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‘If not medicines, then what?’ Taking a person centred approach to dementia

The Aged Care Royal Commission reported deep concerns about the over-reliance on medication or chemical restraint in residential aged care, including referencing one devastating family story of an elderly father with dementia, “off his face, drugged up to the eyeballs, incoherent and lying in a pool of urine”.

In its final report, published earlier this month, it calls for restricted prescription of antipsychotics in residential aged care and increased access to medication reviews.

NPS MedicineWise runs a program, Dementia and changed behaviours: a person-centred approach, to support health professionals in caring for people living with dementia and who experience changed behaviours.

As CEO Adjunct Associate Professor Steve Morris outlines below, the program addresses the over-reliance on medicines including antipsychotics and benzodiazepines in managing changed behaviours  and highlights the role of non-medicine options for people with dementia.


Steve Morris writes:

The release of the Final Report of the Royal Commission into Aged Care Quality and Safety is an opportunity to talk about many of the issues facing the aged care sector, in particular the ongoing need to improve quality use of medicines.

Almost 1 in 10 Australians aged over 65 years are living with dementia and Australian studies suggest up to 90 per cent of people with dementia may experience at least one changed behaviour over the course of their illness, such as agitation, aggression, wandering, sleep disturbances, calling out and sexual disinhibition.

Many may be prescribed antipsychotics or benzodiazepines medicines. While these may be useful in some situations, they have serious side effects, and strategies without using medicines should be our first port of call as part of a person-centred approach.

This over-reliance on so-called ‘chemical restraints’ in residential aged care is one of the key quality use of medicines issues in the aged care sector.

The Royal Commission’s recommendation 65 looks at prescribing of antipsychotics in aged care and recommendation 64 is concerned with regular medication management reviews.

‘If not medicines, then what?’ is the focus of an ongoing national NPS MedicineWise program which started in September 2020, where our educators are visiting health professionals in residential aged care facilities (RACFs) and in general practice to develop and implement person-centred solutions.

Our program, Dementia and changed behaviours: a person-centred approach, was developed in strong collaboration with the sector. We worked with key organisations including Dementia Support Australia, Dementia Training Australia, the Aged Care Quality and Safety Commission, the Aged Care Division of the Australian Government Department of Health and the Older Persons Advocacy Network (OPAN).

Through our current national education program and beyond, NPS MedicineWise aims to support people living with dementia, their families and carers, and people who work in this critical part of the health system.

We are increasing people’s knowledge about non-medicine therapies and strategies, which don’t necessarily need to be costly and can be tailored to meet the individual needs of the person living with dementia.

Robust conversations

Kara Joyce, the clinical lead of the program, has been told by nurses in residential aged care facilities that they “really appreciate the opportunity to take a step back from their busy daily work to reflect with their team on ways of making things better”. She reports:

“They acknowledge there are constraints, and during the educational visit we work together on solutions to individual and facility-wide issues they experience in their work.”

Kara gives one example of how care can be improved:

A nurse told me about a gentleman in her care who was unable to walk and was calling out constantly. Using a person-centred approach, her team looked at who he is, what his hobbies are, and they asked themselves why he could be calling out.

Boredom is a big thing, and people with dementia can feel boredom just like anyone else – it is just they may not be able to express it anymore. The man used to be an avid bird watcher, so they bought him a pair of binoculars, and now he sits at the window with his notebook and his binoculars and watches the birds.”

The NPS MedicineWise program highlights the importance of collaboration between the person who is living with dementia, their carer and their healthcare team, particularly when it comes to having robust conversations about informed consent when it comes to taking medicines such as antipsychotics and benzodiazepines.

If these medicines are prescribed, they should be used at the lowest possible dose, with a plan in place to review, taper and stop.

As part of our program, NPS MedicineWise is offering training for nurse ‘champions’ and pharmacists in 1,000 RACFs around Australia on best practice, person-centred care for people with dementia.

For this ‘train the trainer’ program, an RACF nominates two nurse champions and a pharmacist to receive online or face-to-face training and 6 months support while training others in the facility and improving the care of people with dementia.

A high staff turnover makes it especially challenging to maintain a culture of person-centred care. Nurse champions in RACFs, trained to train new staff, are important to ensure the highest level of care for people with dementia on an ongoing basis.

We need to keep the person with dementia at the centre of everything we do. It is that person we are caring for.

Kara emphasises the importance of trust, particularly for a person who may be confused and not know where they are.

Some aged care facilities hang a sunflower on the wall of each resident’s room, she says. On each petal is written a fact about the person. “Never make coffee with milk.” “Likes fishing.”

Using this information can help make a human to human connection with the person and help create an environment of trust, she says.

A recent NPS MedicineWise podcast episode provided me with an insight into the perspective of a person living with dementia.

Growing our understanding of what it’s like to live with dementia will help us provide the care they deserve; the care many of us may need as we get older.

In the words of Theresa Flavin, a person living with dementia:

We wouldn’t care for our newborns, or our children, or our children with a disability, or adults with a disability, or any other disability in the way that we think of people with dementia.

I would say for care professionals, if you had someone who you knew had a good intellect, who had a purposeful life and who suddenly had an acquired disability, you would still treat them with a lot of respect. Please continue.”

More information and services:

The NPS MedicineWise program Dementia and changed behaviours: a person-centred approach provides information for people with dementia and their carers, and information and activities for health professionals including articles, webinars and education activities.

Dementia Support Australia (1800 699 799) provides 24/7 advice and recommendations for people who care for someone with dementia where behaviours are impacting their care.

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