Involving older adults with dementia, hearing and vision problems in research Jahanara Miah Doreen McKee (Research User Group member) SENSE-Cog has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 668648.
SENSE-Cog SENSE-Cog aims to investigate the combined impact of dementia, age- related hearing and vision impairment on patients, and to develop new tools and at-home support that could improve quality of life. SENSE-Cog has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 668648.
SENSE-Cog WP – Work Package Ethics WP7 Patient and Public Voice WP5 Exploration WP1 Assessment WP2 Valuation WP4 Intervention WP3 Management WP6 3 SENSE-Cog has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 668648.
Model Research User Groups Evaluation 4 SENSE-Cog has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 668648.
Why involve people with dementia? ● Reflects the target population of SENSE-Programme ● Within dementia research specifically, there is increasing interest and awareness of the need for Patient and Public Involvement. ● People living with dementia and their care partners have the right to contribute to research (Alzheimer Europe) 5 SENSE-Cog has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 668648.
Who was involved? Identifying needs • Person with dementia • Carer Hearing Combined Vision or triple impairment Dementia Support and learning needs form 6 SENSE-Cog has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 668648.
What we have done - Vision Visual Aids Use Visibility and audio Black print strategies to Sans serif and recording of on yellow verbalise positioning font at 16 session/ paper some of the of trainer notes visual cues 7 SENSE-Cog has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 668648.
What we have done - Hearing Balance verbal Accessible explanations Preferential small room with with visual Speak in a clear One person to seating acoustic quality prompts to and audible speak at a time arrangements and different reinforcing tone of voice light settings auditory information 8 SENSE-Cog has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 668648.
What we have done - Cognition Clear Photographed Focused on Brief and de- instruction, Interactive discussion the task. brief time understanding notes Parking lot re-cap SENSE-Cog has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 668648.
Link to video here… Doreen SENSE-Cog has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 668648.
Challenges Aligning the work around researchers needs Continuity of RUG membership • Co-morbidity / chronic illness • Deaths • Dropping out • Lacking capacity Recruitment of new RUG members • Recruitment drive • Resources to train and orientate new members to the RUG role 11 SENSE-Cog has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 668648.
What did we learn? 12 SENSE-Cog has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 668648.
What did we learn? ● Obtaining diversity within the Research User Groups • Community based approach ● Inclusion challenges • Literacy • Social groups 13 SENSE-Cog has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 668648.
Acknowledgements – Thanks! Public Programmes Team SENSE-Cog Team Patient and Public Voice Coordinators Maria Passa (Athens) Valeria Manera (Nice) Pavlina Charalambous (Nicosia) Research User Group members Doreen McKee (Research User Group member) Funders Europeans Union’s Horizon 2020 research and innovation programme 14 SENSE-Cog has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 668648.
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