ESR10

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

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United Kingdom	University College, London
Early Stage Researcher (ESR10) Gianna Kohl	Supervisor(s)   Dr. Georgina Charlesworth   Dr. Katrina Scior
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 living with dementia to test the usability and feasibility of a newly developed app. During my studies, I did an 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 am particularly interested in developing and improving technological interventions for people with dementia, and I am lucky that my work with DISTINCT is a combination of these interests.  I am very much looking forward to working with people living with dementia and their carers to explore how technology can support them in sharing the diagnosis with others.
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 the University of Hertfordshire to review ethical issues around disclosure and the second one with Alzheimer’s Disease International to look at international concerns about disclosure.

Dissemination

Protocol:

Gianna Kohl, Mauricio Molinari Ulate, Jem Bhatt, Katrina Scior, Georgina Charlesworth. Factors associated with self-disclosure among people diagnosed with a neurological disorder. PROSPERO 2020, CRD42020192495. Available here.

Publications:

1. Gerritzen, E.V., Kohl, G., Orrell, M., & McDermott, O. (2022). Peer support through video meetings: Experiences of people with young onset dementia. Dementia, 0(0) 10.1177/14713012221140468
2. Kerkhof, Y.J,F., Kohl, G., Veijer, M., Mangiaracina, F., Bergsma, A., Graff, M., & Dröes, R.M. (2020). Randomized controlled feasibility study of FindMyApps: first evaluation of a tablet-based intervention to promote self-management and meaningful activities in people with mild dementia. Disability and Rehabilitation: Assistive Technology, 1-15. https://doi.org/10.1080/17483107.2020.1765420

Presentations:

1. Kohl, G., Scior, K., & Charlesworth, G. (2022, 17-19 October). Main findings of the DISTINCT projects on technology to promote social health [Symposium presentation]. 32nd Alzheimer Europe Conference. Bucharest, Romania.
2. Bhatt, J., Kohl, G*., Dröes, R.M., Muller, M., Scior, K., & Charlesworth, G. (2021, 29 November-1 December). Predictors of discomfort with diagnostic disclosure by people with dementia: A cross-country comparison between the UK and the Netherlands [Quick oral presentation]. 31st Alzheimer Europe conference. Virtual, Utrecht, The Netherlands. (*presenting author)
3. Gerritzen, E.*, Kohl, G., McDermott, O., & Orrell, M. (2021, 29 November-1 December). Peer support through Zoom: experiences of people with Young Onset Dementia [Oral presentation]. 31st Alzheimer Europe conference. Virtual, Utrecht, The Netherlands. (*presenting author)
4. Kohl, G., Molinari Ulate, M., Bhatt, J., Lynch, J., Scior, K., & Charlesworth, G. (2021, November 10-13). Individuals’ decision to disclose a diagnosis of dementia and the development of an online empowerment intervention [Oral presentation]. 2021 Annual Meeting of the Gerontological Society of America. Virtual.
5. Kohl, G., Molinari Ulate, M., Bhatt, J., Scior, K., & Charlesworth, G. (2021, July 26-30). Factors associated with disclosing a diagnosis of dementia to one’s social network: A systematic review [Poster presentation]. 2021 Alzheimer’s Association International Conference. Virtual, Denver, USA.
6. Neal, D.P.*, Kerkhof, Y.J.F., Beentjes, K., Kohl, G., Bergsma, A., Muller, M., Zwan, M., Graff, M., & Dröes, R.M. (2020, October 20-22, oral presentation). Proven feasibility of the FindMyApps tablet-based intervention to promote social health in dementia [Oral presentation]. 30th Alzheimer Europe conference. Virtual, Utrecht, The Netherlands (*presenting author)