Being seen goes deeper than recognizing the visible attributes of a person. When a person is truly seen their inner complexities shine and all labels associated with them (such as Alzheimer’s disease) are shed. Their preferences in everyday life are understood and their uniqueness is honored.
This was the message that Susan Ryan, The Green House Project senior director, brought to the stage at the 33rd International Conference of Alzheimer’s Disease International (ADI), held July 26-29th in Chicago, Ill. Ryan delivered a keynote presentation and participated in a panel discussion with the goal of ‘power washing’ conventional thinking in today’s dementia care.
The Alzheimer’s Disease International Conference is the the longest running and one of the largest international conferences on dementia, attracting delegates from around the world. Ryan was among a range of international expert speakers, making up a unique program that enables participants to learn about the latest advances in the prevention, diagnosis, treatment, care and management of dementia.
The concept of being seen (#SeeMe) applies especially to a large percentage of people living in long-term care settings, who are defined by their diagnosis of dementia. Their diagnosis assigns them a label that emphasizes what they can’t do and what’s been lost. Ryan’s message was a call to destigmatize and humanize those living with dementia, in order to see the whole person first.
To see this in action, Ryan encouraged the audience to take a deeper look at how the symptoms of dementia are presented to the outside world. She noted that the Behavioral and Psychological Symptoms of Dementia (BPSD) is a term used to describe the following “symptoms” that occur in people with dementia: agitation, aberrant motor behavior, anxiety, elation, irritability, depression, apathy, disinhibition, delusions, hallucinations, and sleep or appetite changes. According to a 2012 study in the Frontiers of Neurology, about 90 percent of people with dementia have BPSD. Ryan noted that while this finding is not surprising, it is presented in a way that categorizes people with dementia even further.
Instead of following common thinking, Ryan said, what if instead the finding was that 90 percent of people living with dementia will find themselves in a situation where their well-being is not adequately supported? Attendees were encouraged to take it a step further and think through how this revolutionary way of thinking would change the way that providers and other stakeholders “#SeeMe.”
The good news is that this is already happening, Ryan noted. The Green House Project has developed Best Life, a memory care program that is built on the initiative’s core values of Meaningful Life, Empowered staff, and Real Home. Best Life is a process to transform the paradigm and defy the stigmas associated with dementia, she explained.
Ryan concluded by imploring her international audience to “lead the way, address the stigma surrounding dementia, and support caregivers with the skills to see each elder as a unique individual, and to connect them to a meaningful life.”