 Good evening everybody. Welcome along to the nearly 2,000 registrations we've actually got for tonight, participants for this evening's webcast, but also to those who are reviewing or viewing this later as a podcast. MHPN wishes to commence tonight by acknowledging the traditional custodians of the many lands across Australia in which our participants and also our speakers have gathered and come and live and learn. We wish to pay our respects to those elders past, present and emerging for the future, the traditions, the culture and the hopes of the land that we share in Indigenous Australia. My name is Conrad Cungrew. I'm a GP in Prosthabine in North Queensland, a GP supervisor and has been participating in these MHPN webinars for a few years now. And so I'll be a facilitator for tonight's session. I'm not an expert in these areas as for any of us, but hoping that we're all going to be able to come together and learn a lot from this fantastic panel who we've got. So hopefully you've all had a chance to read up on the case study tonight and I'm just going to take you through to introduce each of the wonderful panelists who we've got. I'm going to start off with introducing Professor Dimity Pond. Dimity is the Professor of General Practice at the University of New Castle, but she's also been a GP in clinical practice since 1984. Of that time she spent about 20 years working on research in the area of Dementia, mainly on how to streamline the GP approach to what is often for many of us a very difficult but still increasingly common problem. Dimity is currently working on GP consensus guidelines for common general practice aspects of dementia, identification and care. Welcome, Dimity. I understand that you're working on these consensus guidelines. When are these going to be available to GPs? Thank you, Pond Rand. If I'm working with a cognitive decline partnership centre, project finishes at the end of June and then the new guidelines, the GP guidelines, have to go through an authorization process. So I'd say in the middle of the second, around September or something like that, they'll appear on the CDPC website, a cognitive decline partnership. We'll be keeping an eye out for them. Thanks, Dimity. Now welcome Alison Argo. Alison is a clinical psychologist who specializes in gerontology. She's been involved in research for people with Parkinson's disease, but currently she's working with Queensland Health, primarily focusing on cognitive assessment for differential diagnosis of dementia, older person's mental health and also care education support. Alison has worked across various settings including regional and remote, as well as being involved in acute inpatient and community settings. For several years she's also been lecturing in a dementia specific course for TAFE students out here in rural North Queensland. Alison's a long-standing member of the steering committee of the Queensland statewide dementia clinical network and the part of what they are involved in is informing government policy, ensuring consistency of the treatment available for patients across the state, disseminating dementia research and initiatives, but also as all of us are involved with advocating for people with dementia, their family and their carers. Alison welcome, what do you find rewarding about working with carers or people with dementia? I'm sure everybody will agree with me. They're very vulnerable people and I do find it very rewarding because often we can actually put in a very small amount of time can create some really great and lasting reward. So a session or two sessions providing some validation and a quick bit of education or fine-tuning of what they're already doing well and you can see a reduction in their stress and their worry, that then reflects in their health and their own demeanour and then that directly impacts and positively influences how they can then look after their loved one and carer and then that positively impacts on the person with dementia. So it truly is very rewarding and yeah getting some of those positive outcomes there's nothing like it. Excellent. Now as I introduced Alyssa Westfield, Alyssa is a registered occupational therapist with she's got extensive experience in aged mental health but also a special interest in utilising non-pharmacological approaches to more effectively enable, engage and care for those with dementia. Welcome Alyssa, what is something you tend to always keep in mind when you're working with carers? Thanks Conrad, look I'm always conscious of engaging the carers as the experts, they know themselves best and they have the longitudinal history with the person with dementia. So it looks there just so pivotal in the relationships that you're able to form and also the progress that you're able to make in helping them. Thanks Alyssa, that's great. And last but not least I'd like to introduce Professor Stephen McFarland. Stephen is head of the Clinical Service for the Dementia Centre of Hammond Care. He's been very active in Alzheimer's disease clinical trials since the late 90s and has actually been involved in setting up his own clinical trial centre based at Caulfield Hospital. Stephen's clinical interests include frontal lobe disorders and senile squalor. Stephen you've worked for Dementia Support Australia as their head of clinical services. Does Dementia Support Australia have any role to play in supporting carers of people with dementia? Absolutely, I mean Dementia Support Australia is an umbrella organisation for two programmes, is the Severe Behavior Response Team and the National DB Mass Program, Dementia Behavior Management Advisory Service. SBRT only goes into Commonwealth-funded aged care facilities, so in that sense we support paid professional carers. The DB Mass has a community focus as well and maybe about 25% of the referrals to DB Mass are for people living with dementia. At home with family carers, so we help them manage behavioural problems that might arise during the course of the illness and provide strategies to decrease the carer burden and improve the quality of life for the person living with dementia. Thanks, fantastic Stephen, thanks so much. So to everybody who's been part of an MHPN webinar in the past, you probably notice that it's a different format that we've moved on to a new platform and really that's come about through the immense popularity