Why you should care about Australia's new dementia guidelines

Australia’s first ever set of practice guidelines for the diagnosis and treatment of dementia have been developed to help fill the gaps between the provisions of good and poor quality dementia care throughout Australia.

The Clinical Practice Guidelines and Principles of Care for People with Dementia, which will be officially launched by Health Minister Sussan Ley on Wednesday March 16, advises how dementia diagnoses, treatment, patient reviews and care must be conducted.

It contains 109 recommendations wrestling with some of the more controversial aspects of dementia care, like the use of antipsychotics and clinicians telling patients that memory loss is ‘just a consequence of ageing’.

Health professionals, carers and anyone with a dementia diagnosis can use the guidelines to find out what good quality care should look like and how doctors should be treating the degenerative disease.

“These guidelines are the proof, developed by a broad range of people and medical and behavioural specialists, about what should happen in the care and treatment of someone with dementia,” says Ian Yates, CEO of senior’s advocacy group, COTA Australia.

“They provide an authoritative basis upon which you can ask questions of health professionals. And you have every right to ask questions. You should keep asking questions until you get the answers that make you feel satisfied.

“But if you are still concerned about a certain situation, and believe the guidelines are not being followed, make a complaint.”

Rethinking antipsychotic use

Geriatrician and director of the NHMRC Cognitive Decline Partnership Centre, Professor Susan Kurrle was one of the 23 authors involved in developing the guidelines.

Prof Kurrle explains while there are many aged care facilities that boast exceptional examples of quality dementia care provision, several still use antipsychotics to ‘manage’ people with dementia. This is despite the fact that the misuse and overuse of psychotropic drugs can cause death.

The dementia expert recalls a visit to a questionable aged care facility, where every resident “was sedated to their eyeballs. The staff said ‘all our residents are treated very well’,” says Prof Kurrle. “Yes. Of course, they were. They were being ‘treated’ with antipsychotics. It was very scary.”

The new guidelines clearly state that the drugs should only be used to manage the mild-to-moderate behavioural and psychological symptoms of dementia when alternate non-chemical avenues have been tested first.

“Antipsychotics are brilliant if someone is psychotic and hallucinating and in distress,” says Prof Kurrle. “But these drugs do not have a role to play if they are being used to manage a person with dementia who wants to leave their facility and are unhappy. They have no role in making someone quiet who is calling for help all the time.

“What we need to do to manage the person’s condition instead of immediately prescribing antipsychotics is to address what is underlying the challenging behaviour.

“The clinician needs to ask ‘are they cold, hungry, in pain or constipated? There are a whole lot of reasons that are often ignored that just come down to basic care. And where agitation is an issue, we say use antidepressants not antipsychotics.” 

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Ageism and memory loss myths

Despite ongoing education about dementia, there are some medical professionals and people in the community who still believe the memory loss is just a normal part of ageing.

Alzheimer’s Australia CEO, Carol Bennett says this misconception is dangerous because it means a person in need of treatment to slow the progression of the disease could miss out on a timely and correct diagnosis.

The guidelines therefore recommend that clinicians never dismiss the symptoms of dementia as “just a part of ageing” but instead explore themas they arise .

“There is a sense that some people don’t want to rush to be diagnosed as diagnosis comes with a whole lot of consequences that people don’t often want to face,” says Bennett.

“We also know that health professionals sometimes struggle making a diagnosis because of their own beliefs or concerns.

“If we can overcome some of these challenges and get people thinking about how they can maintain an early lifestyle into the condition and after diagnosis, that will really have a huge impact.”

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Culturally-specific dementia care

Dementia affects everyone the same way. But, Prof Kurrle explains, the disease can be perceived differently by different cultural groups.

“Some communities see it as an object of evil where others see it as a normal part of ageing… So, it’s important that people with dementia get culturally specific support.”

It is also common that a person with dementia, who speaks English as a second language, will revert to their native tongue even if they have spoken English for decades. Dementia is also three times as common in Indigenous populations.

The guidelines state that health professionals should provide culturally specific language support and services for people with dementia and their families.

“There should be adequate education and CALD representation always when sought. You need to have help sheets in different languages. We need to use health interpreters regularly.” 

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Family involvement in care

Although it seems like common sense that family should be involved in the decisions about care, this doesn’t always happen.

Yates explains that some old-school aged care providers still exist, who don’t think that residents, families or carers should be included in making the decisions about the care of someone with dementia.

“Then, there is the added complication that we are talking about some medical professionals here who do not have a great history of consulting and co-designing care with the patients and their families or carers,” Yates says.

The new guidelines recognise this and recommend that clinicians include carers and families “in the planning, decision making and care and management of people with dementia”.

So if you are ignored or excluded from decision-making processes, whip out the guidelines and point to the related recommendations that say you should be consulted. 

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