Calling for a New Normal

By: Karen Love, DAA Executive Director, and the DAA Advisory Board

July marks the beginning of the Dementia Action Alliance’s (DAA) 25th anniversary celebration! As we look back over the past 25 years, we are proud of how much we have been able to accomplish and thankful for the many friendships made.

We cannot celebrate DAA’s progress though without also acknowledging how little has changed in the lived experience for people with dementia and their care partners over the past 25 years. There is virtually no better understanding of the symptoms of dementia now as there was in 1996. There remains minimal focus by the medical community on learning how to manage and accommodate symptoms of the major forms of dementia (e.g., Alzheimer’s, Lewy body, vascular, and frontotemporal).

Treatment of dementia continues to be in the dark ages. Most diagnosing physicians believe there is little that can be done as there are no medical cures. People typically are told after being diagnosed to get their affairs in order and come back in six months for monitoring. This doom and gloom narrative creates a culture of learned helplessness, depression, and isolation. People being diagnosed are not provided with information about how to live with and manage the chronic and complex symptoms of dementia. There are virtually no supports available to them as are available to people with other conditions, such as cancer, stroke, or traumatic brain injury. People are left to figure out how to live with and manage their complex medical condition.

This past year – marked with a global pandemic – has demonstrated the importance of scientific evidence and evolved understanding. These were able to happen relatively quickly and efficiently during the pandemic. Why have scientific advances and evolved understanding about treating dementia bypassed one of society’s most vexing health conditions impacting over 6 million Americans?

There is an abundance of research about the positive effects of supporting well-being for people living with dementia. Two longitudinal, population-based studies, the Cache County Study in the U.S. and the IDEAL Study in the United Kingdom, have yielded many important evidence-based insights about living with dementia symptoms. This and other research show that following healthy lifestyle habits, such as eating nutritiously, reducing stress, being physically and socially active, and doing things that are fun, interesting, and meaningful, not only contribute to well-being but actually can help manage some of the symptoms of dementia.

Yet despite the abundance of research, outdated and uninformed practices that exacerbate symptoms of dementia are the norm. What will it take to make enabling practices that support well-being and changing abilities the NEW NORMAL? Perhaps an “I’m as mad as hell and I’m not going to take this anymore!” uprising. Maybe a #MeToo moment.

DAA thinks an important first step to a NEW NORMAL is by filling a vital resource gap that supports well-being – a comprehensive manual of information and inspiration, grounded in science, about how to live with and manage the symptoms of the complex condition of dementia. Educating individuals and their support networks about how to live proactively with the symptoms of dementia leads to building reliance and empowerment, a problem-solving mindset, enabling rather than disabling practices, and a sense of purpose and well-being.

Please join us in collaboratively developing this first-of-its-kind “how to” manual! The Lewy Body Dementia Association, the Cleveland Clinic Lou Ruvo Center for Brain Health, the Chicago Center for Cognitive Health, Dementia Friendly Indiana, and the Global Council on Alzheimer’s Disease are a few who have already signed on to partner on this effort.

Work will start on the manual in September 2021. If you are an organization, company, or group interested in partnering on this project with us, please contact Karen Love.

There is no cost or fee to partner – just a passion for a NEW NORMAL.