This project is pioneering the development of a self-assessment instrument to holistically assess impacts on informal caregivers of people living with dementia to inform policy and research. Community-based caregivers have been particularly affected by the COVID-19 pandemic. Social isolation, closure of care facilities and lack of carer support due to the pandemic has left many caregivers lonely, burnt-out, physically vulnerable and at risk of short, medium and longer-term negative outcomes.
This project aims to 1) critically examine and define the needs of caregivers of community-based older adults living with dementia from the caregivers’ perspectives; and, 2) collate the foundation data for the descriptive system of a self-assessment instrument of caregiver needs amenable to economic evaluation.
A systematic meta-synthesis of published, qualitative data, followed by an empirical study, will be used as the methodological framework for this project. A systemic meta-synthesis will comply with the PRISMA principles. PRISMA acts as an evidence-based and systematic approach to data searching and review and acts to achieve consistent reporting and transparency of methods. A descriptive system for the new instrument will encapsulate the critical attributes of needs from the perspective of caregivers.
This instrument will be an essential contribution to dementia-related research, in general, but also potentially unlock additional areas of research for economic evaluation and priority setting in dementia care. It will also contribute to policy and funding decisions related to caregivers in the longer term. The instrument has the potential to set the standard in this area of research, thus raising the profile of GBHI and researchers involved as the leading experts in this field.