It’s not Kate Swaffer’s birthday, nor does she have a genie in a bottle, but she has wishes. Big ones.
“To keep suggesting there will ever be a world without dementia is truly insensitive, and in my humble opinion, rather pointless and stupid,” wrote dementia care advocate Kate Swaffer in her usual frank style. “I really am sick of the fundraising campaigns using it too, as the money for research is not being shared enough with those who want to research better care.”
Swaffer, a former nurse and care partner to several family members who lived with dementia, has a Masters of Science (Dementia Care, Distinction, 2014); she herself lives with young onset dementia. Swaffer is one of the founders of Dementia Alliance International; she is also a prolific blogger, author, poet, as well as a wife and mother.
I agree with Swaffer’s take on the general attitude most people have toward dementia and research. While the goal of ending Alzheimer’s is admirable, we need to spend a whole lot more time, money and energy finding ways for the people who live with Alzheimer’s disease and other dementias to live well, and for those who are their care partners to be trained in the skills and knowledge required to provide the best care they can. If we don’t find ways to deal more effectively with caring for people who live with Alzheimer’s disease, our healthcare systems and our families will be decimated.
Here are Swaffer’s eight wishes for dementia (originally posted here), with relevant links back to posts on her blog all of which are well worth reading:
- Better care
- Less stigma
- Less discrimination
- Less fear & more kindness
- Better access to our community
- Disability support like everyone else gets
- Support to live with dementia, not just to die from it