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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

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Page 1: 1 Involving people with dementia in the development of AT Guide – an online tool to support decision making around assistive technology Nada Savitch, Innovations

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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

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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

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www.atdementia.org.uk

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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

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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:

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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

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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

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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

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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

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Some methods

• Individual semi-structured interviews

• Focus groups

• Reviewing existing information sources

• Card sorting

• Think aloud

• Paper prototypes

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Our findings

• Getting over the stigma

• Use of language

• Use of images

• People’s real experiences

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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”

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Language is important

• “Wandering”

• “Forget”

• “Sometimes/usually/often”

• Clear questions

• Exact words

• Meaningful examples

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The importance of language

Have you ever got lost?

Are you worried about getting lost?

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Using images

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“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?”

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Real experiences

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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]