“They rush you and push you too much… and you can’t really get any good response off them”. This was just one of the family member comments from recent Griffith research regarding the acute care of their loved ones with dementia.

The first-of-its-kind study examined the family involvement in care of people with dementia in acute care and overwhelmingly, found a significant need for an increased focus on the family as a resource to improve communication and the care of people in this group.

Just published in the Australasian Journal on Ageing, the study sought to explore the role and needs of the family carer across acute care settings.

Funded by the Dementia Collaborative Research Centre — Carers and Consumers, 30 families and 30 acute care staff were interviewed from across Queensland, Victoria and Tasmania.

“The family member with a relative with dementia is often in the critical role of the proxy decision maker,” says Professor Wendy Moyle, the lead author from Griffith University’s Menzies Health Institute Queensland. “Such a role becomes even more important when the person with dementia is acutely ill and they often are even more confused by the acute care environment.

“Many of the families that we interviewed believed their role was to provide emotional and physical support to their family member; however they felt that there was often a barrier to providing this support with medical and nursing staff often unaware of the needs of the older patient with dementia.

“Although the family member is in a position to inform health professionals of the needs of the person with dementia unfortunately they are often left out of the discussions and communication about care provision.”

A resource to improve relationships

Families felt they were not only often being ignored, but that they could have been used a lot better as a resource to improve the relationship between their relative and medical and nursing staff. Family members’ requests for a time to speak with medical staff was often ignored, or even worse they waited for hours only to be told they could not be involved in discussions about the care of their family member due to privacy issues.

“It is clear that questions remain regarding the management, needs and preferences of people with dementia in acute care, with care of this group presenting special challenges.

“Given the potential of family carers to enhance the care experience of the person with dementia, improving our knowledge of family carer involvement during an episode of acute care hospitalisation is a priority,” says Professor Moyle.

This study indicates that family carers want to be involved in the acute care of their family member and that the time is ripe for targeted family involvement in interventions to improve acute care of older people with dementia.