June of 2012, Jayne Clairmont, of English Rose Suites and bhome by English Rose Suites, went to Washington, DC to serve as a member of the Leadership Committee with the National Dementia Initiative. This group was led by leaders at CCAL-Advancing Person-Centered Living and in addition to Jayne, included other members from prestigious practice, policy and research sectors: the Mayo Clinic’s Alzheimer’s Disease and Research Center, Samueli Institute, The Senate Special Committee on Aging, and UCLA’s Luskin School of Public Affairs. This particular meeting was focused on Reframing Dementia Care. This group of experienced leaders and practitioners in all aspects of the field of dementia and Alzheimer’s study or care, began by looking at five major areas of focus:
- Philosophies, Values, and Foundational Principles – The philosophies and values for reframing the approach to caring for, with, and about persons with dementia.
- Language and Operative Definitions – Using language which honors personhood and the reciprocal nature of caring.
- Reception of and Responses to Behavior – Understanding dementia using practices and skills that support the well-being of people with dementia.
- Key Constructs and Practices of Optimal Culture and Care – Optimal culture and care which are the requisites for enhancing the well-being of persons living with dementia. An emphasis on creating an environment which honors the person living with dementia, builds on the person’s strengths and abilities, and includes them in decision-making as much as possible.
- Research Practices and Outcomes – Analyzing research to assure that what is being done is achieving the desired outcome and that what is being studied is significant.
These important discussions illustrate just how multi-dimensional dementia care is and how all the aspects of care and environment need to be in place to support wholeness or the person living with dementia will falter. The National Dementia Initiative is working to reframe dementia care nationally with a Leadership Team which is
- serving as a central coordination hub and providing links to other national dementia efforts; developing a white paper for policy makers, providers, consumers, and media;
- identifying obstacles to disseminating and implementing reframing of dementia care; and
- identifying obstacles to dementia care research – all towards providing a valuable, organized pathway to transform an existing model of care that has never been effective to begin with.
An overriding emphasis in every effort towards this goal is to mitigate the prevalence of inappropriate use of antipsychotics for people with dementia, not just in nursing homes, but in all settings. The personal impact is diminished quality of life for people already suffering from extensive losses due to their disease.
Everyone needs to think and act differently. We have a moral and ethical obligation to foster and support the well-being of people with dementia.