Young, Alexandra L.
(2020)
A qualitative study of Internet use comparing the experiences of people with physical disabilities and early onset dementia.
PhD thesis, University of Nottingham.
Abstract
People living with Early Onset Dementia and/or physical disabilities face distinct challenges in accessing increasingly digitised services and information. Relatively little is known about how either of these groups access and use the internet on a day-to-day basis, or their plans to negotiate changes in access.
Early Onset Dementia, also called young onset or working age dementia, refers to a diagnosis of dementia given before the age of 65. People in this group usually have considerably different lifestyles and responsibilities compared to people who are diagnosed in their 80s. For example, people with Early Onset Dementia are likely to have more experience of computers and working online. Even so, they and their families may have difficulties in accessing appropriate information and services.
Another sizeable group for whom assistive online access may be highly relevant is people living with physical disabilities. People in this group may be dependent on assistive technologies and interventions to access technology and the internet. However, despite the difficulties that both of these groups are likely to face, relatively little research has been done about any of their day-to-day activities’.
This thesis collects and compares the experiences of two groups of participants through both the literature and qualitative research: Group 1, people living with physical disabilities; and Group 2, people living with Early Onset Dementia and their family members. A comprehensive literature search was conducted into internet use and service access by members of these two groups, and data were collected in semi-structured interviews and online questionnaires.
Group 1 comprised of 15 interviews with people living with physical disabilities across Nottinghamshire who were recruited with the assistance of Nottinghamshire County Council (NCC). In addition to the interviews, 29 online questionnaires were completed by people with physical disabilities living across the UK. The data were analysed using an iterative coding approach to draw out the main themes and inform the approach used with Group 2.
Group 2 also used an online questionnaire, which had 19 participants, and semi-structured interviews to collect data. The interviews used a number of different online recruitment methods to recruit 10 people living with Early Onset Dementia and eight family members from across England. The data were also analysed using an iterative coding approach, followed by thematic analysis informed by the analysis and results of Group 1. These themes were then compared to posts from the Alzheimer’s Society Talking Point forum by using word frequency analysis and word searches within the dataset.
The experiences of the two groups were then compared to draw out the similarities and differences between the two, with the main combined themes centring on online access, support, online information, and digital legacies. All these themes indicated similarities in how people with Early Onset Dementia, their family members, and people living with physical disabilities use the internet and online resources to find information and support.
There were also differences between the groups, especially between the group of people diagnosed with Early Onset Dementia and people with physical disabilities. The former group had far more limited involvement in searching for health-related information than the people with physical disabilities, or indeed their family members
The themes also highlight the need for further research on both of these groups regarding the appropriateness of a ‘digital first’ approach to local authority services and the nature of support needed by these groups to retain online independence. As online access is not yet universal, it is premature for local authorities to plan a programme of digitisation and assume that service users will be in a position to cope with this change. These themes also underline the need for more up-to-date and appropriate post-diagnostic information, and guidance on which sites or services are safe or trustworthy.
Significantly, the findings also draw attention to the need to prompt conversations about changing access needs and the nature of digital legacy, both between family members and between service users and professionals. This includes not just what people think a digital legacy is, but also plans they may want to put in place for online accounts and digital assets, and when this should occur.
Further research is needed with larger cohorts of both people with Early Onset Dementia and people with physical disabilities who are active online to understand the changing patterns of internet use and dependence. This will help to ensure that people with Early Onset Dementia or physical disabilities can receive appropriate and accessible online services and support.
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