ESR10

Use of technology in disclosure of dementia by the diagnosed individual to their social networks

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United Kingdom United Kingdom University College, London

Early Stage Researcher (ESR10)

ESR10: photo of Gianna Kohl

Gianna Kohl

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Supervisor(s)

 

Dr. Georgina Charlesworth

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Dr. Katrina Scior

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Hello, my name is Gianna. I completed a BSc in Applied Psychology at Saxion University of Applied Sciences and a MSc in Clinical Psychology at the University of Twente, both in the Netherlands. For my master’s thesis, I worked with people with dementia to test the usability and feasibility of a newly developed tablet-based app.

During my studies, I did a clinical internship at the Charité in Berlin working with mothers with postpartum disorders. Before that, I became a certified medical assistant and worked at a psychiatric practice in Germany.

I really enjoy working with elderly people and I am looking forward to working as an Early Stage Researcher within DISTINCT. My research interests include psychosocial interventions, specifically for people with dementia, quality of life, eHealth technologies, and human technology interaction.

Start date October 2019
Duration 36 months

Objectives

Before individuals with dementia can fully engage with social activities or wider society they need to be willing to disclose their dementia identity. Many individuals with dementia avoid social activities due to fear of others’ adverse reactions, or stigma. This project:

  1. investigates the use of technology by the diagnosed individual and their family to facilitate disclosure of dementia to their wider social networks. This includes literature review, surveys and case studies of decision-making about disclosure by individuals and family members, sampling to illustrate congruence/divergence of opinions within decision-making units (couples, families) within different societal milieu and ethnic groups.
  2. develops and evaluates an online resource/app for people with dementia and family carers to support decision-making about “who to tell, how and when”, building on a manual devised and
    evaluated in the UK, based on the ‘Honest Open Proud’ programme.

Expected Results

Academic publications: literature review; survey results; evaluation of online decision-making tool/app. Resources: online decision-making tool/app, with illustrative cases to facilitate and support discussion within couples/families. Outcome: prevention of withdrawal of individuals from social activities; maintenance of social networks.

Planned secondment(s)

Two for 3 months each. The first in year one with ADI to look at international concerns about disclosure and the second at UoH to review ethical issues around disclosure.