Living After the Diagnosis
Throughout the decades I have been studying and observing dementia, I have found that there is a unique stubbornness that comes along with this disease. Some seem to see it as defiance, but I beg to differ.
Over the years, my role as caregiver to family members with dementia has run alongside a parallel effort to educate the public on cognitive disorders and standards of care. In that time, I have met a great many people working to build full lives after a dementia diagnosis. If there is one quality they tend to share, it is a refusal to be diminished by the stigmas that so often accompany these diseases. I have come to think of this not as stubbornness, but as a quiet and persistent form of dignity.
For the better part of fifty years, the prevailing wisdom has been that an Alzheimer’s diagnosis is, in effect, a verdict. The image most people carry is a familiar one: a figure slumped in a wheelchair, head lolling, staring at nothing, no longer recognizable even to themselves. This picture is not only incomplete—it is damaging. A meaningful quality of life remains possible from the moment of diagnosis through the disease’s final stages. The key, I have found, is finding the right path early.
For the past fifteen years, I have been closely involved with an organization called Dementia Mentors—an international community made up entirely of people living with dementia. I am not sure I can adequately describe what these individuals have given me. No university course, no clinical training, no volume of research has taught me as much as they have. They live with Lewy body dementia, frontotemporal degeneration, vascular dementia, Alzheimer’s disease, traumatic brain injury, and more—and not one of them has surrendered to it. They have bad moments. They have terrible days. But what they have built among themselves—a culture of adaptation, of teaching, of mutual support—is something I have found nowhere else. More information about Dementia Mentors is available at DementiaMentors.org.
Some are still cooking—baking daily, in some cases, as a form of therapy. They have learned to use timers for everything, and many rely on voice assistants. “Alexa, set a timer for 35 minutes.” “Alexa, remind me to take my pills.” The distance between living with dementia today and living with it twenty years ago is difficult to overstate. The tools available now are remarkable. What matters is that people learn to use them early.
When I began caring for my father, the internet was barely a concept most people had encountered. Facebook didn’t even exist. Today, there are online communities for nearly every aspect of this experience— for caregivers, yes, but also, crucially, for those living with dementia themselves.
Among the people I know living with dementia, many are writing blogs, speaking at conferences, and documenting their experiences in real time. I can think of no more direct path to dismantling the stigmas that have done so much damage. These individuals understand their symptoms with a precision no clinician can match. They are, in the truest sense, the experts. The word “mentors” is not a metaphor I chose lightly.
– Gary Joseph LeBlanc, Director of Education - dementiaspotlightfoundation.org
