Family involvement needed in dementia care

THE FAMILIES of people with dementia need greater involvement in decision making and the care of their family member.

This is the finding of a first-of-its-kind survey by Griffith University which found there was a "significant need" for an increased focus on the families as a resource to improve communication and the care of people with dementia in acute care.

“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’s Menzies Health Institute Queensland.

“Such a role becomes even more important when the person with dementia is acutely ill and they are often 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."

Professor Moyle said that health professionals often left family members out of discussions about the care of the person with dementia.

“They rush you and push you too much... and you can’t really get any good response off them”. An interviewee’s comments from recent Griffith University-led research which examined the family involvement in care of people with dementia in acute care

The report said 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.

The study, published in the Australasian Journal on Ageing, was funded by the Dementia Collaborative Research Centre – Carers and Consumers.

It involved interviews with 30 families and 30 acute care staff from across Queensland, Victoria and Tasmania.