Horizon CDT Research Highlights

Research Highlights

An ethnographic approach to understanding the significance of an online presence post diagnosis in people diagnosed with working age dementia and their families.

  Alex Young (2014 cohort)   uk.linkedin.com/in/alexlyoung

Background

Early Onset Dementia is defined as a dementia diagnosed before the age of 65. Although the age divide at 65 is an arbitrary one, awareness is growing of the conditions which can prompt this diagnosis, from alcohol related causes, to traumatic brain injuries and inherited conditions such as Huntington's and Alzheimer's disease. With an estimated 43,000 people diagnosed with working age dementia, a number with potential to grow when including the people who have not yet been diagnosed , a process which can take up to 5 years at the time of writing, there is increasing demand for increased access to appropriate services and information across the UK. While this number is small in comparison to the 876,700 people diagnosed with late onset dementia after the age of 65, their experience in negotiating a rapidly changing medical and technological landscape is no less significant.

Research Gap

This PhD project looks at the impact of early onset dementia on a social and familial level, focusing on the impact on the individual and their family, and the appropriateness of available services and support, rather than on the medical diagnostics and pharmaceutical interventions. For people diagnosed at age 40, who are likely active in some capacity online, whether through bills, banking, social media, or shopping, it is unlikely that this activity ceases at point of diagnosis, and it is my aim to understand how this continuing use is shaped by the progression of their individual diagnosis, and how online resources are being utilised by this group. It is hoped that from this view it will be possible to better understand the needs people have of government and social services and the appropriateness of information sources needed in order to support the family as a whole in this situation, rather than as two distinct parties [1].

Research questions

-What role does online information and support play in the understanding of the diagnosis for both the individual and their family?

-How valuable is online support and information for the individual diagnosed and their family?

Current work

The first half of my PhD research involved working with people living with physical disabilities in Nottinghamshire in partnership with the County Council. Although the main project with people with early onset dementia has not yet concluded, it seems that the trend of increased information seeking and use of social support online is present in both the physically disabled and early onset dementia groups [2,3]. The second, and current focus of the PhD is a study with people living with early onset dementia focusing on their internet use, including how it has changed since diagnosis, and plans they may have made for the management or preservation of their digital legacy at a time when accessing it personally is no longer an option.

This thesis is currently written up with the aim of contributing to the literature on the lived experiences of both people with physical disabilities and early onset dementia, and how these conditions affect internet use and participating in a digitally mediated online life

References

  1. Roach, P., Keady, J., Bee, P., 'It's easier just to separate them': practice constructions in the metal health care and support of younger people with dementia and their families. Journal of Psychiatric & Mental Health Nursing, 19:6, pp 555-562
  2. Miller, L., Bell, R., Online Health Information Seeking The Influence of Age, Information Trustworthiness, and Search Challenges, Journal of Ageing and Health, 24:3 pp 525-541
  3. Leydon, g., Boulton, M., Moynihan, C., Jones, A., Mossman, J., Boudioni, M., McPherson, K., (2000) Cancer patients' information needs and information seking behaviour:in depth interview study, BMJ, 320:7239 pp 909-913

Publications

  1. Young A., Skatova A., Bedwell B., Rodden T., & Shipp V.. 2015. The Role of Accidental Self-Reflection in Wearable Camera Research. IN Proceedings of the 17th International Conference on Human-Computer Interaction with Mobile Devices and Services Adjunct, ACM, 1062–1065. http://doi.org/10.1145/2786567.2794324

  2. Skatova, A., Bedwell, B., Shipp, V, Huang, Y., Young, A., Rodden, T. (2016). The Role of ICT in Office Work Breaks CHI'16, San Jose, CA, USA. https://www.researchgate.net/publication/292152010TheRoleofICTinOfficeWorkBreaks

  3. Young A., Dening T., Greenhalgh C., 2018 The Role of the Internet and Technology in the Well-Being of People with Physical Disabilities IN proceedings The Third International Conference on Universal Accessibility in the Internet of Things and Smart Environments, Smart Accessibility 2018 (PENDING)

This author is supported by the Horizon Centre for Doctoral Training at the University of Nottingham (RCUK Grant No. EP/L015463/1) and Nottinghamshire County Council.