of these workshops. Tonight we're already up to about 600 participants, I think by the look of it we might be expecting a few more and we actually just outgrew our previous platform, so I hope you all enjoy the interactivity of the new format or might take a little longer to get used to. Now nonetheless, there's still a lot of the same principles that apply to access the chat box so you can all engage in the participation. Open the open chat box tab at the bottom of the screen and then that will open up into a new tab for you. There'll be a resource library tab also at the bottom of the screen there where you'll be able to find links to supporting resources which we may have and of course we've got the technical support FAQs tab up the top there which you can access to advice through with any of your technical issues. We've also got the free trial number there to call if you are still having difficulties. But yeah please do make sure that you do give us your feedback on the experience and that there's also going to be some comments about this new platform in the exit webinar which will encourage you all to complete at the end of the session. I'm going to move on now just for those all familiar ground rules that we want everybody to remember and just to make sure that everybody gets the maximum benefit out of tonight. Please make sure that you remain respectful of other participants and panelists even though we're in a virtual space. We're also sharing the same discussion conversation so just behave as you would if we were all face to face. As I said please do feel free to use the participant chat box but try just to make sure that you're keeping your comments on topic. There's a lot of comments that come through very rapidly so if there are succinct we're going to be more able to actually keep up with them. Now as I said there's the FAQ tab for the technical support but if you can't get anywhere with that feel free to call Redback Help on 1800 291 863 but if there is something which is actually happening across the platform we'll alert you with an answer about that and as I said once again please make sure that you do complete the webinar at the end before you log off. Now we've hopefully all had a chance to read through the case study about Maureen so I'm not going to be going through that in any depth now but we are just going to revisit the learning objectives for tonight so we're hoping that by exploring dementia in this fashion we're going to give you the chance to identify some challenges, tips and strategies for building appropriate referral pathways and how to implement a collaborative response that might best assist families caring for people living with dementia. We're hoping you'll feel able to implement key principles of providing appropriate therapies and communication approaches for those families who need to engage with their family member who is experiencing dementia to maximize their support. We also want to make sure that everybody's able to describe the general principles of providing a safe and supportive environment for families that are providing care for people living with dementia including self-care and of course we do have to remember that dementia in and of itself is a massive topic and there's no way we can actually cover all that. So a reminder that tonight's webinar is not actually about dementia as a clinical state it's about how we can best support the carers of those supporting somebody with dementia. So on that I think it's time for us to move on and Dimmy we're talking about Maureen as the carer for Malcolm and we're anticipating that Maureen might be your patient so what's it where your perspectives are if Maureen comes along to see you. Thanks. So basically Maureen is going to present to us at the end of that scenario going to present to a GP with this stress and depression that she's got in relation to looking after her father Malcolm. So depression is really common in people with dementia and sorry in people who are caring for someone with dementia and I've got details there on the slide about it being up to 30% and other stress related psychiatric disorders like anxiety a little bit further down fear for the future insomnia all sorts of physical symptoms reduce quality of life lack of time for themselves in their own social life feeling they've lost control because they never know what's going to happen next. Some days dad might be good and other days not so good and practical hardships are Maureen's considering having to give up work and that will reduce her income so it's a problem. So someone like that so are you going to move the slides on or I do that. You'll find it. Yes yes here we are. So if we look at we look at this pie chart you can see that more than 50% of carers say that caring has negatively affected their mental health but there's still a significant number who aren't worried about or don't report that they are and there's even some people and a reasonable chunk of people about 20% who say that they actually benefit from caring. Now if we want to assess someone as a GP there are scales like there are for depression that we're so familiar with the K10 we're doing mental health plan or something like that. So there's a caregiver burden scale the reference for that in the next few slides and you'll have it on your handout and those are the questions I'm not going to read them all but they're very useful questions because they're on a scale and yet they get at these deep issues that carers have such as feeling angry which is easier to ask when it's part of a questionnaire rather than as a sort of confronting question for the GP asking the person. It's also possible that you could get your practice nurse to die through this with a carer. So the reference for it's there. There's lots of carer scales. So if I'm assessing someone like Maureen I'd be looking at depression, anxiety, insomnia, financial stress all the things that we've just talked about and then I'd start moving into how is she looking after herself. What's her social life like? Lots of family relationships are often quite stressed when someone's a carer. Different people in the family have different views. Self-care strategies and I've listed some of them there. GPs are very very familiar with self-care strategies and very good at suggesting them and then what do they need? Well at the top