So it's my pleasure now to introduce Madeleine Ranola, who's a clinical nurse consultant.

Madeleine has a diverse background in neuroscience, nursing and clinical research

with a particular specialty in neurodegenerative diseases,

Parkinson's disease, Lewy body and Alzheimer's disease, as well as some other

very exciting neurodegenerative processes.

And today she's going to talk to us about support needs in dementia and Parkinson's disease.

So welcome, Madeleine. Thank you. Thank you.

Yes, so my background is nursing and

over the years I have had the great privilege of getting to care for and get

to know lots of people with Parkinson's disease and dementia and be able to

provide continuity of care for these patients and families over prolonged periods of time,

which is really one of the great parts of working in neurology.

So what I'd like to do today is to share some insights that I've gained over

the years about the needs that are specific to people and families living with

Parkinson's and dementia,

addressing some of the challenges that occur in sort of younger onset diagnosis

as well, because of course these people are going to be living longer with these conditions.

Physicians, looking at advanced care planning,

looking at NDIS and my age care and just hopefully giving some tips and tricks

for how to sort of navigate the minefield, which is these, you know,

systems that we have in place that we're grateful for, but they're very clunky

and can be quite frustrating.

So just sort of trying to help you kind of direct people to support in getting

through these systems and getting the supports they need in a timely manner

and then just talking a little bit about residential care and palliative care as well.

So just some disclosure there.

So with dementia, you know, there are many different types of dementia.

So it's really important for people to be able to get a good understanding of

the type of dementia that they have and what they can expect with their condition.

They want to know how they can be able to sort of live well with this condition

as well. so people are becoming a lot more vocal about what they need to be

able to navigate their journey through this illness.

So they are needing to have, you know,

good education about the pharmacological treatments as well as the non-pharmacological

treatments as well and this becomes very important once people sort of move

into the stage of dementia where behaviours and psychological symptoms can start

to impact the care and their ability to remain at home.

They also need to get information that's tailored to their individual needs

and their preferences as well.

So a whole host of things go into people being able to live well with their

dementia, so we really need to be able to tailor it sort of individually for that.

So, you know, part of that tailoring also comes down to sort of considering

timing of discussion of prognosis and also the introduction of psychoeducation as well.

By way of support groups and, you know, fitness programs and day programs as

well, there really has to be a sort of a readiness,

for that potential, I guess, to come across people that are in more advanced

stages of disease as well.

So we do want to let people know of these services but also just be a little

bit cautious of, you know, when they actually are exposed to these groups.

And then we want to be able to identify and

manage acceptable levels of risk as well because

of course with varying degrees of severity

with their dementia you know people are allowed to live at home with a degree

of risk but it's about identifying what's what are safe levels and and what

can be done to maintain their safety within the home and this is a natural sort

of tug-of-wall between caregivers and the person with dementia as well.

So it requires a lot of thought and, you know, sensitive discussion as well.

And then, of course, there's needs for financial and social support.

We need to address the caregiver burden as well in dementia care.

And as I mentioned, there are lots of influences on people being able to live well dementia.

So not just their physical and psychological fitness, but also,

you know, their levels of social support and connectedness.

Financial means and also relationships and family dynamics within families as well.

So we're very fortunate in Australia to have a number of supports available

to people with dementia.

So Dementia Australia is really the peak body for dementia support and they've

got a number of services that you will hear about later today from your Dementia

Australia representative.

So I won't go into too much about their programs, but it really,

as I said, is the peak body.

So there are a number of fact sheets, education programs, support groups available

through Dementia Australia.

And that's really an organisation that I would link people in even at time of

diagnosis for initial supports.

So I'll just move on to Dementia Support Australia, which is an organisation

which you would sort of bring into the mix when the psychological and behavioural

issues become a problem for people in their home.

So they've got a number of services available.

So the Dementia Behaviour Management Advisory Service is a service that can

actually come into patients' homes and also residential care facilities.

