Toye, Christine

Background: There is little evidence that outlines how family carers understand the person with dementia's perspective, values and anticipated future needs. Whilst people with dementia should be consulted about their own quality of life and care values, carers – otherwise known as care partners – require such understandings to ensure that the support the person receives into the future upholds their quality of life and is consistent with what they desire.

The ageing global population has seen increasing numbers of older people living with chronic health problems, declining function, and frailty. As older people seek to live out their years at home, family members, friends and neighbours (informal caregivers) are increasingly relied upon for support. Moreover, pressured health systems and shorter hospital length of stay mean that informal caregivers can find themselves supporting the older person who is still unwell after discharge.

Family carers of people with dementia may take on this role without understanding how it will evolve or how to obtain support. Hospitalisation of the person with dementia can not only compound carers’ concerns, but also provides an opportunity for their needs to be addressed.

In Australia, many people ageing in their own homes are becoming increasingly frail and unwell, approaching the end of life. A palliative approach, which adheres to palliative care principles, is often appropriate. These principles provide a framework for proactive and holistic care in which quality of life and of dying is prioritised, as is support for families. A palliative approach can be delivered by the general practitioner working with the community aged care team, in collaboration with family carers. Support from specialist palliative care services is available if necessary.