Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Pretty heartbreaking call earlier this week with a good friend
of the show, Deb. Now, Deb had spoken to us
about her partner being diagnosed with dementia. And because he's
under the age of 65, she felt the availability of
services was limited comparatively maybe to what someone over the
age of 65 might be eligible for. But we really
(00:20):
wanted to find out a bit more about what services
are available in the Northern Territory and if dementia is
indeed becoming more common in younger people. So joining us
on the show is Susan Williams from Dementia Australia, the
State Manager, State Manager Client Services for the Northern Territory.
Good morning to you, Susan.
Speaker 2 (00:39):
Good morning, Katie.
Speaker 1 (00:40):
Thanks so much for joining us in the studio today. Now,
can you tell me a little bit more about the
work undertaken by Dementia Australia?
Speaker 2 (00:48):
Yeah, so younger onset dementia, as you know, is a
very challenging situation for families. And it's really the same
kinds of dementia as for people who are over the
age of 65. But because of our funding and also
the unique challenges that people with young onset dementia face,
(01:08):
we do have a separate stream of supports for people
with young onset dementia.
Speaker 1 (01:13):
Yeah, right.
Speaker 2 (01:13):
So at Dementia Australia, we recognise that You may be
still working, raising a family, you've got financial concerns like mortgages, etc.
And you haven't really even begun to think about retiring.
So whilst dementia is a difficult diagnosis for anybody, it's
particularly confronting when you're younger. So we wrap around with
(01:37):
family counselling and supports. We help people to navigate services
that they can use access. And we also help them
to understand what they can do for the future. So
helping them get their plans in place for the future
and linking them in with other services that can support them.
Speaker 1 (01:59):
So tell me, Susan, are we finding that dementia is
becoming more common in younger people or is it maybe
more a situation that we're diagnosing it, I don't know,
more readily these days?
Speaker 2 (02:10):
Yeah, you're exactly right, Katie. It's Becoming more well-known, it
used to be that it was quite stigmatised and people,
if we had an expo stall, people would walk past
us and try not to interact. We're seeing a lot
more people talking about dementia, which is fantastic, but there's
still no cure for dementia because it's seen as an
(02:32):
older person's illness. perhaps it doesn't get the same attention.
But in the case of young onset dementia, it really
impacts people's lives. And we really want to make sure
that they have the services in place that they need.
And Deb's right. There are limited, I suppose, social services.
So when you're first diagnosed, if you're older, you can
often start to interact with respite and social groups to
(02:55):
keep you connected with your community. When you're younger, a
lot of your friends are still working hard. They're still
raising families. So for them to even juggle supporting you
can be difficult.
Speaker 1 (03:06):
It's easy to be hard.
Speaker 2 (03:08):
Yes.
Speaker 1 (03:08):
Can you tell me, like, you know, what is the,
what sort of ages, like how young can someone be
diagnosed with dementia?
Speaker 2 (03:15):
Look, we see children with dementia. Fortunately, it's very rare
and it's a genetic condition. But we would see people
in our service in Darwin in their 40s, 50s. It's
very challenging.
Speaker 1 (03:30):
That's so young. Tell me, you know, in terms of
some of the work that you do, like how do people,
you know, how can they engage with Dementia Australia? And,
you know, tell us about some of the, you know,
the different ways that you do sort of help people
to connect and the different stuff you do.
Speaker 2 (03:47):
Well, for a start, they don't have to have an
absolute diagnosis. It can take a little while to go
through that diagnosis process because nobody wants to slap a
dementia diagnosis on you immediately. We want to check whether
it could be another condition, but they're welcome to reach
out to us if they've got changes that they're experiencing
and they need a bit of support around how to
(04:08):
deal with it. Because there are lots of things that
you can do, even at home, to support the person
to live well with dementia. We have a fantastic podcast
going at the moment called Hold the Moment, and it's
presented by Jim Rogers, who's living with young onset dementia.
Speaker 1 (04:24):
Yeah, wow. What a legend.
Speaker 2 (04:25):
So you can definitely still do things. But it's that shock.
And coming to us, we'll talk through things, we'll help
you to navigate and also help you to connect with others.
We organise social cafes. We have a sort of seven-week
education session that people can link together and realise they're
(04:46):
not going through it alone. And I think that's one
of the game changers we see for people is when
they realise that there's someone else going through it, it
helps them to have someone to talk to. Yeah, I
reckon you're spot on.
Speaker 1 (04:59):
Even just having that, you know, somebody else who understands
the situation that you're in and what you might be
going through at that point in your life. Can you
tell me, you know, in terms of How many people
in the Northern Territory that have dementia? Do we have
those kinds of numbers?
Speaker 2 (05:15):
We have an estimate. We think that there's probably just
under 2,000 people living with all types of dementia in
the Northern Territory. Probably about 840 of those in Darwin
and surrounds. That probably means that there could be 200
people living with young onset dementia. So as you can see,
(05:36):
it's quite a niche illness in the Territory. And there's
a lot of other things going on in the Territory.
