John Killick continues his series of articles for the Australian Journal of Dementia Care (AJDC), exploring the history of dementia through the stories of individuals, and I feel thrilled and honoured by his review.
John has reviewed my first book on dementia, What the hell happened to my brain? and Christine’s second book Dancing with Dementia, and highlighted our very similar journeys of advocacy. His article was introduced like this:
“Parallel with the development of theory and practice in psychosocial approaches to people with dementia by professionals has been the contribution made by people with the condition themselves. This has proceeded at a slower rate, because of the necessity to convince society that they had something of value to say.“
I’m very happy that now, many people with dementia are speaking up, and not surprisingly we all have a lot to say, and some are uncomfortable with what we are saying, perhaps even our right to say it out loud as too often, we have not had a truly authentic voice. As Professor Tom Kitwood said, meeting one person with dementia means exactly that, and no one experience of living with dementia, even of the same type, is the same for each individual. Historically as John says, people without dementia have been our voice, and it is becoming more and more clear that many of their beliefs about the experiences of living with different are costly different to our actual experiences.
John said of Christine’s exceptional book and public speaking:;
“The first part of Dancing with dementia chronicles these life-changing events. The rest of the text constitutes a guide for people with the condition and their carers on the needs Christine has identified from the many meetings and the correspondence she has had, and advice on how these can be met. Just as her first book contains essential information for all those interested in dementia (largely concentrated in pages 70 to 93), so this second one has as its kernel an outline and agenda for progress in pages 89 to 166. This fulfils effectively the book’s subtitle My story of living positively with dementia.“
Christine’s willed transformation into a spokesperson for people with the condition is impressively accomplished. It allows her to adopt ‘us’ in her pronouncements rather than ‘me’, as in the following excerpt from the book:
“How you relate to us has a big impact on the course of the disease. You can restore our personhood, and give us a sense of being needed and valued. There is a Zulu saying that is very true: ‘A person is a person through others.’ Give us reassurance, hugs, support, a meaning in life” (Bryden 2006 p127).”
He very generously wrote about my book and advocacy;
“The scope of Kate’s book is beyond that which anyone else with dementia has attempted. She reflects upon loneliness, guilt, driving, aged care, writing and advocacy (thoughts on some of these subjects have appeared in this journal).There are two chapters (pages 83 to 102) on the perspective of the younger person. A lengthy discussion on grief and loss (pages 109 to 134) is particularly valuable. She has added to the vocabulary with which the subject can be discussed. ‘BUBs’ is ‘Back-up Brains’, proposed as an alternative to ‘carers’. Her most significant innovation is the concept ‘Prescribed Disengagement®’, which she sees as a result of how dementia diagnoses are delivered:
“(It) sets up people with dementia to become victims or sufferers, their partners to eventually start behaving like martyrs, and to take over for the person diagnosed. It sets up people with dementia to believe there is no hope, there are no strategies to manage the symptoms of dementia, and more importantly that it’s not worthwhile trying to find any. It negatively impacts self-esteem, a person’s finances, relationships and the ability to see any sort of positive future” (Swaffer 2016 p160).”
Proponent of change
Kate has been equally active as a proponent of and debater for change. This has involved her in setting up and promoting organisations which enable the voices of people to be heard. In this Kate was furthering the development which had already begun in 2000. DASNI was the ground-breaker here, but it allowed family carers into membership too. In 2014 Kate was one of seven founding members who set up Dementia Alliance International (DAI) as an organisation exclusively for people with the diagnosis. The first of the national groups, on which all later ones have been modelled, was The Scottish Dementia Working Group (SDWG), established in 2002. Kate was instrumental in bringing into being the Alzheimer’s Australia Dementia Advisory Committee in 2014.
It is impossible to overestimate the significance of this movement. For too long the history of dementia was the preserve of specialists, who only consulted family and professional carers over the nature of dementia and how its effects might be ameliorated. At last a glaring omission has begun to be rectified: the term ‘nothing about us, without us’, is truly being heard.”
The full article published her with permission, is downloadable here AJDC Aug-Sept 2016 pp7-8 Swaffer
This article was first published in the Australian Journal of Dementia Care(www.journalofdementiacare.com) Vol 5 No 4 August/September 2016. Reprinted here with the permission of Hawker Publications Australia Pty Ltd.