Yes, You Can Live Life Well With Dementia

By Jenna Weiss R-DMT, LNHA, Director of Learning at LiveWell

The phrase living well and dementia don’t traditionally arrive in the same sentence. It’s time to change that. 

According to my friend and colleague Bob Savage, who is self-proclaimed ‘living well with Alzheimer’s”, the first step is to listen.  

 Listen to more and more individuals diagnosed with cognitive change talk about their initial experiences, their adaptive strategies and aspirations for themselves. Bob actively advocates for the transformation of our personal and societal beliefs about dementia, the systems to support preventative brain health and diagnosis, and systems of care and services to recognize the full efficacy of individuals on this disease journey.  

I sat down with Bob recently to listen and understand better what he is talking about in living well and how his perspective may offer insight for others. “Do something every day that is challenging for your brain. Anything that disrupts the day-to-day routine of the day.” He advises. He talks adamantly about taking risks; ‘the first step is often the hardest, after that, you learn to fly”. 

Bob explains that actively seeking out and taking those risks is a kind of faith, “what I find interesting is the state before you have challenge, like in support group, you know what you want to say, and you know it might rock the boat. Once you do, just saying how you really feel takes you to the next level”.  As a painter, he uses the metaphor of a river to explain the way this looks-that the water in his brain river is pretty dark and polluted with those plaques and tangles, but he’s doing things – like taking risks specifically, that create ‘new white cells’ and those white cells are continually adding into the brain river and lightening the water.  

He shares, “when you are ‘dementiatized’ (his word for the feeling of stigma associated with dementia), you are not expected to take risks and not supported to take risks.”  

So, a strong factor for individuals trying this risk-taking out, is for those around them to support risk taking. Bob shares his routine of actively paying attention to risks- small ones really make a difference- don’t be afraid to make mistakes. Talk to someone you don’t know. Try something you think you might not be good at, or keep doing something you have found difficulty with. “Keep talking, keep living, don’t let your brain turn to mush”. 

So I am understanding the bigger idea behind living well with dementia- it’s a belief in yourself, that once diagnosed, you haven’t changed, you are not less than (Despite the societal language of ‘suffering’ and ‘victim’). It’s also a call to action for those who are loving someone and informally or formally caring for a person experiencing cognitive change. A call for ‘less action’ perhaps, a call to ‘hold back and let me try it, even if its messy’.  

Bob can often be heard addressing a group of professionals saying “My Life is Better because of a diagnosis of dementia.” When asked to explain further, he states” it’s the risk taking thing, I now allow myself to say ‘I love you’ without fear, I am expressing myself through abstract painting- something I never thought I’d be doing, and at 91 I feel the most free in spirit I ever have in my life.” 

Thanks Bob for inspiring those of us without a diagnosis to live deeper, love ferociously and take risks! 

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