As our population ages and more of us see friends and family diagnosed with dementia, many of us are adjusting our perception of what it means to live with dementia and how to positively include people with dementia in our communities.
This past June, Dementia Network Calgary, a multi-stakeholder movement dedicated to tackling the complexities of dementia, held a one-day event dubbed Dementia Reimagined to facilitate discussions on how to foster excellence in person-centred care and ensure that people with dementia are living as fully as possible. The event brought together three dementia experts from different parts of the world to lead a discussion about shifting the ways in which professional caregivers, family members, and the general population look at dementia and dementia care.
The event, which was sponsored by Gordie Howe C.A.R.E.S. and held on June 19, included a working round table during the day, where visiting experts Professor Claire Surr, Daniella Greenwood and Dr. Allen Power met with 50 invited guests, including families of those with dementia, academics, health professionals and other key stakeholders. Later in the evening, the public was invited to see the experts in a panel discussion hosted by local media personality Dave Kelly.
“The intention was to create inspiration and hope for people impacted by dementia,” says Barb Ferguson, Executive Director of the Alzheimer’s Society of Calgary, which partnered with Dementia Network Calgary for the event. “Dementia Network Calgary is really about building a movement around dementia in our community, and this event was part of that movement.”
Surr, Greenwood and Power share similar perspectives when it comes to recognizing and respecting personhood in those with dementia and helping to build care models that do the same. Each has a different area of focus, however, and all contributed different points of view to a productive discussion.
Educating the Professionals
While attending the University of Bradford in the UK, Claire Surr studied under Dr. Tom Kitwood, who pioneered the concept of person-centred dementia care. Now a researcher who has specialized in dementia care for her entire career and currently working out of Leeds Beckett University, Surr focuses on high-quality education of the dementia care workforce so that they can best deliver individualized person-centred care to people with dementia.
While Surr recognizes that the current system of care homes and hospitals isn’t necessarily ideal for people with dementia, her priority is to develop and evaluate evidence-based interventions, methods and approaches that can help to improve care quality.
“There are many different models of care, and I am open to them, but we’ve got to recognize that we have a lot of care homes and we need to improve the quality of care in them now,” Surr says. “The challenge lies in getting staff to have the right skills and to know the right approaches to delivering care to people who are physically frail in addition to living with dementia.”
Surr’s research shows that when professional caregivers are given face-to-face instruction, engaging content, clear educational materials, opportunities for discussion and tailored learning experiences, they are better equipped to deliver quality person-centred dementia care. Surr was part of a consultation process that worked with Health Education England to develop an education framework for dementia care professionals (released in 2015) that covers areas including person-centred care, communication, end-of-life care, working with families of people with dementia and other topics that are key to the well-being of people with dementia.
Unfortunately, Surr’s research also shows that, even with the best training, well-being can’t be improved unless organizations implement a culture and system that’s actually conducive to person-centred care. It’s a tall order, but Surr says the outcomes warrant the effort.
“In terms of outcomes, we would hope through better-thought-out quality of care to see better quality of life for people with dementia, reduced disability and less distress. It could also mean having a better death, and it would mean caregivers feeling less stress,” she says. “There are lots of different outcomes we would see from training, but you have to get all the other pieces in place to put things into practice and realize the benefits.”
Implementing a Consistent Staff Assignment Model
Operating under the philosophy that maintaining a person’s sense of dignity, individuality and self-determination is key to delivering effective and positive dementia care, Daniella Greenwood’s work is most focused on changing care models so that people with dementia are treated as participating and contributing partners in their own life. Formerly the national strategy and innovation manager for Arcare, a series of care residences in Australia, Greenwood now acts as a consultant, helping care facilities in both Australia and Canada implement staffing models, policies and approaches that best facilitate a more humane vision of care.
“There’s a stigma and a paternalism that we still see toward people with dementia. The minute someone moves into a long-term care setting, it’s just assumed that they won’t speak for themselves anymore,” Greenwood says. “My focus is around rights and how we can promote people’s ability to be self-determining and to actively participate in their lives.”
Greenwood advocates that the first step in achieving that is to implement what she calls the “consistent staff assignment approach.” In the simplest terms, this means ensuring that people living with dementia are supported by a small and consistent care team rather than an endlessly changing parade of caregivers.
Ideally, Greenwood likes to see care facilities broken into smaller sections where the same staff work consistently. As a result, staff get to know the people they’re caring for, and the residents with dementia become comfortable with their caregivers and feel a deeper personal connection. While this model is easier to institute in smaller group home settings, Greenwood says that, with a little imagination, it can work in the largest care home facilities.
The outcomes that Greenwood has observed after implementing a consistent staff assignment model are dramatic — she’s seen the system put into place in more than 40 facilities, and not only do residents appreciate being able to form real relationships with the people supporting them, but staff overwhelmingly also prefer the intimacy of the arrangements, leading to greater job satisfaction and less staff turnover. Most importantly, the consistency and personal nature of this kind of staffing changes the culture of dementia care, making people with dementia feel like they’re valued and looked at as full adult human beings.
“Relationships are everything for these residents, and protecting and nurturing those relationships is important. We’ve got to get rid of these ideas that people need to be taken care of by experts,” Greenwood says. “This model really flattens the hierarchy. It’s about people getting along with each other.”
Dr. Allen Power
Honouring the Seven Pillars of Well-Being
Dr. Allen Power has spent much of his career as an internist and geriatrician, but, as the years have gone by, he’s found that he can make a greater impact as an author, educator and public speaker. A clinical associate professor at the University of Rochester in New York, and the Schlegel Chair in Aging and Dementia Innovation at the Schlegel-U. Waterloo Research Institute for Aging in Waterloo, Ontario, Power uses his platform to advocate for the overall well-being of people who are living with dementia.
Power’s work is centred on the redefinition of dementia so that caregivers see and respect that people with dementia have the same basic emotional needs as everyone else, regardless of their diagnoses. He feels that traditional care models act to manage dementia symptoms, but often fail to look at people with dementia as whole human beings who exist beyond their disease.
“I want to redefine dementia not as a brain disease, but as a shift in the way a person experiences the world around her or him,” Power says. “Our job is to understand that changing experience, and to give every person the accommodations they need to live as fully as possible.”
Power identifies seven different pillars of well-being — identity, connectedness, security, autonomy, meaning, growth and joy — that every human being must tend to in order to be happy and well-functioning. When those pillars aren’t tended to, a person with dementia may exhibit signs of distress that are attributed to their disease, but could easily be alleviated if caregivers address whichever aspects of well-being is lacking. Power gives the example of a care home resident resisting bathing: traditionally, care staff would assume that the resistance is a symptom of dementia, when really the person may simply feel like her autonomy and security are being violated, but isn’t able to articulate it. If that sense of autonomy is nurtured, personal care becomes less stressful and the person’s quality of life is improved.
Instituting this philosophy in a care facility or even through home care can be easier said than done, but Power says that once caregivers start approaching well-being from a holistic point of view rather than seeing someone as being totally ruled by their disease, people with dementia can live more fulfilling lives.
“We can’t cure dementia, but we can improve someone’s well-being today,” he says. “We don’t need to give them a new pill for them to move toward a more meaningful life. To me, it’s an empowering message that anyone can start to support people differently.” [ ]