I put education but in actual fact I think on reflection that carers need to be listened to first of all and validated that their feelings are normal and expected when they're in that stressful role. Then sure education about dementia as appropriate for the carer and for their situation practical strategy. Excuse me. Assessment and management of their physical and emotional problems. They may actually have physical problems to do with the physical task of caring, lifting and all the extra work. Assistance with respite. There's respite available through my aged care and you can get people to come and sit with your person you're caring for while you go shopping, something like that. Planning the move to residential aged care and then looking at sources of support and just I should mention two excellent ones which are out from Australia which offers a helpline so people can ring. People can also ring GBMAS which was mentioned earlier and out from Australia also had some excellent help sheets. And then finally and last but not least psychological approaches. So we've got cognitive behavioral therapy having been tested and proved to help carers by reducing that burden of care on a scale like that Sarah burden scale I showed you. It delays institutionalisation. It improves survival that's for the person with dementia and but carers also have a mortality and morbidity rate and it improves secure skills in managing patient behavioural problems. That's it from me. Wonderful thanks Divani. So it's great to get that coordinating approach from the start and you'll just touch there on some of the some of the therapeutic things that that might be of assistance and also we might move on now to you there on what other therapeutic approaches do you think are appropriate for a lady with more reign caring. Thank you Conrad. That was a lovely lead-in from Dimity into the psychological perspective on how we go about helping a carer. My slides are quite busy so I'm actually not going to cover them all. I just wanted to have the information there for you but you would have seen from Maureen's case she's got a lot of the classic symptoms of carer burnout so the red flags are there and the impact is actually quite serious so there's a lot of research that reports serious implications for the carer's health physical health emotional mental health her social relationships her work is at risk so I want to get into the types of treatments that we would do and first and foremost I want to just highlight there in bold you can see that the the treatment targets that are required particularly when a carer is in quite severe burnout it's usually because there's a lack of support so we usually have to do multiple things at once for them and we have to magically do that without actually adding to their burden so we can't have our own intervention be be another burden for them and the types of things that we need to do simultaneously are the practical supports themselves there's no point in providing emotional psychological support if you're not actually changing the environment for them if they're if they're overtired and they're not getting any help their exhaustion isn't going to go away without the actual practical help so that is all the pathways that Dimity's already mentioned but I will cover them briefly in a minute education on self-care is is essential and I'll cover that in a slide actual therapeutic input to help them address the emotional things that are going on for them and and then specifically education on dementia management so trying to do all of that at once and not burden them is is a real challenge so with self-cares for most of you out there you're also in a caring role so the same principles of self-care apply to us all sorry I just clicked on that by mistake so the the point that I'd like to make here is is one that actually is is is very inherent in our society and particularly so for women but not just for women is the concept of putting self last because heaven forbid if we put self first that therefore makes us selfish and that's a bad thing it's a wrong thing so the first thing I have to do is is make check in with someone and make sure that they understand that that concept of self last is is a very dangerous thing and we need to shift that because if they're not looking after themselves first obviously they crumble and then we've got no one to look after the person with dementia so that that whole logic needs to be shifted and then there's lots of again Timothy's already mentioned lots of literature and lots of classic techniques on on how we look after ourselves and find that balance they do need to understand and the literal and physical limitations on one person alone caring for someone with dementia I find validation is is probably the key and if we do nothing but validate their experience and and often confirm for them when they haven't had a diagnosis what's going on that can it can do amazing things for them alone okay so self-cares definitely need to be highlighted I actually think I skipped a slide so I'll just go back to the practical support it's a national system now through my aged care and the ACAD or the ACAD team I just wanted to highlight there that the issue of decision-making and who is making decisions is a big one that comes up extremely regularly in people with dementia as their cognition fails and so and often it comes up because we're needing to put those supports in if the person with dementia lacks insight which actually happens to be one of the most common symptoms people think it's memory loss but it's actually that loss of insight that's very common for example in in dementia is like Alzheimer's disease then the person themselves thinks they're fine and that they don't need support and that's where you find the the carer burden and the carer burnout is often quite high because we come along and find that the person with dementia is still calling the shots and saying I don't need any help in the case of Maureen here Malcolm is actually saying he doesn't want any other help he only wants Maureen so and that's quite a common scenario so establishing who is the decision maker is another very important thing to do and it it's very complex we certainly won't be able to cover too much of it tonight but we can we can brush on it in question time so self-cares are important I've just got