Over the last six months, WHCA has provided space at West Hill Hall for two Dementia Friends sessions and during the Festival a performed reading of a very moving play was presented by its author Brian Daniels, Kate Dyson and other professional actors at the Friends Meeting House. ‘Don’t Leave Me Now’ explores the impact of early onset dementia on two very different families. Rachael Dixey cared for her partner with dementia for seven years. Cindy Toulman visited her husband in his care home every day for 10 years. ‘Don’t Leave Me Now’ was inspired by these two real-life stories. With authenticity, insight and humour, Brian Daniels weaves the strands of these stories together to create a documentary style production, highlighting the emotions, dilemmas and challenges experienced by people affected by dementia. It has been performed over 100 times throughout the country and a shortened version of it can be found on YouTube at youtu.be/Udj1yXuKGD4.
The performance at the Friends Centre was commissioned by the recently formed Brighton and Hove Dementia Action Alliance as part of Dementia Awareness Week in May. One of the objectives of the Alliance is for Brighton & Hove to be recognised as a Dementia Friendly Community, and they have produced the following information, taken from ‘The Dementia Whisperer – Scenes From the Frontline of Caring’ by Agnes B. Juhasz.
In a dementia-friendly world, everyone – shop assistants, newsagents postmen/women, pharmacists – would have a basic level of understanding of dementia, its signs and symptoms, and the different ways of managing communication with people who are affected. Anyone living with dementia would feel safe to go out and they would not necessarily need a guardian with them as everyone around would be a friend, or a friendly face, a helper who would always have a smile and be able to give that little ‘push’ when needed.
If, for instance, they forgot where they had wanted to go, there would always be someone who would try and find out by asking direct, simple questions. People with dementia would be able to go out to buy milk, post their letters and do every-day small things that we all do independently without any trouble. Within their local community it would be impossible to get lost, because everyone would know where they lived and there would be someone on every corner to give them directions, or accompany them home.
This description of a dementia-friendly world where people living with the condition can do things by themselves, and where the environment almost invisibly protects them with lots of love and support, offers quality of life. It seems a utopian ideal, but there are increasingly encouraging reports about local communities where this is a reality and entire villages are involved in dementia care, for example in Japan and the Netherlands.