In the progression of dementia, when the ability to function independently gradually changes, it’s not merely the inherent losses that weigh heavily on hearts; it’s also how our culture responds to this profound and life-changing phenomenon. As succinctly stated by the author, “Societal responses to dementia can cause more distress than the disease itself.”
Our featured quote resonates deeply. It highlights the pressing need for our healthcare system to transform its approach to dementia, to recognize dementia caregivers as part of the largest unpaid healthcare demographic, and to provide the support and services needed when caring for an elder loved one living with dementia.
“Seeing dementia as a disability – or changing ability – rather than a fatal disease creates a host of insights to which the biomedical view has blinded us.”
G. Allen Power, MD, internist, geriatrician, author: Dementia Beyond Disease – Enhancing Well-Being
Millions of responsible and capable carers are quietly doing the best they can in extremely difficult circumstances. Dementia represents an ever-changing disability in an uncharted new normal. It is a diagnosis which is bound to change the trajectory of life not only for the person diagnosed with dementia, but also for the primary carer.
Dementia spokesperson, Mary Fridley, Coordinator of Reimagining Dementia, a Creative Coalition for Justice, stated in a recent interview, “People are being hurt by our outdated biomedical response to dementia.” It has been called an “international atrocity” of our own making by the East Side Institute.
What makes it challenging for far too many is the way in which the system provides no viable support and services which one might find in working with people diagnosed with other disabilities. Thus, society immediately stigmatizes the condition and moves on.
“If a family member develops Alzheimer’s, you’re pretty much on your own – no one wants to talk about it. Changing that would improve people’s lives sooner than any drug will.”
Kat McGowan, Health and Science Journalist
Many care partners, the often-unrecognized champions in facing this diagnosis, navigate countless obstacles in compensating for a healthcare system that doesn’t support them. They extend unwavering care in a world that doesn’t grasp their efforts.
Understanding the featured quote helps us appreciate their vital role in the lives of those living with dementia. They are the ones who ensure that dignity and humanity remain intact amidst the elder loved one’s changing capabilities.
As we work together to create a more empathetic world for those who face this diagnosis, we are creating a community of people who foster love, acceptance – and engagement through the creative arts. During a period of preparation for Taking it to the streets, Mary Fridley, the campaign coordinator, wrote the following to members of the coalition:
“We’ve learned from those who helped bring AIDS, autism, disability, cancer, and more ‘out of the closet’ that breaking the silence is essential to fostering love and acceptance.”
Mary Fridley, Coordinator, Reimagining Dementia, a Creative Coalition for Justice
These are profound words whose time has come. We must break the silence and have that talk. We must all become a part of the solution by changing the tragedy narratives which surround dementia care.
In a world of uncertainty, our ability to empathize and support those affected by dementia can make a profound difference. We must think experientially – and begin “the walk” – the one when we, finally, walk a mile in the shoes of the person living with dementia.
“We need to move away from the biomedical model which sees me as my dementia and use the experiential model: Become the person with dementia behind those locked doors!”
Christine Bryden, PhD, Senior Executive to the Australian Prime Minister Christine Bryden: Dreading being put in dementia prison (YouTube.com)
It’s time to rewrite the old tragedy narratives and ensure that dementia is met with compassion and understanding, not ignorance.
The words of the featured meme remind us that the losses inherent in dementia may be significant in the later stages, but this need not be compounded by our cultural responses. To continue the old narratives is to ignore that many people living with dementia are living well for many years following diagnosis.
Together, we can create a world where understanding and empathy prevail, making the journey of dementia less daunting for all involved.
Contributing Author:
Zulekha Ali (“Zuley”) is a freelance writer with a commitment to delivering informative and impactful content to enrich readers’ understanding and empower them to make informed decisions.
Co-Author:
Susan Troyer, MS, BA
Member:
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