a slide there on the emotional processing so that would be more specifically some psychological intervention CBT and therapeutic input with the carer importantly there I've just got gently gently if you've got someone who's very exhausted in front of you the chances that they're going to take in much are very slim so you've you've got to understand that cognitively they're not taking in much because they're very exhausted and they'll tell you so as well which which makes things a bit easier but the the themes that we do find that do need to be addressed often I find we have to put the practical supports in first get them some sleep some validation they're feeling better and then you can actually start working on some of these really deep seated emotional things that they have to process grief and loss being a main one and also guilt as the carer comes up consistently on the right hand side I've actually just got some quick points on delivering the dementia education so the way that works is that if we can tweak and fine-tune what the carer is already doing that then improves the situation for both the carer and the person with dementia so there's some classic techniques I've got listed there task breakdown the main one I would like to highlight is the non-verbal communication so when the language is failing non-verbal communication is very important and also fine-tuning the techniques we need to personalize them for the person with dementia and the the right type of person to do that are our occupational therapists who can actually really personalize and fine-tune to for the person with dementia and for the carer so on that note I will finish up thanks Alison and there's no question at all that being able to properly individualize the approach for the for the care of somebody with dementia really is so important so yeah a little bit lovely here where the occupational therapist role would fit for this area great thanks Alison and Conrad sorry as an OT as Conrad and Alison have said it's very much the role is individualized to suit the needs and abilities of the carer and the person with dementia generally start by identifying the carer's issues priorities strengths and abilities this helps guide the OT in using an enabling strengths-based approach that utilizes and best meets the carer's needs exploring the carer role self-care and their readiness to change informed the therapist about the meaning this role brings their past successes and difficulties how they de-stress and their willingness to change or try strategies for Maureen and for many others I might actually explore the possibility of engaging family friends or community members and may use a more shared approach with with the family for Maureen talk a bit about communication a mismatch in the communication and approach styles with the abilities needs and preferences of the person with dementia can be a good trigger for responsive behaviors and it may be that and non success in terms of visiting her dad might be because of the communication and approach styles that she's actually using so simple changes such as being less demanding validating his feelings simplifying the language use avoiding arguing and reminiscing about present topics may actually help if the frequent calls are identified by Maureen as an issue it may be useful to explore the timing duration reasons for the calls and what assists in resolving those so that that information can be used okay moving on to focusing a bit on Malcolm because it's difficult to only focus on the carer because the carer is really experiencing a great deal of issues because of the care being provided and the relationship there so for Malcolm if there are functional causes to his incontinence they're always worth considering and exploring so task breakdown can be quite useful in identifying the steps that he's actually struggling with for example if my Malcolm has visual perceptual difficulties that make it difficult for him to perceive the toilet in space I might actually suggest changing to a higher contrast toilet seat disengagement from many selectivities is a common occurrence during the dementia trajectory and it can contribute to anxiety depression agitation engagement provides a sense of structure purpose identity and meaning and as such for the person with dementia is something that we really shouldn't overlook the environment too is a powerful dictator of behaviour and particularly for those with dementia so we might look at these by exploring Malcolm's interest his abilities strengths his time use the opportunities available for engagement and how the environment enables and disables him these all help providing vital clues that facilitate strategies being developed that maximise his engagement and functioning finally in terms of assessment it's really important to consider any sort of risk and safety issues that may be present okay moving on to some intervention focused things um for carers like Maureen it's always worth trialing considering trialing strategies that have a high chance of success first and that also utilize her strengths there are a number of additional strategies in the arrow bar on the slide that you have and you've also heard strategies from both Alice and indemnity modifying expectations in the way tasks are done may assist in reducing care is stress so for instance for Maureen we could explore online grocery shopping or cooking in batches a shared schedule might be used to allocate responsibilities to different people and share the caring load i'm having it online for many people these days as a useful way of tracking who is doing what when and allows for that instant sharing of information for Maureen and for many other carers having periods scheduled for relaxation and physical activity so low activity and high activity time can provide that opportunity to engage in more self-care behaviors physical activity may also help not just Maureen but also Malcolm and sometimes aromatherapy is something that's quite useful to try with the person with dementia particularly if there's an agitated base. Dimmity talked about supports and so i'm not going to go into that other than to say that you're often looking at increasing or getting what support is available that you can okay finally engagement for those with dementia it can be necessary particularly if things progress for carers