They can assess change behaviours and come up with strategies to manage those

change behaviours as well.

So they will go into patients' homes, care facilities, come up with a behaviour support plan.

They'll have a follow-up visit to see how those strategies are in place.

And then that's sort of the end of that interaction with that service.

But you can call on that service numerous times throughout the journey.

So for patients that have more severe behaviours, they have a behaviour response

team which can come out to anywhere in Australia within 48 hours with a nurse

consultant and a psychogeriatrician and a patient.

Again, come up, you know, try and understand reasons behind their behaviours

and then come up with a support plan as well.

So they can also provide practical support as well by way of staffing to allow

the care facilities time to put strategies in place.

So a very worthwhile process.

Service to tap into if you're having problems with your residents,

in residential care particularly.

So the Specialist Dementia Care Program actually provides short-term inpatient

care of people that are having difficult behaviours with their dementia.

So that requires assessment and then admission into a special dementia care

facility for a period of time and then they will help to transition the person

back into their care facility.

And then they've also got a GP advice service as well, which will actually link

you up with a psychogeriatrician who will discuss the case with you,

come up with strategies,

a written report, and then just provide, you know, ongoing support to you as well.

So it's a very worthwhile service as well because we, you know,

ideally if we can keep people out of hospital, it's better to do that.

So very worthwhile service to tap into to be able to sort of prevent those crises

for these patients and their families.

And then in the community, there are also lots of outreach services,

dementia cafes, lots of dementia friendly outdoor spaces as well where people

and carers can gather together.

There's creative ageing programs as well, such as the one in the art gallery.

So they offer tours and workshops. And then there are lots of day centres and

wellness groups as well that can encourage that sort of socialisation and give

people opportunities to, you know,

stay connected but outside of the caring facility.

So with Parkinson's disease, themes that come up for them are,

again, needing to know more about their Parkinson's symptoms.

You know, they have the challenge of a changing body with the onset of different motor symptoms as well.

With that comes loss of independence, changing roles and responsibilities.

So they're also seeking, you know, formal knowledge about their symptoms,

treatments and how their Parkinson's disease is going to progress.

Um, again, legal and financial issues need to be addressed as well.

There can be quite a bit of social isolation, um, as well, because it's,

you know, although it's a full body disease, predominantly the symptoms are

motor and they're symptoms that can be visibly seen as well.

So we are having to think about sort of long-term how we can,

um, ensure people are, you know, have dignity and comfort as the disease progresses.

And of course they've got, you know, there's quite a bit of caregiver burden

as well at end stage of Parkinson's as well.

So these are themes that come up, you know, in studies that look at,

you know, where there are gaps in support for people with Parkinson's disease.

But we are fortunate, again, to have a number of services available for your Parkinson's patients.

So in New South Wales, we've got Parkinson's New South Wales.

They provide support groups, fact sheets, counselling and an info line as well,

which is manned by nurses.

Parkinson's Australia is the bigger sort of overarching organisation.

So for people sort of in other areas of Australia, they can ring the info line

and then be linked up with their state-based organisation.

There's the Shake It Up Foundation as well, which is the Australian Parkinson's

Foundation, closely linked with the Michael J. Fox Foundation.

They also provide a great deal of information, promote research,

fund research, and then also are very active in raising awareness and fundraising

for Parkinson's disease as well.

There's the Michael J. Fox Foundation as well, very good resource for people

to stay sort of up to date with the latest treatments and research.

And for those patients that are particularly interested in finding out about

Parkinson's research, they can link themselves up to the FOX Trial Finder, which is a Michael J.

Fox initiative and that basically enrols them in a portal that can actually

match people up with observational studies and clinical trials on Parkinson's disease,

depending on their location and their history as well.

So that's also something that people who are interested in being controls can

link themselves up with also.

And then there are a number of multidisciplinary Parkinson's rehab and reconditioning

programs as well, offered in your public and private hospitals also.

So I would encourage, you know, people, if they can, to participate in these

sort of multidisciplinary programs at least once in their journey.

