living with dementia, but there’s actually plenty of evidence that suggests it can be detrimental to a person’s mental well-being. Locked doors can create a sense of imprisonment, as well as feelings of anxiety and distress. Plus, mingling with residents without dementia can help keep one’s cognitive abilities sharp.

“When it comes to locking doors, people focus on physical safety, which is a real concern,” Power says. “But security can also be about psychological or emotional security. Being in a locked-in, confined space decreases that sense of psychological or emotional security.”

Power says that removing the doors between memory-care wings and the rest of a care home is a good first step. While separate memory-care areas tend to be the global trend in the industrialized world, some communities, like United Active Living in Calgary, are already giving all residents full access to the entire property, and United’s community at Fish Creek offers an enclosed outdoor space. Power has seen other facilities in the U.S. and Europe that also allow full access to enclosed outdoor spaces. He thinks it’s possible for facilities to eventually consider unlocking their front doors as well, employing staff to accompany residents as they go for a walk, or using GPS technology to keep them safe. As with all dementia care, Power would like to see each patient’s needs addressed on an individual basis.

Ultimately, unlocking doors is about treating people living with dementia with dignity. [ ]