Technology for meaningful activities
Guidance
When persons with dementia use technology for meaningful activities this may not only impact their own quality of life but also the well-being of their (primary) family carers.
Explanation and example
In the exergaming project, people with dementia were engaged in an exergaming activity or activities as usual in day care centres. We studied the effects on persons with dementia as well as on their family carers. In carers, positive effects were found in favour of the exergaming intervention, i.e. on the carers’ distress related to their relative’s neuropsychiatric symptoms and the carers’ sense of competence (after a three months intervention period).
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Guidance
Effectiveness research into eHealth interventions for community dwelling persons with dementia, often rely on information from and involvement of family carers. As they may already be (over)burdened by their caregiver tasks, participation in effectiveness research may be denied. It will be helpful to think of methods to support informal carers to participate in research.
Explanation and example
In the exergaming project, a bottleneck of participation of couples into the effectiveness study, was the refusal of family carers to participate because they were already (over)burdened. To accommodate caregivers they were offered support in filling out questionnaires and a little present to thank them for their contribution. This seems to have added slightly in the number of participants in our study. Other strategies to alleviate burden of participation in eHealth research may also be considered, like data logging or ecological momentary assessments.
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Health care technologies
Guidance
Internet training programmes for family carers have potential to increase carers’ well-being, to reduce distress, depression and anxiety symptoms and to increase knowledge skills.
Explanation and example
A systematic review (Egan et al. 2018) about online training programmes for family carers reported on two studies in which improvements in depression symptoms were demonstrated, two studies with overall improvements in anxiety and two studies showing reduction of stress symptoms. Good examples of informative websites and internet training programmes for family carers are ‘Mastery over Dementia’, iSupport, ‘iCARE: Stress management eTraining programme’ and the STAR E-Learning course.
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As the INDUCT project manager, most of my tasks have been ‘behind the scenes’. I have been responsible for submitting scientific deliverables, writing reports for the funder, negotiating deadlines and updating the EU Portal. A project manager functions as a middleman between the EC Project Officer, beneficiaries, partners and ESRs.