Dementia care advocate Kate Swaffer gets fed up.
“We continue to be bombarded with mostly negative narrative of living with dementia, with an almost complete focus on the losses and deficits,” Swaffer says. “If all we see and read about dementia is on the loss and devastation, on our grief and loss, our changed abilities, our loss of memories and capacity, and how hard it is for our ‘carer’s, then no wonder it is now the most feared disease.”
“Just for a change, could we please see something in the media celebrating the other side of dementia?” she asked in a blog post bemoaning the way people generally view the disease and the people who have it.
I agree with author and activist Swaffer, a former nurse who cared for several family members who had the disease and who now lives with young onset dementia herself. We need to change the way we dementia and the people who live with it. We need to be balanced, rational and compassionate in our approach. We need to help people who live with dementia to keep living well, not to treat them like they’re already dead.
I commented on her post: “I believe we are as much “the media” as anyone else. I believe every single individual out there is “the media,” and the more we do to live our lives as an example to others, the more we are using ourselves as media and as instruments to change the world.”
In addition to advocating for better approaches to dementia care, including stopping the inappropriate use of antipsychotic medications, I continue to feature uplifting posts that celebrate “the other side of dementia.” Here are links to seventeen of them:
- mama don’t forget i love you
- top 15 things dementia care partners say they’ve learned
- we too are one
- i see you, i love you, i miss you
- they kept holding hands despite everything
- tiny bubbles and wendy’s mom
- more in touch with love than ever
- joys and tears these last three years
- 5 inspiring care partnering memoirs full of love and hope
- combining eldercare and childcare under the same roof creates joy and magic in the moment
- 5 rewards i get for being a dementia care partner
- 5 uplifting emotions felt by Alzheimer’s dementia caregivers
- joy to the world and to us too
- the amazing gift of alzheimer’s dementia: love and compassion in action
- the most beautiful love stories ever
- what 18-year-old alice wants you to know about being a dementia care partner
- three books and one loving video that will change the way you see Alzheimer’s disease
Life itself is a comedic tragedy, and we all die in the end. Why would dementia be any different?
Image copyright: jameschipper / 123RF Stock Photo