Episode 18: Dementia and changed behaviours: a person-centred approach

Voiceover:

Welcome to the NPS MedicineWise podcast, helping health professionals stay up to date with the latest news and evidence about medicines and medical tests.

Dr Anna Samecki:

Hi, and welcome to the NPS MedicineWise podcast. I'm Anna, a Sydney based GP and medical advisor at NPS MedicineWise. Today, we're going to focus our discussion on dementia and changed behaviours.

Now, you might already be familiar with the Royal Commission into Aged Care Quality and Safety, but in essence, it found some glaring gaps in this space, particularly in the way medicines are being used. So joining me for our discussion today is Kara Joyce, an accredited pharmacist working at NPS MedicineWise. Hi Kara.

Kara Joyce:

Hi Anna, thanks for having me today.

Anna Samecki:

Thanks for your time. Now, you and I know each other pretty well. We've been working quite closely together this year, socially distanced of course. But for our listeners, can you tell us a little bit more about yourself and what you do?

Kara Joyce:

I sure can. So I work for NPS MedicineWise as an educational visitor, delivering educational programs to GPs, nurses, and pharmacists and for the past year, I've also worked as the clinical program officer for the Psychotropics in Aged Care Program. As you said, Anna, Anna has been our medical advisor on the program and we've worked together quite closely in building and designing this program, which has been really exciting.

Anna Samecki:

Thanks for that intro, Kara. Now, we've already briefly touched on the Royal Commission, but can you fill our listeners in about what the main issues facing aged care are, specifically from a dementia and changed behaviours perspective?

Kara Joyce:

Yeah, I sure can. So probably what I first want to clarify is the term change behaviours, because I know that that might be a new term for some healthcare professionals. So previously, they may have known it from a BPSD point of view, so ‘behavioural and psychological symptoms of dementia’.

Now, we're going with the language of ‘changed behaviours’. It's to bring it in line with the language guidance that Dementia Australia recommend, and it's just to make it more accessible and less maybe pejorative in nature for carers, families and people with dementia.

So what we mean when we're saying changed behaviours is things like aggression, agitation, wandering and calling out. And as a lot of listeners know, about 90% of people with dementia will experience change behaviours at some point throughout the dementia journey. So it is very common.

Whilst about 70% of people with dementia reside in the community and less are in aged care facilities, where we're seeing potentially, let's call it, the issue is in those facilities is a bit of an over-reliance on medicines to manage these behaviours. That was one of the findings of the Commission's interim report.

So what NPS MedicineWise has done is we wanted to support healthcare professionals in the area and we wanted to support them from every angle of the team, so not just coming into primary care, but also coming into the aged care facilities and giving some education to people around the limitations of medicines and different modalities out there to help improve the quality of life of patients because we know that an over-reliance of medicine is going to worsen quality of life. We see oversedation, disengagement from social activities, increased incidence in UTIs and pneumonia, disturbances in gait and that can lead to fall.

So there are a lot of issues associated with the medicines. That's not to say that they don't have a role. It's just a lot more limited than previously thought.

Anna Samecki:

Without going into too much detail, can you give us a little bit of idea of the types of medicines we're talking about?

Kara Joyce:

Yeah, absolutely. So our program will be focusing primarily on anti-psychotics and benzodiazepines mostly because they were the ones that were most commonly involved in what the Commission term chemical restraints, so medicines used to control behaviour.

Anna Samecki:

Thanks for that, Kara. Now, I guess we certainly know that there are a number of gaps that we need to address in this space. I think we can also appreciate that COVID has added, I guess, a new layer of complexity. So I'm interested to hear your thoughts on how COVID-19 has influenced this area and what NPS MedicineWise has been doing to help bridge that gap.

Kara Joyce:

COVID's changed the way aged care facilities operate. We've seen a reduction in the number of services entering facilities, particularly volunteers and families as well, and potentially the way facilities are staffed.

