Dementia digital platform

Background

It has been suggested that digital platforms can be used to support people living with dementia and their carers, immediately after diagnosis, and that this support could reduce hospital admission and prolong independent living.

However, little research has evaluated the acceptability, safety or usability of such a platform, and no high quality trials have been conducted.

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Aims

To evaluate the acceptability, safety and usability of a digital post diagnostic support platform for people living with dementia and their carers, and to inform the design of a potential randomised controlled trial.

Methods

People living with dementia and their carers will be recruited in the City of Edinburgh from the local memory clinic and Alzheimer Scotland post diagnostic support services within a month of being offered the DDSP.

Questionnaires exploring technological familiarity, mental health and carer-strain will be conducted, and NHS and social-care resource use recorded.

Semi-structured interviews will be conducted with people living with dementia and their carers, and internal metrics of the DDSP analysed.

Mental health and social care professionals will be recruited from local dementia services and their views will be assessed by semi-structured interviews and focus groups.  

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Results

Our analysis revealed that the digital platform was predominantly understood and used by the carers rather than people with dementia, and was used alongside tools and methods they already used to care for their relative.

The platform was interpreted as a tool that may be of benefit to those experiencing later stages of dementia or with physical care needs.

Carers stated that the platform may be of benefit in the future, reflecting a disinclination to prepare for or anticipate for future needs, rather than focus on those needs present at the time of distribution.

Patients with dementia spoke positively about an interest in learning to use technology more effectively and enjoyed having their own tablet devices.

We concluded that the platform was not wholly appropriate for families living with dementia in its early stages. The views of carers confirmed that postdiagnostic support was valued, but emphasised the importance of tailoring this support to the exact needs and current arrangements of families.

There may be a benefit to introducing, encouraging, providing and teaching internet-enabled technology to those people with dementia who do not currently have access. Training should be provided when introducing new technology to this group.

Paper

Digital Support Platform: a qualitative research study investigating the feasibility of an internet-based, postdiagnostic support platform for families living with dementia (BMJ Open, 2018)