Reimagining respite and transition care for people living with dementia: A person-centred, rights-based approach

An article written by Dr Claudia Meyer, Senior Research Fellow, Bolton Clarke Research Institute, Melbourne Australia

Dementia is a life-limiting condition affecting over 400,000 Australians. Although dementia care is delivered by professionals, most care is provided by family and friends. Carers often face significant physical and emotional challenges, highlighting the need for better support. While respite care is typically seen as a short break for carers, it also helps restore wellbeing for both the carer and the person with dementia.

Transitions - whether to respite or permanent residential care - can bring complex emotions like guilt, relief, and loss of identity, and for the person with dementia, a sense of lost dignity and control. As the World Health Organization’s global action plan emphasises, people living with dementia and their carers have the right to live with dignity, autonomy, and equality.

My fellow team members – Dr Xanthe Golenko, Dr Ron Sinclair and Professor Judy Lowthian – and I set out to understand how and why respite and transition care programs work. We used a realist approach to our research to help us better explore real-world experiences that don’t always fit traditional models of research. You can read more about how we went about our research here: Transition for people with dementia from day respite services to permanent residential care: A realist synthesis

Three program theories emerged, offering insights at different levels—big-picture (macro), organisational or community (meso), and individual or day-to-day (micro).

At the heart of it, making systems work better together - through collaboration and coordination - is key. We need sectors to come together in a well-organised way to connect hospital care, community health, social support, and residential aged care. The outgoing Aged Care Act (1997) shifted residential care from an institutional model to person-centred care, giving older people more choice and flexibility. The incoming Act (2025) builds on this, placing older people’s rights at the centre. While it’s natural for organisations to have their own policies, truly seamless, rights-based care depends on skilled staff and adequate funding.

At the organisational level, shared decision-making is vital for successful respite and permanent care transitions. This involves the person with dementia, their carer, and staff, with approaches tailored to the complexity of the decision and cognitive ability - ranging from independent to supported or substitute decision-making. For this to work, consistent, well-trained staff and a safe environment are essential. Moving into permanent care is a major life event, often triggered by crisis, so both emotional and physical needs must be addressed.

The care environment also matters - not just its design, but how it supports dignity and wellbeing. It’s about creating spaces that feel good and encourage meaningful interaction.

Bringing all this together isn’t easy, but when organisations commit to person-centred care with a skilled, integrated team, they can make a real difference - whether offering a break or supporting a major life change.

The third program theory focuses on trust, autonomy, and helping individuals make sense of their experiences. Valuing the personal history and identity of people with dementia is essential. Strong, respectful partnerships between care providers, people with dementia, and their carers are key. These relationships thrive on mutual respect and shared knowledge. Culturally safe care also plays a vital role, especially in addressing inequities for Indigenous communities by challenging power imbalances in care settings.

Ultimately, it’s about working with people, not doing things to or for them. Supporting people with dementia - and their carers - through decisions like respite or permanent care can help make a tough experience feel less overwhelming. To illustrate this, at the Bolton Clarke Fernhill site in Caboolture, Queensland, we recently established a respite care model for people living with dementia, embedding it within the residential care home. This approach gives people with dementia and their carers an opportunity to become familiar with the care home and engage with staff. Importantly, it helps to reduce the stigma often associated with residential aged care by fostering positive, supportive interactions in a setting that become familiar and comfortable. Down the track, we hope to replicate and evaluate this approach in other care homes.

Author

Dr Claudia Meyer

Senior Research Fellow

Bolton Clarke Research Institute, Melbourne Australia