Online services and support for those with early onset dementia
Research type
Research Study
Full title
An ethnographic approach to understanding the significance of an existing digital presence for service use by people diagnosed with working age dementia and their families.
IRAS ID
198200
Contact name
Tom Dening
Contact email
Sponsor organisation
University of Nottingham
Duration of Study in the UK
1 years, 0 months, 16 days
Research summary
With the internet becoming increasingly part of everyday life, its continued use should be assumed for people diagnosed and their families. It can provide a significant amount of information and support for both the individual and their family, such as access to relevant support circles. This is alongside the daily management tasks online, such as managing an online presence on social networks or through email, online banking, or accessing information and services needed. A number of people diagnosed with working age dementia have become present on Twitter and other blogging sites, sharing their daily experiences of trying to ‘live well’ with dementia, as well as sharing links for support services and condition related information. This illustrates the need for research into this area and to assess the impact of this online information on individuals and their families following a diagnosis of working age dementia.
This study is a qualitative study of people with working age dementia and their families to assess the use of internet resources, and how this changes as the disease, and time, progresses. It will take place over a year period, with multiple interviews to allow for snapshots from each family group as their own situation changes. This approach should allow for a far more inclusive view of the family as a whole whilst also keeping the individual and impact of the dementia at the core, as well as allowing for a more accurate reflection of the experience through several interviews.
REC name
East of England - Cambridge Central Research Ethics Committee
REC reference
17/EE/0085
Date of REC Opinion
28 Mar 2017
REC opinion
Unfavourable Opinion