This means that for someone with dementia, there's been big changes to their environment in a relatively short period of time. They might not be able to do their regular art classes or see their grandkids every Tuesday. These routines often keep people with dementia grounded and improve their quality of life. It would also be fair to say that some facilities would be noticing an increase in these behaviours, or responses is probably a better way to call them. It's a response to a situation because they have an unmet need and that could be boredom and loneliness. It could be many reasons.

So what NPS MedicineWise has done is we are going into aged care facilities and doing a train the trainer program for nurse champions, essentially upskilling them on how to deliver person-centred care and tailor care according to the needs of someone, and also how to communicate this information to the rest of the care team. So via micro training and feedback.

And particularly the non-clinically trained staff where perhaps we had seen a high turnover in staff before. Now, we're just really trying to change the culture of the aged care facility by meaning that it doesn't matter how high the staff turnover is. They can continually engage whoever is interfacing with the person with dementia as to how they best need to be cared for.

Anna Samecki:

Yeah. And look, I think an important point you raised is that this program places a strong focus on person-centred care. It's no secret that the care of people with dementia has come under scrutiny in recent years. What do you think besides that high staff turnover, what do you think are some of the other reasons that care for people living with dementia has been so fragmented?

Kara Joyce:

That's a good question. I think that there's a lot of people involved in the care team. I think we underestimate how many people actually need to be involved in care.

So coordinating that care can be difficult because whose job is it? I think it's everyone's job, which is the right answer really.

And then practicing across varying settings. So we've got people in acute care, in primary care, in facilities and communicating across those settings can be very difficult. So that idea of ad hoc teamwork is a tricky one. As we mentioned before, staff turnover, delegation, and changing roles and communicating that can be tricky as well.

Also, I think there's a gap in knowledge as well. So the evidence base for medicines, often people overestimate their effectiveness and underestimate the harms for people.

I think we also assume that everyone graduates knowing how to care for people with dementia and having that awareness how to engage with people. So the NPS MedicineWise program will hopefully offer a solution in that it's a really easy way to upskill and to get up to date with the best practices in person-centred care and in the role and limitations of medicines as well.

Anna Samecki:

And I definitely agree with you there, Kara. It's actually been quite eye-opening and very informative to be able to work on this program. I feel quite privileged. I've certainly learned a lot. But where can my colleagues and other health professionals find out more information about dementia and changed behaviours?

Kara Joyce:

Sure. Dementia Training Australia is a fantastic website and they have lots of online short courses that you can enrol into just to quickly upskill on areas of interest.

So they've got a great course on responsive behaviours. There's another fantastic one called The View From Here that gets you to understand and put yourself in the shoes of someone with dementia to maybe bring that empathy to the interaction with someone with dementia. So I really recommend that you check them out.

We also have Dementia Support Australia who offer two services with DBMAS and the Severe Behaviour Response Team, whether you're in primary care or in facilities to help support practitioners dealing with people with changed behaviours. If you're just at your wit's end and you don't know where to start, they'll help coordinate that care and the comprehensive assessment for someone with dementia.

Of course, NPS MedicineWise has a fantastic hub on our website that links out to many great resources including the dementia outcomes measurement suite which has some really good validated questionnaires that can help track someone's progress as well.

Anna Samecki:

Fantastic. Now, on the other side of things, do we have resources for patients, their families and carers that we can direct health professionals to as well?

Kara Joyce:

We sure do. So Dementia Australia have a really good website, a support hub for carers and families. They have a hotline there and many resources around understanding dementia diagnosis to engaging with someone with dementia that could be really useful for them. So I really recommend they check that out.

There's also the Empowered Project, which is questions that people should be asking themselves and their health care professional before medicines are used to see if they're appropriate and if it's something that they want to do.

And OPAN, so the Older Persons Advocacy Network, they have some great resources on medicines, It's your choice, just to help inform consumers about the different options out there.

Anna Samecki:

Perfect. Thanks for that, Kara. I think that's been a nice snapshot of what NPS MedicineWise is doing and more generally what the issues have been.

So thanks for that and thanks to our listeners for joining us today as well. I might just add that we have our National Medicines Symposium coming up in December. So please join us if you can.

Voiceover:

For more information about the safe and wise use of medicines, visit the NPS MedicineWise website at nps.org.au.