Dementia perceptions

A study collects opinions and beliefs from staff in RACFs. 

Researchers at the Dementia Collaborative Research Centre: Carers and Consumers, hosted at Queensland University of Technology, are involved in Australia’s first large-scale systematic study of the quality of life of people living with dementia in residential aged-care facilities.

Whilst only about one-third of the total number of people with dementia are living within (RACFs), more than 50 per cent of residents in such facilities have dementia. This group, DCRC: CC director professor Elizabeth Beattie says, is representative of the “most cognitively frail, and thus arguably the most vulnerable, of all those living with dementia” and deserves respect and compassion”.

Quality of life for people living with dementia is becoming an increasing interest worldwide, and Beattie says nurses must have a role in helping improve quality of life for RACF residents.

“In the absence of a cure and with limited highly effective treatment options, care is one aspect of the dementia experience where we can make an important difference,” she says. “In RACFs, residents depend on others for care. And great care – involving engagement, meaningful relationships, compassion, pleasure and joy – is linked to how people perceive their quality of life.”

Nine hundred staff, including RNs, nurse practitioners, personal care assistants, enrolled nurses and more, from 53 facilities, participated in a surveyed as part of DCRC: CC’s ongoing quality of life study.

Participants were asked to fill in the “Approaches to Dementia Scale”, a tool used to evaluate overall attitudes towards people with dementia. Staff were asked to respond to statements against a five-point scale – from ‘strongly agree’ to ‘strongly disagree’. Statements included comments such as ‘Nothing can be done for people with dementia, except for keeping them clean and comfortable’ and, ‘It is important for people with dementia to be given as much choice as possible in their daily lives’.

“RACF staff answering the survey reported feeling moderate degrees of frustration and powerlessness in their jobs,” Beattie told Nursing Review. “On the other hand, they also experienced high levels of satisfaction and joy/happiness in their work with people with dementia.

“These results give us some appreciation of the ambivalence nurses can feel when they love what they do and the people they provide care for but may not necessarily have the resources and support.

“Making current person-centred philosophies of care a reality in day-to-day practice takes strong leadership, flexibility and tenacity, as well as the desire to set aside some aspects of tradition and habit that are outmoded in modern dementia care.”

Beattie confirms that groups such as Alzheimer’s associations, health professionals, ethicists and others are bringing attention to dementia and how quality of life can be valued and maintained; however, a fundamental element for nurses is increasing their knowledge and skills.

“Take responsibility for learning as much about dementia and the experience of living with it as you can from people with dementia themselves, family carers and the many opportunities available via the Dementia Training Study Centres’ programs, Alzheimer’s Australia and the Australian Journal of Dementia Care, to name a few,” Beattie advises.

“Improve the training of the staff you work with. Reflect on your own attitudes towards dementia and speak up when you see attitudes and behaviours that you know can be improved.”

She also suggests each day finding small ways to “acknowledge the experience, capacity and individuality of each resident, convey respect and provide opportunities to enjoy and value time together”.

“Don’t just settle for things being good enough,” she says. “Ask yourself ‘Could I, or the people I love most in the world, live happily here?’ Look with fresh eyes at your workplace. Question, identify and commit to changing care practices that are task-focused, regimented, not reflecting individual preferences and not helping residents flourish in their daily lives.”

The team from DCRC: CC will continue to analyse data collected from the 53 facilities, in order to fuel discussions on the characteristics associated with a high quality of life for people with dementia.

The research team includes: Beattie and doctors Elaine Fielding and Maria O’Reilly from QUT; professor Wendy Moyle from Griffith University; associate professor Deirdre Fetherstonhaugh from LaTrobe University; associate professor Barbara Horner from Curtin University; professor Lynn Chenoweth from UTS and UNSW; and professor Andrew Robinson from University of Tasmania.

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