to direct or encourage engagement engagement strategies should utilize the person's abilities and skillfully compensate for any deficits they should be structured to provide routine and to prompt engagement and for Malcolm a daily schedule with what he needs to do what is available to do or ideas of things to do may actually assist and it may provide the carers with something concrete that they can refer to and prompt the person when needed activities that are familiar and achievable are vital in facilitating an enabling approach but often what we need to do is actually modify or simplify the activities repeated one to two step activities draw on the strengths that many of those with dementia retain for some time so they're useful to look at and having tasks related items clustered together is another another useful task simplification technique so Malcolm activity stations comprising activities with repeated steps could be set out in his environment an example given on the slide there of the laundry with the folding activity and placing a sign that invites engagement and directs that can be quite helpful again we look at pacing low activities with high activity times to provide opportunities for both exertion and also rest and recovery and as a dementia progresses often the person needs more of that time for the rest and recovery compared to the high activity time technologies increasingly receiving attention for its capacity to automate some care activities manage risk issues and facilitate engagement and that there are some things that may be useful for Malcolm in that as well finally the environment there are a range of recommendations and principles when it comes to modifying the environment to be more enabling many are inexpensive and free or free and easy to do and I'd encourage you to check out the enabling environments.com.au website as a starting point starting place thank you Alyssa that's that's that's fantastic and thank you very much for all of those insights Stephen of course we've we've just heard from from Maureen's GP and the wonderful allied health professionals who've been involved also with looking at how we might be best caring for Malcolm what would be your psychiatrist's perspective to share on this so far I'd be trying to identify clinical issues that I'd have the capacity to influence and the case study the way it's presented gives us a number of clues or opportunities to intervene to help both Maureen and Malcolm which holds for example that he has a dementia that's likely of mild to moderate severity it's excuse me mild according to his MMSC at 23 but probably better called moderate with a mocker of 18 is presenting behavior of concern if you like is identified as anxiety which manifests by him frequently ringing Maureen throughout the day my clinical hypothesis there would be that the anxiety is contingent upon his cognition in other words with the mini mental around that level and left at home to his own devices during the day he finds it difficult to struggle to orient himself to reality and so what should what he should be doing at any particular time of day so the phone calls to Maureen serve to prompt him and reorient him as to what he should be doing reorient him to time and place and person perhaps so if we could improve his cognition potentially the anxiety may well be dragged along in the wake of that so that's a clinical hypothesis that I would have in regards to Malcolm Maureen obviously has her own issues the likelihood of care of burnout has been raised by the previous speakers we learn from the case history that she's spending 25 25 minutes each way driving every day to see her father she's spending up to four hours each day on the weekend to support him which is a significant time commitment for her she has her own complex family needs we hear that her husband is working up to 60 hours per week she's unsure of his availability to support her in her care for Malcolm we hear that she has a son age 29 who's still at home because of learning difficulties there's family conflict regarding the ideal care environment from Malcolm with the siblings who feel that strongly that he should remain at home Malcolm himself has rejected help from the other siblings so that avenue of assistance to Maureen seems locked off Maureen herself seems likely to be depressed from some of the symptoms that are described she's struggling to sleep she's lost interest she's getting snappy with her husband I'd be looking to assess her for clinical depression at which level we might be able to intervene as well so she's stuck in a position where she has to meet the needs of her father who's ailing she has to meet her own needs in terms of health and recreation time off and she has to meet the needs of her family who remain at home now although we're looking at a webinar that's talking to supporting people who care for people with dementia really you can intervene at any number of levels in order to ease the care of burden if we can for example improve certain issues in relation to Malcolm I'm thinking about the anxiety cognition link I'm also thinking about the incontinence that's been recently developed that improvements in those symptoms for him will help Maureen we can also target interventions towards Maureen herself assessing and treating possible depression for example and if she's depressed and caring she will struggle more and burn out more quickly than she would if she were not clinically depressed so the direct interventions for the carer and then the systemic interventions things that we can do in terms of the provision of external supports that might ease the direct care of the burden that Maureen herself has so the clinical approach I'd take to this I think I actually like to see Malcolm and see him in my rooms certainly explore that link between anxiety and cognition I'd be asking the question if he has Alzheimer's disease for the cognition of that level whether he in fact has had access to a colon estrus inhibitor a cognitive enhancer at any point if we can improve his cognition in that way he'll be less anxious and have less reason to stress Maureen throughout the day the continence is a big potential problem and the emergence of continence issues is often the straw that breaks the camel's back between someone being able to remain supported at home in the need for residential