It’s Time to Redefine Dementia

View article: Leading Age Magazine September/October 2014

By: Michael Smith

May you be fortunate enough to live in times that demand the need for social change, and may you, as Horace Mann said, “be ashamed to die until you have won some victory for humanity.” Let us rise to the challenge of our time and take the lead in redefining, reformulating and reevaluating how our society views aging, particularly people living with dementia. How can we leaders in aging services challenge our accepted dementia care practices and shift our framework to one which emphasizes the well-being of people affected by dementia wherever they happen to live?

Our current delivery of long-term care, especially for people living with dementia, is neither adequate nor acceptable for ensuring a high quality of life. We have disempowering hierarchies that limit opportunities for participation in decision-making by those most directly involved in care and those who are, ostensibly, being served. We have adopted medical models of care that oversimplify the human experience. Our “expert”-dominated culture privileges scientific knowledge over lived experiences. We aim for the efficient fulfillment of functional goals, and end up creating recipes for care and disciplinary silos of service delivery. In dementia-specific settings, these challenges are exacerbated by misunderstandings and stigmas that make people living with dementia invisible and limit their contributions to their own care and services.

Our society has adopted the belief that people living with dementia are experiencing “the long goodbye.” We have accepted that a person living with dementia will have less relevance as their dementia progresses. We act, believing that people living with dementia are not capable of having the necessary insight into their own experience to know what is good for them. Other people become their proxies and “we” step in to “care” for them.

Our society has yet to demonstrate success in our ability to be qualified decision makers for others whom we determine are less than capable. We have not succeeded in our treatment of people who were native to this continent, people who were kidnapped and brought to this continent as slaves, minorities, women, children born with developmental disabilities, and countless other marginalized segments of our population. Only through self-advocacy has each of these groups won some victory for humanity. The lives of the people in each of these groups improved appreciably once they became self-advocates and society recognized them as worthy of something better.

There are several good examples of people living with changing cognitive abilities that have formed self-advocacy organizations. Dementia Alliance International and To Whom I May Concern are two such organizations that are shifting our society’s views about life with dementia.

Within our organizations, we all need to reexamine the value we attach to people living with dementia. Our language, our perceptions and our practices must change. The word “demented” literally means “without a mind or brain.” This labeling must change. No longer do we refer to people born with different learning abilities as retarded. Racial, ethnic, homophobic and gender slurs are dropped from our vocabulary when we begin to accept that all humans have similar desires and we do not need to be categorized, labeled and segregated by our differences. Our sensitivities and language have evolved, appreciating that words selected to describe “the other” often hold negative judgments that keep people in subservient places.

Within our organizations, we all need to reexamine the value we attach to people living with dementia. Our language, our perceptions and our practices must change.

Labels such as “Alzheimer’s patients,” “victims,” “sufferers” or “dementia residents” serve to perpetuate stigmas and separate people living with dementia from people who do not have dementia. As Dr. Al Power suggests, “We need to change our minds about people whose minds have changed.” What if we accept Power’s offer to redefine dementia as “a shift in the way a person experiences the world around them”? This sounds a lot different than “people without minds,” “people who are losing their minds” or “people who are fading away.”

Our accepted practices need to evolve as well. We have created segregated communities to care for people with changing cognitive abilities. Believing that we know what is best for “those people,” we have locked these communities, labeled them “memory care,” or worse “dementia units” and afford limited freedoms and connection to the world beyond the secured doors.

Traditional memory care environments (a term I do not endorse) base their models on knowledge from experts devoted to caring for people with dementia. With limited exceptions outside of our country, no care models have been created in our nation by or with people living with dementia. We further reproduce this dehumanizing paradigm by creating train-the-trainer programs, designed by experts, that do not offer people living with dementia a lead role in their own lives. These traditional training models limit the creation of optimal learning relationships and deny opportunities for genuine engagement and shared educational experiences.

Traditional care models have disempowered, stigmatized and marginalized the very people whose lives they seek to enhance. People living with dementia become objects that are acted upon rather than partners in their own care. This must change. People living with dementia must be respected as the true experts on and primary authorities over their own lives.

People living with dementia deserve to realize their potential in society. How can we as not-for-profit leaders shift personal, organizational and societal perceptions and amplify the social justice concerns of people living with dementia so they may realize their potential in society? Let us seize the opportunity to engage people living with dementia in self-advocacy, affirming their role as leaders and teachers. Let us create education frameworks that create optimal learning relationships and experiential learning; bringing all care-partners together, including people living with dementia.

Organizations like ours that seek to improve the lives of people living with dementia are taking the opportunity to pause, reflect and re-examine frameworks for engaging the very people we serve. People living with dementia are engaged in every educational opportunity we offer. They are our best teachers and they love that they are a vital part of transforming the communities in which they live.

Let us seize the opportunity to engage people living with dementia in self-advocacy, affirming their role as leaders and teachers.

The best example of this “true expert” teaching can be found in Canada, at the University of Waterloo’s Murray Alzheimer’s Research and Education Program. Researchers there have asked people living with dementia what they want. Their research connected them with talented and passionate people living with dementia. These people created the By Us For Us© Guides. These guides “are designed to equip persons with dementia with the necessary tools to enhance their well-being and manage daily challenges. What makes these guides particularly useful is that they are created by persons with dementia and/or partners in care, for persons with dementia and/or partners in care.”

Nationally, LeadingAge has created the Innovative Dementia Services Network, and similar networks are being created by members in their respective states. Our national network has committed itself to re-examining the broader question of “What does it look like to live well with dementia”? This will include asking the true experts: people living with dementia. We hope to share our thoughts with our entire membership, and hope you will join. To learn more, click here or contact Leading Age’s Kirsten Jacobs at or 503-894-8701.

If you are considering improving the support and experiences you offer to people affected by dementia, or if you are planning to create a designated community to support people in living well with dementia, please pause, reflect, and reconsider how you may redefine dementia, how you view people living with dementia, and what living well might look like. We invite you to participate in this important exploration. Together let us win a victory for humanity.

Michael Smith is president and CEO of Alzheimer’s Resource Center of Connecticut, Plantsville, CT.

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