Dr Claudia Meyer
Senior Research Fellow
Bolton Clarke Research Institute
Uptake of respite care services by carers and people living with dementia is fraught with stress, guilt, and confusion. Informal carers (i.e., family and friends) are one of the main reasons that people living with dementia can continue living at home, in their community. However, many carers have caring-related physical and/or mental health concerns, facing up to regular negative attitudes and stigma related to dementia. Respite care services are designed to give carers a break from their caring duties, but traditional models often do not meet the needs of carers nor the person with dementia. There are complex emotions associated with respite, ranging from guilt and relief for the carer, and loss of dignity and control for the person with dementia. The recent Royal Commission into Aged Care Quality and Safety highlighted the need for innovative respite care models, acknowledging that existing services are often unavailable, inaccessible and/or unacceptable to the caregiving dyads’ needs and preferences.
Respite care should be more accurately reflected as a mutually beneficial restoration of the dyad, through collaborative care partnerships. [1] Research related to respite care programs is often inconclusive, lacking the necessary depth and rigour to identify key program elements for success. Work underway at Bolton Clarke is unpacking the complex mechanisms that underpin respite care programs, especially considering a person with dementia’s transition from the community +/- hospital, into a day respite program, short stay overnight respite and potential transition into permanent care. These journeys may be carefully planned in advance or occur in response to a crisis (for the carer or the person with dementia). Respite care programs must be able to cater to the diverse needs and situations facing the caregiving dyad.
It is the right of people with dementia and their carers to live a life with dignity and autonomy, manifested through multisectoral collaboration that connects the community, acute care, and residential care sectors. Currently, the system is fragmented and poorly resourced, resulting in a lack of choice and flexibility in quality respite services. Person-centred, dementia-enabling care environments are critical to foster the authentic relationships necessary to promote trust and autonomy in respite care services. Integrating the wider community with residential care homes, through day respite programs and beyond, signals that people with dementia and their carers are valued members of society, reducing the associated negative attitudes and stigma that so often constrain the much-needed restorative break.