Helga Rohra Voice with Dementia Inspires by Example
You wouldn’t know it by her schedule, but Munich-based Helga Rohra is on the go “giving awareness talks about 100 times a year,” she writes via a Facebook message. She adds that speaking before audiences (often as many as 200 people) keeps her brain active.
Perhaps this is so, but consider what Helga did before she was diagnosed with dementia in 2007.
Helga Rohra spoke multiple languages including Dutch, English, German, and Spanish. A single parent with one son and two cats, she could promptly fashion an articulate response to most questions.
Suddenly things began to change. She forgot words, even in her native German. She got lost. She began to see things — to hallucinate. Tiredness became a constant companion.
At age 54 in 2007, she received the diagnosis of Lewy body dementia. Trying to make sense of a shocking diagnosis, she asks, “Why did I get dementia? I was active physically, mentally. My blood pressure and cholesterol are low.”
Helga Rohra has been an outspoken advocate for dementia awareness for a half-dozen years. She evokes strength and through her own journey, encourages people to explore what’s possible after the initial shock of diagnosis. It took her two years.
Her son is her assistant and her cats are her companions. Whereas, social engagements were fun and she’d participate frequently, today, they are exhausting. “It takes some time till you have to start accepting yourself with all the deficiencies, all the symptoms dementia presents,” Helga writes.
In a March 2011 interview, published a year later at Alzheimer’s Europe – Personal experiences of living with dementia, she writes:
I attend German and European conferences. I tell them to forget what books say about cognitive impairment and to instead please realise the still existing abilities people with dementia have and promote them! I tell doctors, carers, authors to talk to us, to listen to us, to involve us in their decisions about new programmes for people with dementia. We know best what we need, what burden our family carries day by day. I speak up for us all: Involve us, believe in us.
Beyond her full schedule of speeches and interviews, Helga has written a book. Working with a “book partner,” she was able to put notes and ideas from hours
of conversations into a coherent and organized manuscript. For more information on how she wrote this book despite living with dementia, read about it in this article linked at the Dementia Alliance International site. [TCV Update 9/27/2022: URL updated] The English translation will be released in London this summer.
Helga inspires by example. She speaks for all people with dementia when she reminds everyone: “I am still valuable. I am still me.” Only after people with dementia realize this and remind others of this, she says in her speech before an audience of care professionals, researchers, and people with dementia, “Then you realize what it means to live well with dementia.”
When asked what message do you want to leave with us, Helga replies with her Credo: Do Not be a VICTIM of your Dementia – Believe Strong and You will be a VICTOR !
Helga is a fighter. Just last year, she presented the keynote during the second day of the Alzheimer’s Disease International annual conference.
She expresses her opinions about the words we use to talk about people with dementia. Words such as “stage” as in stages of dementia, or dementia “sufferer” instead of how she sees herself as a fighter. She asks why the phrase “dementia friendly,” drawing attention to the term friendly. She admits, each time her doctor sees her name on the list he gets a bit [inaudible]. The audience reacts with laughter. Helga is the new kind of patient who advocates and speaks up on her own behalf and for the millions of others living with dementia.
Click below to view her 27-minute keynote on day 2 of the Alzheimer’s Disease International’s conference in Perth Australia.
