Involving older adults with dementia, hearing and vision problems in - - PowerPoint PPT Presentation

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Involving older adults with dementia, hearing and vision problems in - - PowerPoint PPT Presentation

Feb 25, 2023 241 likes •389 views

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 Unions Horizon 2020 research and innovation programme under

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SENSE-Cog has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 668648.

Involving older adults with dementia, hearing and vision problems in research

Jahanara Miah Doreen McKee (Research User Group member)

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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.

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SENSE-Cog has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 668648.

SENSE-Cog

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Management WP6 Exploration WP1 Assessment WP2 Intervention WP3 Valuation WP4 Patient and Public Voice WP5 Ethics WP7

WP – Work Package

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SENSE-Cog has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 668648.

Model

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Research User Groups Evaluation

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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)

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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

Hearing Vision Dementia Combined

  • r triple

impairment

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  • Person with dementia
  • Carer

Support and learning needs form

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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 and audio recording of session/ notes Visibility and positioning

  • f trainer

Sans serif font at 16 Black print

  • n yellow

paper Use strategies to verbalise some of the visual cues

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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

Preferential seating arrangements Accessible small room with acoustic quality and different light settings Balance verbal explanations with visual prompts to reinforcing auditory information One person to speak at a time Speak in a clear and audible tone of voice

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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

Interactive Photographed discussion notes Clear instruction, understanding re-cap Focused on the task. Parking lot Brief and de- brief time

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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

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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

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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?

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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

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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

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