Adaptation of an eHealth Intervention: iSupport for Carers of People with Rare Dementias

Bethan Naunton Morgan (), Gill Windle, Carolien Lamers, Emilie Brotherhood and Sebastian Crutch
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Bethan Naunton Morgan: School of Psychology and Sports Science, Bangor University, Brigantia Building, Bangor LL57 2AS, UK
Gill Windle: School of Health Sciences, Bangor University, Fron Heluog Building, Bangor LL57 2EE, UK
Carolien Lamers: North Wales Clinical Psychology Programme, Bangor University, Brigantia Building, Bangor LL57 2AS, UK
Emilie Brotherhood: Dementia Research Centre, Queen Square Institute of Neurology, University College London (UCL), Queen Square, London WC1N 3BG, UK
Sebastian Crutch: Dementia Research Centre, Queen Square Institute of Neurology, University College London (UCL), Queen Square, London WC1N 3BG, UK

IJERPH, 2023, vol. 21, issue 1, 1-19

Abstract: ‘iSupport’ is an online psychoeducation and skills development intervention created by the World Health Organisation to support people with dementia. This project adapted iSupport for carers of people with rare dementias (iSupport RDC), creating a new resource to support the health and wellbeing of this underserved population. The adaptation involved three phases: (1) Co-design methods to generate preliminary adaptations; (2) Analysis of phase one findings informing adaptations to iSupport to develop; iSupport RDC; (3) Post-adaptation survey to ascertain participant agreement with the adaptations in iSupport RDC. Fourteen participants contributed, resulting in 212 suggested adaptations, of which 94 (92%) were considered practical, generalisable, and aligned with iSupport principles. These adaptations encompassed content and design changes, including addressing the challenges of rare dementias (PCA, PPA, LBD, and FTD). iSupport RDC represents a significant adaptation of the WHO iSupport intervention. Its tailored nature acknowledges the unique needs of people caring for someone with a rare dementia, improving their access to specialised resources and support. By extending iSupport to this population, it contributes to advancing dementia care inclusivity and broadening the understanding of rare dementias. A feasibility study is underway to assess iSupport RDCs acceptability, with prospects for cultural adaptations to benefit carers globally.

Keywords: rare dementia; ehealth; internet; caregiver; carer; supportive intervention; adaptation; iSupport (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2023
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