Decision-making experiences of family members of older adults with moderate dementia towards community and residential care home services: a grounded theory study protocol

Lisa Pau Le Low, Lai Wah Lam, Kim Pong Fan

Caring and supporting older people with dementia have become a major public health priority. Recent reports have also revealed a diminishing number of family carers to provide dementia care in the future. Carers who are engaged in the caring role are known to bear significant psychological, practical and economic challenges as the disease advances over time. Seemingly, evidence indicates that the burden of care can be relieved by formal services. This study aims to explore decision-making experiences of family members of older adults with moderate dementia towards the use of community support (CS) and residential care home (RCH) services. A large multi-site constructivist grounded theory in a range of non-government organizations and a private aged home will frame this Hong Kong study. Purposive sampling will begin the recruitment of family members, followed by theoretical sampling. It is estimated that more than 100 family members using CS and RCH services will participate in an interview. The process of successive constant comparative analysis will be undertaken. The final product, a theory, will generate an integrated and comprehensive conceptual understanding which will explain the processes associated with decision-making of family members for dementia sufferers. Deeper understanding of issues including, but not exclusive to, service needs, expectations and hopes among family carers for improving service support to serve dementia sufferers in CS and RCH services will also be revealed. Importantly, this study seeks to illustrate the practical and strategic aspects of the theory and how it may be useful to transfer its applicability to various service settings to better support those who deliver formal and informal care to the dementia population.