Today in STAT, my colleague and friend, Dr. Jason Karlawish from the University of Pennsylvania Memory Center offers “The way we talk about dementia is about to change completely.”
The history of dementia care is less than ideal. Patients struggle to be seen by specialists and many if not most are not even diagnosed. Nihilism is rampant and the resources available to most patients and families on the journey of living with dementia are inadequate. Few treatments have achieved approval for use in dementia, despite many promising ones entering clinical trials but failing to demonstrate adequate evidence of efficacy.
Dr. Karlawish’s essay describes a relatively recent phenomenon brought about by a “revolution in diagnostics and therapeutics” for Alzheimer’s disease. Research is making tremendous progress. That progress has first yielded changes in the quality of available care for people with Alzheimer’s disease. It will eventually lead to similar changes for other causes of dementia and someday we will help people stave off dementia completely.
Research will be necessary to these advances, but so too will be societal change. Stigma around dementia is rampant and pervasive. It affects patients and families at many levels and in many settings, from healthcare, to the workplace, to social settings. And it must change.
I believe such change has begun, sparked by tireless advocacy and indeed tangible progress. This work must continue in pursuit of a society in which there is no shame nor risk in receiving a diagnosis of a disease that has or will someday result in dementia.
