Moving Beyond Patient and Client Approaches: Mobilizing Authentic Partnerships in Dementia Care
In the 1940s, Carl Rogers introduced the notion of a client-centred or person-centred approach, originally called the "non-directive approach". Over the past several decades, however, we have lost sight of the true intent behind Roger's relational approach, settling instead on well-intended but often paternalistic approaches that place patients or clients at the centre of care, but rarely, if ever, actively involve them in decision-making. This is no more apparent than in the case of persons living with Alzheimer's disease and other related dementias who, due to the stigma and misunderstanding surrounding dementia, are often assumed to lack the capacity to be involved in their own care and the care of others. Drawing on our experience working directly with persons with dementia, family members and professionals, and systematic research on a number of partnership initiatives with them, the purpose of this paper is to present an alternative approach in dementia care, one that views persons with dementia as equal partners in healthcare. During an open-discussion session at A Changing Melody 2008, an annual forum planned in partnership with persons living with dementia for persons living with dementia, a man, self-identified as a person living with dementia, stepped up to the microphone and offered a simple yet rather profound remark. "You know," he said, "I've been having a problem with my doctor and I can't help but think that he would do a better job if he had dementia." Of course, he laughed and we laughed. Many people clapped and cheered. It was obviously a shared feeling, but why? What did he mean? Was he suggesting that expert, clinical knowledge is a poor substitute for firsthand lived experience; that you cannot really know about dementia unless you actually have dementia? Did he wish for physicians and other healthcare professionals to lose their memory of the biomedical model with all of its assumptions and judgements? Or maybe this man's idea of doing a "better job" pertains to more relational aspects, such as slowing down and being present in the now, characteristics frequently associated with the experience of living with dementia. Perhaps he meant something different altogether.