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Mind the Gap! Respite care and transition to permanent residential care for people living with dementia and informal carers

Researchers: Claudia Meyer, Xanthe Golenko, Judy Lowthian
Study population: Residential aged care
Funding support: Dementia Centre for Research Collaboration

People living with dementia often have specific care needs that are provided (mostly) by informal carers (that is, family and/or friends). Respite care is a critical aspect of care planning that must be introduced into the care planning process as early as possible. Respite can be defined as a pause, or an interval of rest, from the duties of caring, but doesn’t necessarily require a physical distancing from the person living with dementia. Early introduction of respite is critical, so that the person with dementia understands the importance of it for their carer and assisting with acceptance of it for the benefit of both parties. There may come a time, however, when the physical and/or emotional demands of caregiving are no longer manageable, hence the importance of supportive and meaningful residential respite care with/out transition to permanent care. For the carer, transition of a person living with dependency to permanent care, can be laden with a combination of guilt, confusion and relief, but this will vary from person to person. This project will co-design a new and novel approach to day respite services, temporary residential care and transition into permanent care if required in conjunction with people living with dementia and their carers, and residential care staff and their management.

This project is exploratory and, as such, it is unclear what the exact approach will look like. Hence, the project is designed to generate ideas on what might work, rather than testing a known intervention. A prototype program will be generated from the codesign sessions, followed by testing of assumptions related to the program:

  • What might work?
  • What might not?
  • Why not?
  • How can we make it better?