DR MARITA LONG AND DR STEPHANIE DALY
You both spoke at the recent Australian Dementia Research Forum (ADRF) on primary care and how it can play a crucial role in the detection, diagnosis and management of dementia. What could/should GPs in primary care do when patients present with cognition problems?
ML: That may be easier to answer in terms of “what shouldn’t we do?” When patients raise concerns about their memory or cognitive changes, or their parent’s or partner’s changes with health professionals, they are often reassured that it’s just a part of normal ageing – which of course we know it can well be. Many people, including health professionals, still think the symptoms of dementia are part of “normal” ageing. We need to work harder to promote what normal ageing is versus MCI or dementia.
So, rather than reassuring someone that it is just part of normal ageing, perhaps we should delve deeper into it by asking questions, for example, “Can you tell me a little bit more about that?”, “How long have you noticed this?”, “How does this impact on your day-to-day life?” We know that dementia is more than just memory problems, so having a few questions up our sleeves to ask about other symptoms is also helpful.
There is still a lot of stigma associated with dementia and patients often won’t raise it as a concern, but if we ask them, they will be more inclined to open up. So, we would encourage health professionals to ask, “How’s your memory been going lately?” and allow the person to raise any concerns they may have.
It’s a bit like depression in years gone by –another “d” word that no one wanted to mention- but now every GP could confidently diagnose and care for most people with depression. Certainly, the arrival of effective antidepressants and education changed the landscape for depression- it may well be the same case for dementia.
SD: Firstly, I think we should take time to listen and take the concerns of those individuals very seriously. We should communicate with understanding and in a person-centred way, so that the individual feels they are being heard.
I think we as GPs have a curious nature and that curiosity can help us gather information that will help identify the cause of an individual’s cognition problem. We need to evaluate all the possible causes and help the individual to reach an outcome over several consultations.
What are the challenges GPs face in diagnosing dementia or mild cognitive impairment in primary care and what are some of the ways they can be overcome?
ML: How long do we have? There are many barriers /challenges here but there are also many solutions!
In terms of dementia – little or no education is probably the biggest challenge/key priority area. Many GPs have a poor level of knowledge of dementia and a low level of confidence when caring for people with dementia and this is not surprising given the limited access to robust education.
Dementia education is not seen as a priority area of education in either undergraduate or postgraduate medical education. My nursing and allied health professionals and colleagues tell the same story. So, if we want GPs to be better able to explore a potential diagnosis of cognitive impairment, we need to better support them to do this. Given the current system, I would argue they are set up to fail.
At Dementia Training Australia (DTA), we have developed a face-to-face workshop that addresses recognition, diagnosis and post diagnostic care for people living with dementia. We have been able to demonstrate that participants show a statistically significant improvement in both knowledge and confidence in caring for people living with dementia. We also found that by changing attitudes towards caring for people with dementia this also improved confidence. I presented this work at the Australian Dementia Research Forum in 2022 and won the People’s Choice Award, which was so wonderful.
MCI is a relatively new concept for many GPS as it really has not been covered in detail in any education in the past. We certainly include MCI in our workshops and this is probably due to the emergence of blood biomarkers and the potential amyloid treatments on the horizon. We are recognising more that MCI could be the turning point between normal ageing and dementia so having a sound understanding of the possible, but not inevitable trajectory, of cognitive decline will be very helpful for GPs.
It was so wonderful to listen to Professor Nicholas Ashton’s keynote address at ADRF2023 on blood biomarkers. I had the opportunity to interview him for our podcast and we talked more about the nitty gritty of their application to the diagnosis of Alzheimer’s disease and how they may be utilised in primary care moving forward.
GPs are under incredible time pressures, now more than ever, with an ageing population and more presentations associated with multiple chronic diseases and less doctors opting for General Practice as a specialty. If I am worried about a patient with a change in cognition, I would usually book a few double appointments over several weeks to complete a thorough assessment and would suggest another person to come along, for at least some of the appointments, to get the collaborative history.
However, depending on a GPs location and ratio of GPs to patients, longer consults can be a real challenge. Being able to involve practice nurses in the assessment process may be one way to alleviate some of these pressures. At DTA we are currently developing a General Practice Nurses education program to optimise the role of nurses in caring for people living with dementia.
A lack of geriatricians, neurologists, aged care psychiatrists, Memory clinics and services for people living with dementia can also be a barrier. Having more opportunity to discuss cases with specialists would be helpful as opposed to having to refer everyone for a diagnosis and then wait for appointments.
SD: There are two main challenges, Stigma and Time. There is stigma on behalf of the clinician, in that there are still a lot of misconceptions about what mild cognitive impairment and dementia is. I still think that the stereotypical characteristics of someone living with dementia are the foremost in people’s minds, be that members of the community or the health profession, and as such this means we are not always awake or alert to mild cognitive impairment as it does not really fit that stereotype.
Time is an issue- in a shorter consultation, unless the person brings up cognition, it will not always be something that a GP can raise. I think bringing cognition into routine health checks, may be a way of opening the conversation, much like we routinely ask about stress and impact on mental health, we can ask about cognition, which allows the opportunity to talk, and then a GP can arrange a longer appointment with more time to discuss this further.
