Senior Environments: When We Become Them

Abstract

I have been involved in the design and evaluation of senior environments (or environments for aging, or design for dementia, or memory care, or elder friendly communities, or whatever your choice of language may be) for over 25 years. I've seen a lot of changes in our thinking on some topics. For instance, in the 1980s we thought that people living with Alzheimer's disease or other forms of dementia had unique needs that were and different from the needs of other people living in nursing homes or assisting living communities. I was part of an early Special Care Unit (SCU) initiative, urging care communities to support continuity of self, to individualize care, to create places that feel homelike (not a term I would use now), and to support safety, which usually meant securing doors with some electronic system. We discovered there were many things we could do to support these residents beyond what the typical medical model of care provided; we developed resources to help others learn what to do.There were books, including my own, Design for Dementia (1988); research, including the 11 NIA-SCU collaborative studies funded by the National Institute on Aging (NIA); governmentsponsored publications, for example, Losing a Million Minds (Office of Technology Assessment, University Press of the Pacific, 1987); special task forces and conferences; and so much more. Every conference seemed to have a track on dementia care-best practices, stafftraining resources, the built environment.These were helpful, but something was missing. So I spent time with individuals living with dementia and watched as they sometimes struggled to make sense of the world around them. I tried to learn what would bring on frustration or anxiety. I also saw their amazing gifts of insight, their ability to live in the moment, to still feel and respond to the world around them on their own terms. I learned so much just by being with them. I watched caregivers struggle to both do everything that needed to be done in terms of care and try to be like a best friend or family. The system seemed to pit these two goals against each other, however, and it was the residents who always lost.Have we made progress over the past 25 years? Maybe. Have we improved our ability to support a high quality of life for people living with Alzheimer's? Marginally. There has been little progress on the pharmacologic treatment of Alzheimer's disease over the past 20 years. The best drugs we have may stave offdecline for about 6 months, if you can tolerate the side effects. Not a huge benefit when people generally live with dementia for 12 to 20 years after diagnosis. Other categories of drugs are so overused it should be called abuse. A recent Centers for Medicare & Medicaid Services (CMS) nursing home resident report found that in 2010 almost 40% of nursing home patients with signs of dementia were receiving antipsychotic drugs at some point, even though there was no diagnosis of psychosis. So here it is 2013 and a major initiative of the CMS was to reduce off-label antipsychotic drug use by 15% in 2012. Maybe by the end of 2013 we will only have 34% of residents living with dementia but not psychoses receiving antipsychotic drugs.What about all of the psycho-social-environmental interventions that were developed in special care units? The good news is that we have made progress in this area. First, many people in the field of aging services began to realize that the principles we had developed for special care units for people with dementia were equally applicable to anyone living in a shared residential setting. Everyone wants and deserves access both to privacy and to meaningful, engaging activities. Everyone wants to be able to spend time with people they know, and who know them. Everyone has the right to live with their own personal belongings, to choose their own daily routine, to have choice in when, where, and what they eat. Professionals in the field have accepted that these principles are not dementia-specific but reflect person-centered care practices applicable to everyone. …