A first of its kind electronic discussion tool co-designed by people with dementia, carers and health professionals is enabling people with dementia living in the community to have greater choice and independence.
The tool was developed through a process involving 83 interviews with people with dementia, carers, healthy older people, Registered Nurses and Bolton Clarke employees in a 12-month Bolton Clarke Research Institute project.
It uses a conversational approach and is supported by 12 pictorial flashcards to prompt discussion in areas including health, food, grooming and hygiene, finance, socialising and work, leisure activities, chores, mobility transport, changing behaviours and planning for the future.
Bolton Clarke Research Institute researcher Marissa Dickins said despite the implementation of consumer-directed care and the enshrinement of the right to autonomy in Australia’s Aged Care Act, health professionals and services remained risk-averse.
“Frequently, there is pressure to admit a person with dementia to residential aged care,” she said.
“There is little guidance to help health professionals provide services that address client choice while mitigating unacceptable risk.
“Family members and carers of people with dementia deal with practical, day-today questions like whether going on an unaccompanied walk is a risk.”
“I still want independence and autonomy,” one woman said.
“My husband used to struggle with that a lot – occasionally I probably selectively chose to forget that I shouldn’t cook on my own, because it’s frustrating.”
To support greater choice, the tool supports structured conversational discussions around risk and strategies to address concerns that can be built into care planning.
Focus groups identified cooking, medication management, falls, driving, behavioural and psychological symptoms of dementia, social isolation and dressing as key areas of risk.
Using the flashcards provides visual and tactile ways for people to engage in discussions, which can be completed over multiple sessions.
The aim is to gather information to inform care, discover what issues and activities are important to a person, what issues the person or their carer or health professionals believe could become risky and discuss strategies to assist the person and determine whether a referral to a senior nursing specialist or social worker is required.
An advisory group including consumer advocates, mental health and geriatric medicine experts, a human rights lawyer, quality and risk co-ordinators and a Victorian Department of Health representative supported development of the finished product, which received positive feedback from people with dementia and their carers.
The tool will now be incorporated into Bolton Clarke’s At Home Support services for people with dementia.
A paper outlining the project was published in BMJ in November and is available here