Wiping Out the Stigma Is the
First Step to Creating Real Change
Where We’re At
The story we tell of dementia is debilitating to those diagnosed and those who care for people with dementia.
The words “Alzheimer’s disease” bring to mind the image of a person who is unresponsive and incapacitated. We have been told from many sources—the medical community, the care community, the media—that people with dementia are “not there” and are “shadows of their former selves.” The experience of dementia has been termed “the long goodbye,” and we are taught to say goodbye to our loved ones long before they are gone for good.
In this story, a person with dementia loses his or her life twice: Once after diagnosis and once at the actual end of life, which might not happen for 5, 10 or 20 years. After diagnosis, life for people with dementia is never the same, as everyone around them begins to say “goodbye.” Unfortunately, most friends say “goodbye” way too soon, and loneliness is a common experience of those with dementia. In addition, the person with dementia is encouraged to say “goodbye” to life as well, to disengage from their jobs, their activities, to prepare for the end. They lose purpose in living, leading to loss of self-confidence, increasing withdrawal and isolation, and a requirement for increased care. Saying “goodbye” too soon costs lives and money.
Where We’re Going
Changing the story of dementia—from one of deficits, loss, and disability to one of gain, ability, empowerment, value and purpose—will refocus our answers to the impact of dementia on our world and provide a framework for our actions.
By changing the story–by choosing to empower people with dementia to live engaged, purposeful, social, healthy lives–we can change the caregiving experience, how people with dementia are accepted in and enabled by our communities, reframe our models for caregiving well into the later stages of dementia, and extend the time before people with dementia require long-term care, saving our health care system billions of dollars in the process.
But until we change the story—wipe out the stigma—we will remain at status quo, telling the same old story over and over and perpetuating the myths that surround dementia. Wiping out the stigma is the first step towards real change, and that’s why it’s the Vision of Mindset Centre for Living with Dementia.
Our Vision: To Eradicate the Stigma of Dementia
Until we change the story—wipe out the stigma of dementia—we will remain at status quo, telling the same old story over and over and perpetuating the myths that surround dementia. Wiping out the stigma is the first step towards real change, and that’s why it’s the Vision of Mindset Centre for Living with Dementia.