It's an easy way to sort of link in with allied health as well.

It's actually quite difficult for people to access social work,

for example, in a community outpatient setting.

So, you know, if on the tail end of an admission they, you know,

would consider a little bit of reconditioning, I would encourage it because

it sort of gets them into that system of allied health.

Okay. There are also a number of Parkinson's exercise programs as well.

So if people are interested in boxing, there's knockout Parkinson's disease,

dancing programs, choirs. of course PD Warrior, which is a well-known Parkinson's exercise program.

But for people who aren't ready or don't feel like the group exercise programs are for them,

there's also Power for Parkinson's, which is actually a YouTube-based online,

on-demand Parkinson's program for exercise.

So they actually offer exercise videos people can do in their own time,

either sitting or standing.

So that's an option as well for people that want to stay active but,

you know, don't want to join the group classes.

There's also a community for active people with Parkinson's called Shake the Fun Up.

And then I'll just mention as well for people needing financial advice who may

not have the means for, you know, private, you know, financial planner.

Within Services Australia, there are financial information services as well.

So specifically for the younger onset patients, so your patients diagnosed with

Parkinson's or dementia younger than 65, you know, they are in their prime years.

A lot of them, you know, would have been planning to work, you know, up to 60 or beyond.

So this is a huge implications for them.

Sometimes they have delayed treatment and support because it can take a bit

of time to get the right diagnosis.

So this, of course, has an impact on family relationships, work finances,

social life, the sense of self as well.

And this is when the future planning really needs to come into play,

you know, because they're going to have a longer time living with this condition

and they're going to have to plan how they'll be able to do that and do that well.

So ideally, they should be linked up to young onset dementia and Parkinson's

disease services. and also age-appropriate health and social services as well.

And there are apps and social media groups as well that can sort of give them

that sense of a younger onset community.

And just a word of caution with the support groups as well,

just to be careful that, you know, when they do sort of seek out the groups,

just to make sure that they're ready for that possibility of seeing people at

more advanced stages of their disease.

As well, everyone presents with these diseases differently.

They're all managed differently. So there just is that potential for a bit of

upset if people aren't ready or prepared for that.

So it's just important when they're seeking out these events to make sure,

you know, that it is young onset if it's young onset.

And, yeah.

So with advanced care planning, important to have discussions early,

linking people in with ACAT and NDIS and allied health as soon as possible.

A lot of people might think that they don't need it yet and they're managing well.

But what I would say is it's actually really difficult to get care in when you need it.

So they really do need to sort of, you know, at least consider a linkage and

an assessment, even if it's, you know, they're not necessarily going to take

anything up now. But it's also a matter of, you know, if they don't know, they don't know.

So it's better to have an assessment and know what's available.

Just a word about having power of attorney and guardianship in place as well.

So, you know, patients can be well for a very long time, but it only takes a

fall or an acute illness, you know, for things to change the trajectory for them.

So important to have these things in place and to have people appointed that,

you know, understand the disease and what the responsibilities are as well when

they need to actually take up.

That responsibility. I believe there's

a capacity session later on this afternoon with Nora Breen as well.

So important to consider that, you know, capacity is decision specific as well.

So it's very different, you know, making a $500 purchase is a different capacity to,

you know, the capacity to sell off your family home or, you know,

make decisions about shares and the family business So, it's really important

that people have appropriate assessment and seek the legal advice as well.

And with the advanced care directives, again,

another, you know, difficult discussion, but it is important to have those discussions

early to make sure families are on the same page and to make sure that patients'

wishes are honoured as well while they have the capacity to decide.

So again, not leaving it to time of crisis where, you know, you may not be able

to make things happen as someone wishes because you don't know what their wishes are.

So important to have those discussions early.

So with NDIS, so just keeping in mind that the National Disability Insurance

agency is an insurance agency,

okay, so they are supposed to be able to provide all of these supports to patients

but it's actually very difficult to qualify for it.