care so it advise as a first step that we send him to the GP for a urinary tract checkup urinary continent nurses or continent clinics or indeed a continent specialist in the form of a urologist could be invoked to help assess Malcolm for that particular issue I'd be looking at his medications to see if he's on anything that might be making him more likely to be in continent I'd be medically reviewing Maureen as a separate issue as I say I'd like to see whether she has any underlying depression that might benefit from treatment either through pharmacological or non-pharmacological means as our psychologist has mentioned earlier would mention there's an independent issue that may or may not be related to her depression that she's struggling to sleep as well so she has a separate sleep disorder or a sleep disturbance as part of her depression if we can fix that she's going to be able to cope with whatever demands life throws at her during her waking day I'd be particularly keen to ask Maureen the question you know if you could change one thing about your situation at the moment what would you wish for to get her sense of priorities about what would help her the most it's a very useful question to ask we can look at providing an increase in systemic supports we hear that the moment he's got some limited supports going into his own home but a referral through the my aged care portal may well qualify him for an increased package of care or indeed approval for respite which in itself should help ease Maureen's care of burden I'd be wanting to encourage Maureen to explore her husband's willingness and capacity to assist with care the case study as it's written leaves it somewhat ambiguous whether he has either the capacity or the willingness to help Maureen seems unsure whether he has the willingness he should be asked to see what he can bring to bear to aid Maureen in the difficulties there's also external assistance that might be provided in the form of increased financial support one of Maureen's stresses is she feels torn between having to earn an income to support her family and to cut down her work on the other hand to support her father so obtaining some financial advice around that the Department of Human Services has a free financial information service and she may from the information that's provided in the case study also be eligible to receive a separate carer allowance so assessments at the level of the patient at the level of the carer themselves and seeing what systemic supports we can bring to their kind fantastic Steve thanks so very much for that wonderful perspective and for everybody for those great insights that we've all taken so much out of thank you also so much to the to the to the participants as well we've already got a number of great questions which have been coming through and in points of discussion also together with those which many of you took the time to submit prior to the webinar as well so I'm going to move through a few of these dimmy I might just move first to one here seeing that a lot of the participants that have been asking about helping patients and their carers to access support services that they might be available do you see there's any role for the general practitioner in facilitating this yes I think there is I think it's actually vital for the GP to to do that because of the flow on effects for the relationship and for both the carer and the person living with dementia so there's various ways we can do it I mentioned telephone support lines and Steven mentioned the DB mass that you can ring up and also out home in Australia and there might be local carers groups in our community health centre we have a a carer support group once a month so it's worth asking a practice nurse perhaps to explore what's available but the other things are more the things we're accustomed to if the carer is your patient which can always be you may and they appear to be depressed then a mental health plan is completely appropriate and they can be referred then to a psychologist for all of the good things we heard about it can be done in that way it might also be that the person living with dementia dementia is counted as a chronic disease so you can do a chronic disease management plan and team care arrangement and you might if there's an OT available you're a little bit thin on the ground but if there's an OT available that can assist that person from the dementia point of view and suggest some strategies for improving things at home then that can be part of a chronic disease management plan and team care arrangement so those are the things we're familiar with and of course we can refer both of them off to a psychiatrist or a geriatrician if that seems appropriate. Thanks Dimity. We've certainly heard from some of the practical considerations in planning for the need for planning for future treatment for patients like Malcolm Ellison how would you suggest that especially when you've got a family of the patient with dementia who might not be accepting of the diagnosis or may have some degree of conflict amongst themselves how do you would be a wise plan for how they might proceed when it seems to be conflict between the wishes of the patient with dementia and their carer and Megan and Peter have certainly noticed that the questions you've been raising about EPLA's yeah. Sure it is an area that to do with decision making capacity that often raises a lot of questions you did mention there though Conrad about the family perhaps not accepting the diagnosis so that also needs to occur during that diagnostic process that the family does require a lot of support and education around that sort of education on the facts as well as emotional support but I suspect here a lot of the questions about what do we do when the person with dementia has different ideas or is not accepting of support so in in our current examples probably a great one to use with Malcolm by the sounds of it refusing to get any help except from Maureen like his favourite daughter so and on the outer and possibly the son too busy or so Malcolm at the moment sort of calling the shots if you like the the most useful approach is assisted decision making where we're actually it's a balancing act between respecting and honouring the the person themselves and their personality and their history the person with dementia that is