So we really encourage people to start seeking help early,
to not think that there's nothing you can do. Because
I think that's one of the issues with an illness
like that. People think, well, there's no treatment, there's no cure.
But there actually are treatments and there are things that
(05:59):
we can do to help people to live well. So
getting in touch with Dementia Australia, they can ring our
helpline 24 hours a day, even Christmas Day.
Speaker 1 (06:10):
That's good. Tell me, in terms of, you know, facilities
that are dementia-focused as well, specifically for people under the
age of 65, is that something that we've got in
the NT?
Speaker 2 (06:22):
Yeah, so people who are under the age of 65
living with dementia, we support them to access the NDIS.
So that's the pathway for support.
Speaker 1 (06:32):
Yeah.
Speaker 2 (06:34):
We advocate very strongly to make the NDIS realise that
dementia is a progressive illness. There's a lot of reablement
philosophy in the NDIS, but we're looking really at enablement
when it comes to dementia and to recognise that things
can change in a heartbeat for a person with dementia
and you need to have rapid increase in services at
(06:56):
that point. So there's supported accommodation for people living with dementia.
Speaker 1 (07:01):
Yeah.
Speaker 2 (07:02):
And social groups once they're in the NDIS, which we
can help them to access.
Speaker 1 (07:06):
And I was going to say, I know that that
was something that Deb had said was really difficult, that
that was part of the problem, the difficulties around the
NDIS and applying and causing that extra stress for families
as well. Yes.
Speaker 2 (07:19):
So we will help people go through that process. If
they come back with a plan that they're not very
happy with, we can actually use our connections in the
NDIS to advocate for them further. So we really do
encourage people to reach out to Dementia Australia. We'll help
them in any way we can to get that benefit
(07:39):
out of the NDIS.
Speaker 1 (07:40):
Because I know this is something that obviously this discussion
was sparked earlier in the week by one of our listeners,
but I am sure that there are other people that
are probably in a similar situation. And like you touched
on right from the get-go, no matter what age you are,
You know, when you get a diagnosis like dementia, I
am sure that it would be quite debilitating for a
family in a lot of ways, not knowing what to
(08:01):
do next, not knowing who to contact and not knowing,
you know, where to go.
Speaker 2 (08:06):
Yes, that's right. And it's that additional overlay for people
with young onset dementia where you're juggling so many things
in life. So we encourage them to reach out and
we have a... office in Darwin, but we also provide
support all over the Northern Territory. We travel regionally and remotely.
(08:27):
We're happy to support anyone who, and as I say,
they don't have to specifically have the diagnosis yet. They
can reach out to us and we can start to
help them with their future plans and access to supports.
Speaker 1 (08:41):
I mean, what about some of those enrichment activities and
things that people are able to do that maybe, you know,
if you're stuck in a hospital bed, you know, that's
not possible? potentially.
Speaker 2 (08:52):
Yeah, that's right. So we try to give tips and
tools to families and we also educate our workforce in
the Northern Territory. So our educator goes all over the
Northern Territory, training workforce in how to connect with people
living with dementia.
Speaker 1 (09:11):
Yeah. Hey, Susan, where can people go if they're listening
this morning and they may be thinking, all right, I
do actually need a bit of, my family member does
need a bit of support or we do need some
additional information or we're really struggling with the dementia diagnosis
and the NDIS, how can they get in contact with
you guys? What's the best way to, you know, to
(09:31):
move forward?
Speaker 2 (09:32):
Probably the easiest way is to ring our helpline. It's 1-800-100-500.
As I say, 24 hours a day, seven days a week.
So they don't have to be thinking about it right now.
They can, you know, talk to someone at 10 o'clock
tonight if they want to. They'll connect them through to
the local team and they'll be able to chat with
people about the supports that they can start to access.
(09:55):
They're also welcome to go to our website, dementia.org.au. and
they'll find a whole bunch of resources and information about
what to do next.
Speaker 1 (10:06):
And where to go. Is it tough in the Northern
Territory in terms of, you know, do we have specific
dementia beds and things like that within some of our
healthcare facilities for people that are at that point?
Speaker 2 (10:19):
Yes, we do. So in Palmerston Hospital, we have a
specific ward that supports people living with dementia because sometimes
dementia is not helpful in that you end up needing
to be hospitalised for a period before you can be
ready to move into supported living or residential care. And
(10:40):
as I mentioned, the NDIS supported living accommodation be tailored
towards people living with dementia. But we do encourage... that
organisations really hone their dementia skills because it's really important
to be supported by staff who understand dementia.
Speaker 1 (10:58):
And just with those beds and with some of the facilities,
are they for over 65s only?
Speaker 2 (11:03):
Not necessarily. So there's a mix of resources available out
there for people of all ages in our health system.
