An Australian research team is currently developing a training toolkit to support staff and caregivers to talk about issues of death and dying with adults with intellectual disability.
The project, called Dying To Talk, aims to facilitate discussion to allow those with intellectual disability to properly comprehend death – whether their own or that of a loved one – and help them receive adequate advance care planning and make decisions around things such as organ donation and funerals.
The study, funded by the Australian Research Council, began in 2013 and is based on research from the University of Sydney that has been conducted in partnership with the Lorna Hodgkinson Sunshine Home. The toolkit is currently undergoing trials that will be evaluated by 2016.
Michele Wiese, a lead researcher on the project from the university, said that care workers were often either not having conversations about death with clients or having them too late, such as when they have already developed a palliative condition. She said the issue is not as simple as inadequate training, but that social taboos about death in general meant that staff often found the conversation difficult to broach.
“We found caregivers were protecting people with disability from those conversations, thinking that they were doing the right thing, that people with an intellectual disability might not be able to cope or it might upset them,” said Dr Wiese. However, these attitudes and talking about death in an abstract way may do more harm than good.
“There’s research to demonstrate that people with disability might have ongoing mental health problems if in fact they don’t understanding dying,” she said.
Initial findings from the project have shown that while those with intellectual disabilities may have some understanding of death, it is usually not comprehensive. Quite often, they struggle with the concept that death is permanent and, most worryingly for Dr Wiese, they often don’t understand death is universal and will eventually happen to them.
“We know that people with intellectual disability have to have repeated opportunity to learn about these things in order to grasp an understanding,” said Dr Weise. “The really important emphasis for the project is that these conversations happen when people with an intellectual disability are well, that they happen in natural, everyday contexts and that they happen often.”
Dr Wiese said the importance of advance care planning for those with intellectual disabilities will only heighten as the population ages and their life expectancy increases. Those with intellectual disabilities can now often outlive their parents and are living long enough to develop aged-related diseases, such as respiratory conditions, stroke, cancer and dementia.
“If they’re going to face that prolonged dying, then they need to know about it,” said Dr Wiese.
She said the toolkit may be applicable to other cognitively impaired populations, such as those with dementia and brain injury.
“What we found was not only were there a lack of conversations happening about death with people with intellectual disability, but they weren’t happening right across the board,” said Dr Weise.
“We know that those who reside in aged care facilities probably want to have these conversations because they’re facing it. I think there are real implications for the ageing agenda, regardless of whether you have an intellectual disability or whether you don’t.”
For more information visit the study website
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