So the take-home here is to get the language right when you are providing your

evidence of support for the need for these.

Resources. And by getting the language right, it means actually discussing how

the condition and the impairments impact on your patient's functional capacity.

So not broad statements about Parkinson's or dementia, but specifically how

it's impacting on your patient's functionality within the home.

Because, yeah, the assessors, I'll be honest, are not necessarily medically trained.

So the forms that they've given you to fill out a very much ticker box and sometimes

if you don't give enough detail,

then they clearly won't meet the criteria and then it means a no from the NDIS

and then it means another protected period of trying to appeal this.

So we need to get the language right in the first instance so that it doesn't

remain in someone's intray for a number of months and become a no.

Same thing goes with my aged care.

So there are huge changes that are about to occur actually on the 1st of November.

So support at home is going to replace

home care packages and short-term restorative care programs as well.

So these will include restorative care pathway, assistive technology,

home modification schemes and the end of life pathway as well.

So rather than the four levels of care, there's actually going to be eight now

with very defined budgets that are going to be proportionate to people's needs as well.

So providers are going to have to be a lot more transparent about how they're spending funds.

The funds will be distributed quarterly as well rather than yearly.

So they are going to have to be up to date with their reporting and they'll

be accountable to our patients who are their clients about how they're spending the funds.

So they can't roll over more than a thousand dollars from each term as well.

So if they haven't spent it wisely and your patients aren't feeling like They're

getting the supports that they need.

They are within their rights to change providers.

Not a lot of patients realise that or are prepared to do that,

but they are within their rights to do that.

And I would encourage them to do that if they're not getting the supports that they need.

A lot of people in the MyAgeCare system and NDIS system are being manipulated

by their providers as well who just want to keep their business,

but then it's not useful to the patient.

So they've just got to be a little bit brave about what is essentially their funding.

So this process should become easier with this new system, but of course they'll

be teething because it'll be new.

But I would just encourage them to stay on top of it and keep following up with

phone calls to My Aged Care to find out where they are in the process.

I find a lot of people are waiting for, they're not quite sure what,

and they wait for months and months and months and then, yeah.

So with residential care the place to

start with is with my aged care and with their social

workers as well so for the patients that are do become inpatients for you know

whatever reason I would suggest that they speak to a social worker while in

hospital because as I mentioned before there is a lack of sort of outpatient

social work available there's also the carer gateway,

The DPS Guide to Aged Care is actually a booklet that actually lists all of

the care homes and their specialty units within those.

And then there are Aged Care Placement Assistant Services as well.

So just a few things to consider, for people to consider when they're choosing

their residential care facilities is to actually visit at busy times,

so meal times and activity times, and just see how patients are cared for when

the staff are, you know, at their peak of busyness.

Okay, and palliative care, again, there's a number of resources there as well

to help people plan for end-stage disease.

Advanced Care Planning Australia and Healthy End-of-Life Planning help CHOOL,

you know, the primary goal is to uphold quality of life at their end of care.

So really helping them, supporting them in their decision-making in those end stages.

So the key takeaways, providing people reliable information on their condition,

what to expect, their treatments and their entitlements as well,

giving them the practical assistance in navigating My Aged Care NDIS and signposting

those advocacy and carer support services.

You know, just directing people as well to sort of have their legal things in order.

And then just, again, talking about timing because the normal for these patients

is going to change at many time points in their journey.

So we want to be responsive to that, you know, acknowledge their capacity and

their capability to cope with each stage. and then promote support that's going

to address what the priority issues are at that stage of disease.

That's it.

Thank you, Madeleine. Obviously, I think as medical practitioners,

sometimes we get wound up with medications and tablets and pills and potions.

Certainly patients get very interested in that sort of therapy as well,

but the sort of supports that Madeleine is talking about are absolutely critical.

So in the world of dementia, we haven't had disease-modifying treatments until

now, so that's been the main sort of mainstay of our therapy,

so really critical stuff.