TY - JOUR

T1 - Adaptation of an eHealth Intervention: iSupport for Carers of People with Rare Dementias

AU - Naunton Morgan, Bethan

AU - Windle, Gill

AU - Lamers, Carolien

AU - Brotherhood, Emilie

AU - Crutch, Sebastian

PY - 2023/12/28

Y1 - 2023/12/28

N2 - ‘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 informingadaptations 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 specialisedresources 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.

AB - ‘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 informingadaptations 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 specialisedresources 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.

KW - rare dementia

KW - ehealth

KW - internet

KW - Caregiver

KW - carer

KW - supportive intervfention

KW - adaptation

KW - iSupport

U2 - 10.3390/ijerph21010047

DO - 10.3390/ijerph21010047

M3 - Article

VL - 21

JO - International Journal of Environmental Research and Public Health

JF - International Journal of Environmental Research and Public Health

SN - 1660-4601

IS - 1

M1 - 47

ER -