1 involving people with dementia in the development of at guide – an online tool to support...
TRANSCRIPT
1
Involving people with dementia in the development of AT Guide – an online tool to support decision making around assistive technology
Nada Savitch, Innovations in Dementia
Deborah Brooks, Trent DSDC
Stephen Wey, York St John University
2
What we would like to cover today
• The AT Guide concept
• Methods for involving people with dementia in its development
• Lessons learnt about design and engagement
4
5
6
AT Guide concept
• ATdementia website established and useful
But…– People with dementia don’t find traditional
website navigation easy
• AskSara tool – easy to use but not appropriate for people with dementia
• A meeting of minds
7
In 2009 the organisations Trent DSDC in partnership with Innovations in Dementia CIC and the Disabled Living Foundation secure 3 year funding from the Department of Health to develop an guided self-assessment support tool:
8
9
10
11
Topics on AT Guide
• Getting up, washed and dressed
• Making meals and drinks
• Getting out and about
• Keeping busy
• Keeping in touch
• Going to bed and getting up at night
12
Listening to people with dementia
• Tips and advice for other people with dementia– relative merits of different types of assistive
technology– feelings about the ethics of some technologies
• Refine the language used in the guide • Ensure that images used were helpful and not
distracting or confusing• Ensure that the design of the tool was easy to
use
13
People with dementia at the heart of the project
• Member of the reference group
• Informing the focus of the project
• Testing – Language– Questions– Layout– Design
14
Making sure people are involved
• Meetings that suit individuals
• Using existing groups and supporters
• Focussing on people’s strengths
• Using a variety of methods
• Adapting existing protocols
15
Some methods
• Individual semi-structured interviews
• Focus groups
• Reviewing existing information sources
• Card sorting
• Think aloud
• Paper prototypes
16
Our findings
• Getting over the stigma
• Use of language
• Use of images
• People’s real experiences
17
Getting over the stigma
• “Warning not barring”
• “Giving freedom and peace of mind”
• “Try to avoid the bad things”
• “Focus on the positive”
• “Little plastic things to help NOT symbols of your independence disappearing”
18
Language is important
• “Wandering”
• “Forget”
• “Sometimes/usually/often”
• Clear questions
• Exact words
• Meaningful examples
19
The importance of language
Have you ever got lost?
Are you worried about getting lost?
20
Using images
21
“Woman – having her photo taken. Brilliant smile – going down an escalator.
Meeting someone she likes or someone’s talking a photo who she likes”
“Someone out shopping”
“She has dementia, but a life – she’s doing her shopping. It represents the two parts of her brain.”
“It’s a lady – taking something .. You’ve got the same situation here. Use one half – a woman. Is she carrying a trowel? Are those files?”
22
Real experiences
23
Thank you
Help us to improve the tool further:Go to www.atdementia.org.ukClick through to the AT GuideUse the toolComplete the online poll and feedback questionnaire
Nada SavitchInnovations in Dementia [email protected]