A recent two day event arranged by Dementia Research Champion Chris Roberts brought together people living with dementia and a range of others working towards a more dementia inclusive and educated society in North Wales.
The Arts and Dementia
Professor Bob Woods gave an excellent talk on the Arts and Dementia. He described the range of arts-based activities developing nationally and internationally. He also discussed the benefits of providing meaningful activities for people living with dementia and the broader effects on families, practitioners and the general public. The recent practical guidance by the Alzheimer society on how Arts venues can be dementia friendly and the role of the arts in dementia friendly communities was also shared. The delegates were also invited to join the Dementia and Imagination research team in a themed workshop in the afternoon where the art work was shared and discussed.
While our research is very much focused on the potential of art to help people with dementia, it was helpful to learn more about the wider context for people living with dementia. Among the helpful perspectives here were:
The challenges for young carers
Another highlight from this event was a touching presentation by Chris Roberts’ 17 year old daughter Kate. She described how difficult it had been for her to get support and understanding when her father (and ‘hero’) was diagnosed seven years ago. The lack of understanding and awareness she has experienced from teachers and school support workers was truly sad and although she searched for information on the internet she struggled to find information for young carers. As she celebrated her 18th her father proudly stated she would be going in to schools as a Dementia Friends champion to raise awareness and understanding.
The need for authentic rehabilitation
An international perspective came via a message from Kate Swaffer, Chair of Dementia Alliance International based in Australia. She described how she has learnt to manage her symptoms as disabilities and developed strategies. She emphasised the need for authentic rehabilitation such as exercise, balance, access to speech and language therapy. She discussed the need for a Social disability pathway of support for people post diagnosis for activities of daily living. Kate also talked about the need for dementia to be included as a recognised disability to ensure basic human rights are preserved.
Awareness, Accepting, Adapting and Avoiding
Finally Agnes Houston gave a talk on the importance of sensory and emotional issues to be discussed and kept in mind rather than just focusing on memory. Agnes described how an informal chat at a conference between others living with dementia evolved to interviews with 24 people describing how it affects their senses. The four themes identified from the interviews were: Awareness, Accepting, Adapting and Avoiding. The booklet published as a guide has been immensely popular and she invited everyone to read it and ‘if you have the expertise please take action’.
The two days ‘Meet-up’ were facilitated by Fran and Pam from Working with Not To. and we look forward to seeing their report from the discussions. Hopefully this is the start of a more informed and dementia inclusive North Wales.