so we're trying to uphold their autonomy and independence where possible versus we're trying to mitigate mitigate risks so in this example it would be the risk is Malcolm actually continuing to refuse support including respite means that Maureen is going to get more and more exhausted she you know her ability to cope pretty much ends and unfortunately Malcolm ends up needing to go into permanent placement a lot sooner than he would need to that's a great risk and it's obviously not serving in his best interest so these type of triggers and these risks come up so when we do assisted decision making we try where we can to do all forms of negotiation and education and compromise where we don't have to do anything formal so we could perhaps educate in this example we maybe it's Anne needs educating in in how to deal with her dad maybe it's negotiating and compromising with dad or just trialling things and seeing how it goes but if all of that fails we often end up having to establish who is the decision maker and that's where people have a lot of questions it is quite a complex process that needs to be done usually by specialist doctors or by gero psychs like myself and when we establish if Malcolm is lacking capacity that's when we need to put in alternate decision makers so if Maureen or the kids for example if Malcolm has made an enduring power of attorney then that enduring power of attorney comes into play and they can make decisions in Malcolm's best interest or they'd make the decisions that Malcolm could still make would make if he still could if there is no enduring power of attorney in place that's when you hear about the cases where we have to go to the civil and administrative tribunals of each state so here in Queensland ours is called the QCAS and they actually satisfy themselves that Malcolm lacks decision-making capacity and then they appoint the appropriate people which is obviously usually spouses family etc so that's how we get around it we try and do it informally and make it all happen and then if we can't do it informally and the risks are too great then we have to formalize it in some way sorry that was long wasn't it that's fantastic Alison and I think that that's really answered a lot of the questions which are a lot of our participants that have been posing so thank you so much for that one Alyssa I'm seeing time and time again on these on these chat questions comments about how do I access an OT and how do I actually get get in there and there's no question at all that being able to really capture the the abilities of strength and the interests of the patient with dementia really is critical in being best able to plan something I think particularly for those for those participants who might struggle to actually be able to access OT services would you be able to think of any any simple examples of interventions which our participants might be able to use or suggest for the carers of patients with dementia I think that one of the good places to start is the internet it's a great wealth of information about anything from the different sorts of activities you can do with a person with dementia to techniques for communicating and then you have YouTube which brings it all together in a way that models it for you so that you can pick up things and learn new skills from that if you're looking at activities that you're wanting to use some of the things that I would suggest you starting with or what are the interests of the person and what roles have they had in the past and what are the things that we might be able to provide now that continue those sorts of things one of the things that happens when a person's diagnosed with dementia and continues through the dementia trajectory is that things that they've been interested in and active in become they disengage from that or they're forcibly disengaged by people around them who see them failing at elements of the task so withdraw them from doing the entire task and what we need to do is get cleverer at actually modifying and looking at what are the bits that the person still can do that we can continue to allow them to do or how might we actually simplify their tasks so that they're using skills that they have and we don't have to worry about them experiencing a sense of failure or being confronted with that with their sense of failing abilities so there's lots of activities that can be done out there repetitive activities is one that I often start with because it's often a real strength for people as I said earlier those can be things like sorting folding tying winding tearing stringing picking counting singing blowing bubbles all of those sorts of things things that continue roles you might think about the work role that a person has had what work has they done and what could we give them that might replicate elements of that and make them feel like they're contributing or things are purposeful for them we might look at preferred music chores around the house or even if the person is in residential aged care there are heaps of chores that can be done even if it's you know wiping down the table and the staff still have to come afterwards and do it themselves that's fine at least it's giving them something that they're able to do and empowering in them in that reminiscing reminiscing about interests reminiscing about past experiences and events physical activities things like sleeping raking dancing walking and then there's the more cognitive activities increasingly now there's access to tablet-based devices touch screen tablets and they can be used with people with dementia into the moderate severe stages you go from having something that is more of a cognitive-based app through to having something that's a more sensory-based app for the people that are more progressed in their dementia and then finally it's about setting up the environment so that these opportunities are available to the people and that does not take but you know a moment of care is time to do and allows the person to volitionally engage that's fantastic Alyssa thank you so much and you know it's a wonderful feedback already coming through I think everybody's jotting those down and and as I said look at an easy place to start off the YouTube and the internet but you know I'm sure that if you missed all that grab the recording afterwards um Steve we've had a few a few