A culture shift is needed in how we view dementia
“Culture change will always be at the heart of high quality care for people living with dementia.” – Dr. Al Power, geriatrician and author.
The term “dementia” conjures up a variety of images, usually associated with a pre-conceived notion or some cultural stereotype. There are more than 100 types of dementia, and as we move through Alzheimer’s month, it would be well to examine our views, and more pointedly, how we should approach dementia care.
“This is a civil rights issue,” said Dr. Power in a recent interview. “We are saying there is a group of people who can’t live around anyone else because they are different. We’ve been down that road, and we know that putting physical attributes before them as people not only is discriminatory, but it also stereotypes those individuals.”
Dr. Power and others, including United Active Living, are spearheading a culture shift in how we support people with dementia and other cognitive impairments.
All too often segregation and medication are the preferred options.
“It doesn’t have to be like that,” said Gail Hinchliffe, president of United Active Living. “When someone decides they want to move into one of our communities, we focus more on improving their lives through socialization, community, friendships and integration into the everyday activities here. Medication to control behaviour and isolation aren’t even considerations. While many may talk about this approach, United’s communities are actively using this approach and getting some very positive results.”
Residents with dementia live on the same floors as everyone else; they eat in the same spaces and attend the same programs. This is done intentionally so that everyone has the same opportunities to engage in all aspects of our community.
Researchers have found that segregated communities with a dedicated floor or ward for people with dementia often prioritize nutrition, security and physical care over people’s social, emotional and environmental needs. This can lead to monotony of routines organized for the convenience of staff, stark and clinical environments and limited opportunities to engage socially or partake in meaningful activities. As a result, there is a stigma associated with those living in dementia units that further isolates them from the community.
“There are things that we do that diminish the worth of the person,” Dr. Power said recently in a presentation in Australia. “We take people whose view of the world is changing and fit them into programs based on our needs and our schedules. We expect them to fit and when they don’t fit, we medicate them.”
As a family member of a resident in United Active Living’s United Minds program recently stated, “She says many times how safe she feels; how happy she is.”
“We focus on a social model rather than a medical model,” said Gail. “What this means is that we determine a person’s interests, then a cognitive enhancement program is developed.”
Here’s a typical example.
Emily has a difficult time remembering how to get to the dining room or to the theatre for programs from her suite. After discussing her challenges with the United Minds coordinator, Emily is able to go to the music programs and enjoy the friends she is making through the more intimate programs designed to facilitate community and connection. When it’s lunchtime, United Minds staff help her decide what she wants to eat and how it’s best served. The same staff escort her to her suite for a rest and are back later that afternoon to take her to a another program in the theatre.
Another family member of a resident said recently: “We can’t believe the change in mum. It’s amazing. I haven’t seen her this happy in years.”
“Everyone has a strength even when other aspects are failing,” said Gail. “There is still a lot of life to live. We find out what still connects them and anchors them and then we work on that. It doesn’t take much to find out what their passion is and then we focus on how we continue to support that passion and those strengths.
“When you get to a certain stage in life every day you are faced with perhaps a reality of another decline, so the power of being able to learn something new, to be able to express yourself in a new way is just so powerful. It’s not so much how long I’m going to live, but how well I’m going to live,” said Gail.
Check out this blog article on resources that can help you make the right choices for your family. The programs are sorted by topic. For example, when should you consider moving to an older adult community, and United’s exploration of the arts to help keep the brain and mind sharp. There’s a lot of information there, as well as links to videos and our YouTube channel and to website pages where United’s philosophy is described in depth. Plus, check out our other blog articles to learn more about the benefits of being a resident at a United Active Living community.
Do you know a friend or family member who could benefit from living in a United community? Send them a link to our website or blog, or arrange a tour. We are happy to help!