Some of the suggestions coming out of the ADRF is that dementia diagnosis, treatment and care should be multidisciplinary, with a team of allied health clinicians treating a person newly diagnosed with dementia. Do you think GPs alone can manage those newly diagnosed or do you support a more team-centric approach?
ML: This is so important. We are learning more and more all the time. We definitely need a team of people to assist with care – finding them is another whole story though! For example, hearing about Prof Kerryn Pikes “Latch” program was so amazing but accessing a program like this is difficult.
Through our work at DTA I have more recently become involved in a research project about rehabilitation for people living with dementia. This has led to a physiotherapist reviewing the post diagnostic component of our education workshop and fine tuning it to be more consistent with a rehabilitation approach. It was really terrific to have her input!
My dream would be to be able to teach in a multi-disciplinary team to a multi-disciplinary audience! Breaking down the silos by leading from example!
SD: A team approach is definitely the way forward- GPs are excellent at co-ordinating care, but we cannot do this alone, we need all members of the team to be highly skilled and working collaboratively to support an individual. Local networks and communities of practice may be one way to do this. Hopefully new changes in Medicare reform will encourage this type of working.
Dr Daly, congratulations on winning The Great Debate: Should GPs be diagnosing dementia? at the ADRF! For those who didn’t attend, could you briefly summarise your key points for the affirmative argument? Dr Long, please feel free to contribute
SD: I really wanted to highlight how GPs can make a diagnosis and probably are already. The diagnosis has been and probably will continue to be for most people a clinical one- GPs know their patients well, have a relationship built on trust and so when a diagnosis such as dementia is provided by that well known person, it may represent a preferred experience for the individual.
ML: I think it really highlights the need for primary care to get better prepared to actually be able to do the job and to do that we need to better support GPs and primary care. We also need to consider more systemic Medicare changes.
The Strengthening Medicare initiative may assist in some ways by looking at more multidisciplinary team-based practices, better access, funding longer consults and encouraging continuity of care, but as the old saying goes “the devil is in the detail” and at this stage, we don’t know what the detail of the initiative is.
You both host the podcast Dementia in Practice, which hopes to reduce the stigma of dementia as well as inform other GPs about it– tell me a little bit about how the podcast came about, what it aims to do and have you found an audience of GPs keen to better understand what dementia is and how to prevent, diagnose and manage it?
ML: I am an avid podcast listener for some time. We had talked about doing a podcast as many GPs like this format of education – but it always seemed to be at the bottom of our agenda, mainly due to the complexities of capturing and reporting data to our funding body. Then Covid 19 hit and we needed to quickly adapt our teaching delivery as face-to-face events was not an option for quite some time.
We moved to online teaching easily, but found we had additional time and budget so we started to explore what else we could do. I found a podcast producer through a friend and we took it to our program manager who agreed to go ahead. We are now up to recording our 3rd season and hope that this will be ready to release soon.
We really wanted to engage GPs’ (and whoever else wanted to listen) hearts and heads, so we looked at a variety of topics and guests to do this. We have interviewed people and carers with lived experience, neuroscientists, neurologists, nurses, allied health practitioners and other social scientists. We then sit around and chat together, applying our GP filter to the content. Some of our most popular episodes have been our interviews with people living with dementia and their carers. The generosity of these people sharing their lived experiences really speaks to the heart of all our listeners.
We have had some great feedback from a range of listeners and even made it to number 61 of the top Australian podcasts in 2022. We have had lots of listeners from lots of countries and, from memory, 70% of the episodes downloaded have been listened to from start to end.
It is an initiative me and the team are very proud of. We can’t wait to release the episodes that have come out of ADRF2023 and we really appreciate the efforts you went to facilitate these interviews.
SD: During the COVID 19 pandemic, we realised that we had to change how we worked. I enjoy podcasts and so do Marita and (co-host) Hilton Koppe, and we felt it would be a really great way to deliver some further content.
The premise of much of our work in workshops is on foundational material as this is what is overwhelmingly needed, however there are topics, for example, the voices of people living with dementia that we don’t always get to share. I feel, and so do the team, that this podcast gives us the opportunity to reflect and delve into some of the more challenging subject areas and hopefully reach people on different level to workshops. It is something I am immensely proud of.
In the last 12 months there has been much excitement around the results and possibilities for new disease-modifying treatments like lecanemab and more recently donanemab. What are your thoughts on the potential effectiveness of these drugs in future treatment?
ML: This is such a great question.
I think that we are all aware that there are significant limitations in terms of efficacy, access, cost, administration, and adverse effects associated with these medications – but they do bring long awaited hope which is so important. Hope for people with Alzheimer’s disease and for us as doctors caring for people with Alzheimer’s.
I think that while we are a way off these coming into primary care, what I hope they will do is drive the demand for education by both universities and training colleges to better support GPs and other health professionals working in this space. Have I mentioned how important education is???
SD: I would say I am cautiously optimistic. I can see that after so long with negative results in trials, anything that appears to have impact should be celebrated, however, it does still seem modest. It makes me wonder if there is more to the story than amyloid alone and interested to see where the research will go next .I am sure this is only the beginning.
You can listen to the Dementia in Practice podcast here: https://dta.com.au/general-practitioners/#podcast. You can follow Dr Marita Long on Titter @marita_long and follow Dementia Training Australia @DementiaTrainAu