participants now but also beforehand saying what happens you're quite rarely pointed out about the distance and the the geological aspects of barriers to care certainly there are going to be some occasions where a family may choose to to bring the patient with dementia into the into their own family home now would you advise carers for patients with dementia who might be considering that what would be your okay I guess in consideration of that move and it's a very good question the short answer is you'd be considering something like that when the move would be of net benefit to the system it may well be of benefit to Malcolm it may well be of benefit to Maureen through decreasing the time commitment and care of stress what we don't know and what remains unknown at this point is the impact that it would have on her family with her husband and with her adult son who's living at home so I'd be asking them to weigh the options and certainly involve the other family members in the discussion because those are the unknowns at the moment and when you're considering that question in relation to Maureen and Malcolm when you think about some of the sources of her stress the travel is one the requirement to spend extended periods of time with dad on the weekend all of those are robbing her of time that she would like to use for the leisure time she's had to drop her tennis she's not happy with the standard at which she's maintaining her own home and that's not surprising because currently she's maintaining two homes she's around at dad's doing the gardening and cleaning and things there as well so it would certainly ease in many respects Maureen's care a burden it may also ease some of these behaviors that were flagged in the case study as well if we do accept that the anxiety that Malcolm shows is contingent upon his cognition and the lack of ability to orient himself successfully during the day having him in Maureen's home may well help that there is an adult there during the day and yes there are some complications because it's an adult child who has a learning disability but we are told in the case study that he's intact enough if you like to be able to remain at home unsupervised during the day so the implication to me is that the adult son regardless of his learning disability is functioning at a higher level than Malcolm is so simply being in a home where there is somebody else physically present in order to help orient him might decrease the anxiety and reassure him significantly and therefore stop the phone calls that Maureen's getting during the day the other thing to weigh up in this is you know Maureen's struggling in maintenance of both houses if Malcolm were to move in with her and some of the external supports that are currently being provided to him in his home would be able to potentially be able to be provided to him in Maureen's home if that becomes his primary residence so they are providing direct external supports to Maureen as well so the issue to consider is whether a move such as that would increase or decrease the demands on the system but we need to consider the demands on Malcolm the demands on Maureen and the demands on Maureen's family who arguably don't have any demands on them at the moment because they're not directly involved in the care process dad husband's working 60 hours a week and the adult son's not described as having any responsibilities so the potential for a net downside to the system might be where it impacts on her own family relationships and particularly those with her husband it may be feasible for Malcolm Maureen's obviously the favored child so moving in with the family member it sounds like Maureen's the only feasible alternative but of course we don't know Malcolm's views on a move either so it's weighing the views of the person with the venture of the carer and the net benefit to the system fantastic Stephen thanks thanks so much and you know these are these are just great insights from from everybody thanks so much and not only really to our to our presenters that are noticing actually that the participants here themselves have actually been solving a lot of the questions and it's fantastic to have so much interaction going on between everybody on the chat box and I know you're all from all across Australia and sadly a lot of these things do depend on which state you're in for the access to the services but yeah very very much agreeing with it with all the suggestions that are coming up with and sorry that we can't solve all the administrative issues it's tough enough just to get the sound coming out right apparently but if we can just at least advise you on the places to start then that's a good good way to go so so yeah so thank you very much to to everybody for for your participation tonight I would like to to ask that you all just make sure that you do take the time to fill in the exit survey before we get to the before you log out of the program and so once you actually click close on the screen it should pop up for you we'll then be able to send out your attendance certificates within the next couple of weeks as well that will also have the link to the online resources which we were referring to throughout the presentation. MHPN would like to remind you that we have a series of these webinars throughout the year the next one will be coming up in just under a month on the fifth of June that one will be on collaborative mental health care to support adults on your autism spectrum so it'd be great to see lots of registrations to that one you can find up at www.mhpn.org.au forward slash upcoming webinars and of course the strength of MHPN's activities is it really does bring like-minded individuals into this space where we can all learn from one another and there's a great opportunity for all of us if we're part of a local network so if it is something you think you might be like the be part of or maybe even help chair one or set one up in your area have a look at the link here and and see if there's actually one in your area otherwise we could certainly get in contact to help T1 up so on behalf of all of the all of the the team thank you everybody for your contribution and participation I said if you've missed any of the webinars tonight you'll be able to access it through the recording afterwards but other than that good evening and goodbye thank you very much