Redefining dementia

At last I have read an article about dementia, where the author is respectful of the language he uses to refer to us, that is also positive and focuses on living well. Congratulations Michael Smith, from the LeadingAge Magazine in the USA.It is a rare find, but also very encouraging and I am delighted to highlight it here.

Once more people without dementia start to write and speak respectfully about people with dementia, and speak up for our rights, I feel sure others will start to listen…

During Dementia Awareness Month 2014, I have had four or five positive responses to my request to change the language being used to refer to people with dementia, and am thrilled to also see this change. I will feature these journalists in a blog in a few days.

It’s Time to Redefine Dementia

By Michael Smith, September / October 2014 Volume 4, Number 5

Michael Smith Source: LeadingAge Magazine

Michael Smith
Source: LeadingAge Magazine

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.

Read the full article here…


4 thoughts on “Redefining dementia

  1. Great article Kate. Last week I was at the Conference for Ageing and Pastoral Care and in some places there is a move to open “dementia units” so that the residents are able to walk around freely and interact with other people and go about their lives unhindered by the crippling regime of living in a closed unit. But it takes a willingness for organisations to step out of the box, to have management, staff and family on board to try something innovative.


  2. Another brilliant blog Kate. I hadn’t heard of To Whom I May Concern. I am hopeless with FB & don’t seem to have my a/c details to hand; will try to find them so I can add my support. What a fantastic way to redefine dementia. The film is very powerful; I kept writing down quotes to use in my blogs: “I’m trying to find something I can do”, “My face is the face of dementia .. & my eyes are full of life”. Well done! Again.


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