Poetry, Advocacy and Dementia

Written by: Kate Swaffer, Co-Founder, Dementia Alliance International

Published: 27/04/2018

Kate Swaffer shares her story and describes the powerful impact poetry can have, helping her to make sense of her dementia

To coincide with the last week of our Poetry Callout, Kate Swaffer(this link will take you away from our website)  has very kindly shared a poem about her experience of living with dementia, including a short introduction about her work founding Dementia Alliance International.

Many people with dementia often find new ways to be creative, and research suggests poetry supports well being and living more positively. Poetry is one form many have found to support that, and Kate Swaffer started blogging (this link will take you away from our website) and writing poems after her own diagnosis of younger onset dementia aged 49, not only as a way of helping her to make sense of dementia and record her experience, but because poems seem to ‘appear’ from nowhere. Before dementia, she had not regularly written poetry, but since her diagnosis, Kate has published two poetry books, and her third will soon be released. Kate also shares some of her poems on her website and has given permission to share this one called ‘The Loneliness of Dementia’ (this link will take you away from our website) with Dementia Carer Voices.

Kate Swaffer and seven other people diagnosed with dementia found another way of positively supporting themselves, through advocacy. Together, on 1 January 2014, they co-founded Dementia Alliance International (DAI), which is an advocacy and support group, run by, and for people with dementia. DAI is very active globally in the pursuit of human rights and access to the CRPD for people with dementia and their families. Kate has been a key activist in giving the global conversation about dementia as a disability a loud global voice, and for rehabilitation and disability support for people with dementia.

Through free membership, weekly online peer-to-peer support groups, one to one mentoring, monthly online cafes and meetings, and monthly educational webinars for the whole dementia community, we have found ways to raise awareness and educate others.

Members of DAI work to reduce the stigma and isolation, and to increase and empower us, and others to live more positively with dementia.  Dementia does not have to be the medicalised view of only ‘deficits and death’ as most of us are still being advised, but rather, one where it is possible to still live productive and meaningful lives, at least until the disease progresses. Of course, this is the same for all terminal or chronic diseases.

We all live until we die; there is not need to metaphorically die at the time of a diagnosis of dementia!

People diagnosed with any type of dementia can join DAI here (this link will take you away from our website).

Everyone can subscribe to our weekly blogs and regular e-news updates and newsletters here (this link will take you away from our website).

You can read Kate’s very moving poem below. If you are inspired by this piece, please send us your work at dementiacarervoices@alliance-scotland.org.uk by Monday 30th April.

Your poetry really can make a difference to other people living with dementia.

Only a person with dementia truly understands…

That speaking or getting dressed to go out is like a major exam

What running on less than empty feels like

The fear and guilt felt due to dependence

The sadness and grief of those things we can no longer do

Or the memories we can no longer recall

Only a person with dementia

Understands the loneliness of dementia

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