Engaging young people on the dementia journey

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Piers Harrison
5 years ago
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1 Engaging young people on the dementia journey The benefits of intergenerational exchange Diana FitzGerald

2 ocial inclusion: he journey so far. Who do we include? People with dementia Families: Spouses and adult children Workforce

3 ocial inclusion: he journey so far. Who do we exclude? Families: grandchildren Other young people Friends and companions of people with dementia General community; banks, supermarkets, hairdressers, taxi drivers

4 hy Social inclusion: The dementia epidemic is bigger than us People with dementia want to be engaged within their communities for as long as possible Our communities grow through caring for each other.

A young person s experience of dementia Memory; excerpts from a poem by Rachael Jessup. Then Year 12 I remember being young and small and reaching up to press the doorbell.

5 A young person s experience of dementia Memory; excerpts from a poem by Rachael Jessup. Then Year 12 I remember being young and small and reaching up to press the doorbell. The cheerful melody floats through the house. And here he comes, a stiff old man who still has time to dance his way to the door for a child I remember him loving without knowledge, without reason, without memory of why he should. He loved and we loved him for it.

6 Sophie Pieters-Hawke Our family is lucky enough to live next door to Nanna, so I ve been witness to many of the ups and downs, funny and confronting aspects of the disease. Nanna and I have our own personal repertoire. She is affectionate, teasing and sometimes entertaining. My personal favourite is when she looks me in the face and says. Gosh aren t you a looker, and I say Well I ve got good genes Then we both giggle and cuddle. While the tough times might be tough, its moments like these that ensure that I would rather be involved than not. Recognising the roles that young people can play is part of including them in the journey.

7 Sophie Pieters-Hawke An Australian Government funded project helping Australians with dementia and their carers

8 geing & Changing: n Educational Resource about Dementia for Young People Completed April 2007 Funded by the Australian Government under the Dementia Community Support Grants Program

9 Rationale for the project Lives of 1,000,000 Australians affected by dementia Many of those children and young people Young people want to be involved Children and young people often on the edge of the journey Children and young people invaluable in the relationship with the person with dementia School context for learning is familiar

10 Rationale for the project Extend conversation across the whole community. Youth to old age Engaging those previously excluded on the journey Altering the looking glass New perspectives

11 Story books

12 Teachers Guide

13 Papa An Australian Government funded project helping Australians with dementia and their carers

14 Fact Sheets

15 Initial Evaluation Sent with kit n returned = 55 Rating scale 1-10 for Usefulness Orientation Understanding links to curriculum Recommendation to other teachers

16 Initial Evaluation Rating between 8 and 10 Usefulness 87.6% Orientation 100% Understanding links to curriculum 93.8% Recommendation to other teachers 93.6%

17 Evaluation - Things that teachers liked Provoked discussion Stimulated sharing experiences Taboo subject made easy to explain Linked theory to real life

18 18 months on. How is the kit being used? 40% response to survey Making memory boxes. Memory boxes as time capsules Stories to stimulate discussion Leading up to grandparents day Preparation for Community Services placements/ buddy programs

19 18 months on. How is the kit being used? Health and Human Development Yr 11& 12: Issues affecting families. Discuss purpose of the kit Library resources for school families affected A puppet show about dementia for the community I forgot what I was going to say

22 ngaging young people on the dementia ourney. Some innovations ACF s schools partnerships Lawn bowls Traditional games Listening to reading Music performances Walking together with pets

23 Into the future Multi media web based interactive resource Chat room for kids AAV website Increase secondary level resources Links to the curriculum nationally Adaptation for a range of community contexts

24 ocial inclusion: he journey so far. Where are we now? Families: grandchildren Other young people Friends and companions of people with dementia General community; banks, supermarkets, hairdressers, taxi drivers

Emma Miller, University of Strathclyde

Emma Miller, University of Strathclyde Work with health partners in Norway since 2012 Work by SPRU at York University (from 1996) influenced Scotland and Wales; direct joint working since about 2007 Work