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

Bethan Naunton Morgan, Gill Windle, Carolien Lamers, Emilie Brotherhood, Sebastian Crutch

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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) Codesign 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.
Original languageEnglish
Article number47
Number of pages19
JournalInternational Journal of Environmental Research and Public Health
Volume21
Issue number1
Early online date28 Dec 2023
DOIs
Publication statusPublished - 28 Dec 2023

Keywords

  • rare dementia
  • ehealth
  • internet
  • Caregiver
  • carer
  • supportive intervfention
  • adaptation
  • iSupport

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