“Dementia doesn’t rob someone of their dignity, it’s our reaction to them that does.” – Teepa Snow

Like most people in the field of senior living, I’ve learned everything I know about dementia from other professionals and service providers. I recently attended a session at the LeadingAge PEAK conference that completely shifted my paradigms.

This session was different. It was taught by a different type of expert – a panel of individuals who have a diagnosis of, and are living with, dementia. It included advisory board members of the Dementia Action Alliance, an advocacy and education organization of people living with dementia, care partners, friends and dementia specialists.

Rather than speaking of decline and deficits and despair, these panelists spoke of hope and possibility. They shared a new paradigm in which people don’t just exist with dementia but truly live and craft new hopes and dreams for the future. They shared stories of the gifts that come with a dementia diagnosis such as heightened spirituality, closer connections to people and to nature, and a deeper enjoyment of life.

The panelists also shared stories of the devastating and dangerous impact of the stigma that surrounds dementia. From the moment a diagnosis is received and a doctor says, “I’m sorry… go home and get your affairs in order,” our current framework is focused only the losses that come with dementia – an approach that serves to marginalize and ostracize those who are living with dementia and their families.

By fighting back against the stigma and shame that surrounds dementia, the panelists believe that we can reduce fear. And, with this new approach, people will be more likely to get an early diagnosis rather than hide their symptoms. This puts the person in the driver’s seat – in control of his or her own future. Rather than dreading the future and isolating him or herself, an individual can choose how to live life from that moment of diagnosis forward. He or she can learn to use technology like Amazon Alexa or a smartwatch to retain independence and plan what should happen when living independently is no longer an option. It’s time that the voices of those living with dementia are heard – we have much to learn.

Jill Vitale-Aussem is the President of Eden Alternative and is dedicated to creating quality of life for Elders and their care partners. She worked with Christian Living Communities and our sister organization, Cappella Living Solutions for eight years.

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