Carers don't stop caring

For a person with dementia, the move from home to permanent residential care is fraught with emotion. For the family carer behind the decision, it is not necessarily any easier.

The Dementia Collaborative Research Centre: Carers and Consumers (DCRC: CC) in the School of Nursing at the Queensland University of Technology (QUT) is currently undertaking a research project to better understand the perspective of the family carer during this tumultuous transition.

In the form of a questionnaire, which participants can complete online in less than half an hour, or over the phone in 40 minutes, the Residential Placement Transitions survey asks carers questions about how they felt during the move and whether they had access to support services.

QUT DCRC senior research fellow and chief investigator of the project Elaine Fielding said carers go through a range of various emotions as they assist their loved one into their new home.

“They experience grief, regret and also relief. There’s a lot of conflicting emotions and that’s just the reality of it,” she said.

Ms Fielding said that because of their own commitments, family carers are often left in a position where they must relinquish responsibility of a person they know, and love, better than anybody else.

But while family carers may best understand the personality traits, preferences and idiosyncrasies of a particular person with dementia, Ms Fielding said they can be ill-equipped to deal with the some of the more the more adverse symptoms of the condition, such as incontinence, especially if they are juggling a full time job, or parenting.

The responses from the questionnaire so far suggest more pre-planning would ease some of the stress associated with the transition.

Ms Fielding said the decision is often made at a crisis point when emotions are already running high.

“One of the most common responses from the questionnaire has been: ‘I wish I had started planning sooner’,” she said.

Communication between facility staff and the former carer also appears to be an issue.

“They want a better sense of what is going to happen to their loved one after they move in,” Ms Fielding said.

Investigators hope to draft a summary report at the end of this year with recommendations to the government and organisations for support services to help carers before, during and after the transition.

“People don’t always want to reach out so we need to make the information accessible.”

The survey is open now until the end of August. If you would like to participate, follow this link or phone 07 3138 3852.