By: Myrna Norman and Maria Panzera
January is Alzheimer’s Awareness Month, a time to listen deeply to the voices of those living with dementia and to reflect on how care systems can evolve to meet their needs with dignity and compassion.
Myrna Norman was diagnosed with frontotemporal dementia in 2007 and later with Lewy Body and Alzheimer’s. At the time, she was told she had only 5–8 years to live. “Hope and joy were not part of the language when I was first diagnosed,” she recalls. “It was all about preparing for the end of life.” Yet Myrna chose advocacy, working with universities, research networks, and grassroots groups to plant seeds of awareness, empathy, and education.
Her reflections highlight why a palliative approach to dementia care matters. Palliative care is not only about the final stages of illness—it is about supporting comfort, dignity, and person‑centred decision‑making from the earliest point of diagnosis. For Myrna, this means more than medical management. It means care that recognizes her identity, values her relationships, and nurtures her sense of purpose. “Awareness of services, grassroots support, and an emphasis on joy and purpose must bloom,” she writes.
A palliative lens changes the dementia experience in several ways:
- Daily life and identity: It helps individuals stay connected to who they are, focusing on strengths and interests rather than losses.
- Communication and relationships: It encourages care providers to listen, adapt, and build trust, reducing stress and fostering meaningful engagement.
- Support for families: It recognizes the heavy burden on care partners and provides resources to sustain their health and resilience.
- Planning and decision‑making: It integrates advance care planning early, ensuring that wishes are understood and respected as dementia progresses.
Myrna’s advocacy also shines a light on what happens when this approach is absent. She has witnessed people tied into beds, placed in wheelchairs when they are mobile, and left without stimulation or social contact. “We need to change this situation,” she urges. A palliative approach offers that change—by centering empathy, compassion, and holistic support.
As Alzheimer’s Awareness Month unfolds, Myrna’s story reminds us that dementia care must go beyond clinical routines. It must embrace the whole person and their family, weaving comfort, dignity, and joy into every stage of the journey. By listening to lived experience and integrating a palliative approach to care, we can create systems that truly honour those living with dementia.
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