But sometimes it's just that overwhelm of feeling that there
is no help, And that's what we want to assure people,
that there is help and we will help them to
get that. So just give us a call on the
(11:25):
1800 100 500 number and we can help them to
start navigating the supports they need.
Speaker 1 (11:30):
Well, Susan, I really appreciate you coming in this morning
and giving us a little bit more detail. I think
that sometimes, I don't know whether it's rightly or wrongly,
but even as you said, you know, at different times
when you've had stalls set up at events and you know,
people walking, sort of avoiding the dementia stand. And you
think it impacts so many people. And so I think
if you can break down that stigma as well, if
we can all talk about it a little bit more often,
(11:51):
I hope that that is something that, you know, that
will hopefully make a bit of a difference, even with
not feeling alone when you go through something like this.
Speaker 2 (12:00):
Yeah, that's right. And through our Dementia Friendly Communities program,
we have a Dementia Alliance. It's very active in Darwin, Palmerston,
even Adelaide River. And they're aiming to be that grassroots
group who destigmatise dementia, people that can still live well.
They do a walk on the nightcliff foreshore every fortnight.
So you can also get in touch with us to
(12:22):
find out more about what they do.
Speaker 1 (12:23):
Yeah, awesome. All right, well, lovely to speak with you
this morning. Susan Williams, Dementia Australia's State Manager of Client
Services here in the Northern Territory. Thank you so much
for your time. Thanks, Katie. Thank you.
Pretty heartbreaking call earlier this week with a good friend
of the show, Deb. Now, Deb had spoken to us
about her partner being diagnosed with dementia. And because he's
under the age of 65, she felt the availability of
services was limited comparatively maybe to what someone over the
age of 65 might be eligible for. But we really
(00:20):
wanted to find out a bit more about what services
are available in the Northern Territory and if dementia is
indeed becoming more common in younger people. So joining us
on the show is Susan Williams from Dementia Australia, the
State Manager, State Manager Client Services for the Northern Territory.
Good morning to you, Susan.
Speaker 2 (00:39):
Good morning, Katie.
Speaker 1 (00:40):
Thanks so much for joining us in the studio today. Now,
can you tell me a little bit more about the
work undertaken by Dementia Australia?
Speaker 2 (00:48):
Yeah, so younger onset dementia, as you know, is a
very challenging situation for families. And it's really the same
kinds of dementia as for people who are over the
age of 65. But because of our funding and also
the unique challenges that people with young onset dementia face,
(01:08):
we do have a separate stream of supports for people
with young onset dementia.
Speaker 1 (01:13):
Yeah, right.
Speaker 2 (01:13):
So at Dementia Australia, we recognise that You may be
still working, raising a family, you've got financial concerns like mortgages, etc.
And you haven't really even begun to think about retiring.
So whilst dementia is a difficult diagnosis for anybody, it's
particularly confronting when you're younger. So we wrap around with
(01:37):
family counselling and supports. We help people to navigate services
that they can use access. And we also help them
to understand what they can do for the future. So
helping them get their plans in place for the future
and linking them in with other services that can support them.
Speaker 1 (01:59):
So tell me, Susan, are we finding that dementia is
becoming more common in younger people or is it maybe
more a situation that we're diagnosing it, I don't know,
more readily these days?
Speaker 2 (02:10):
Yeah, you're exactly right, Katie. It's Becoming more well-known, it
used to be that it was quite stigmatised and people,
if we had an expo stall, people would walk past
us and try not to interact. We're seeing a lot
more people talking about dementia, which is fantastic, but there's
still no cure for dementia because it's seen as an
(02:32):
older person's illness. perhaps it doesn't get the same attention.
But in the case of young onset dementia, it really
impacts people's lives. And we really want to make sure
that they have the services in place that they need.
And Deb's right. There are limited, I suppose, social services.
So when you're first diagnosed, if you're older, you can
often start to interact with respite and social groups to
(02:55):
keep you connected with your community. When you're younger, a
lot of your friends are still working hard. They're still
raising families. So for them to even juggle supporting you
can be difficult.
Speaker 1 (03:06):
It's easy to be hard.
Speaker 2 (03:08):
Yes.
Speaker 1 (03:08):
Can you tell me, like, you know, what is the,
what sort of ages, like how young can someone be
diagnosed with dementia?
Speaker 2 (03:15):
Look, we see children with dementia. Fortunately, it's very rare
and it's a genetic condition. But we would see people
in our service in Darwin in their 40s, 50s. It's
very challenging.
Speaker 1 (03:30):
That's so young. Tell me, you know, in terms of
some of the work that you do, like how do people,
you know, how can they engage with Dementia Australia? And,
you know, tell us about some of the, you know,
the different ways that you do sort of help people
to connect and the different stuff you do.
Speaker 2 (03:47):
Well, for a start, they don't have to have an
absolute diagnosis. It can take a little while to go
through that diagnosis process because nobody wants to slap a
dementia diagnosis on you immediately. We want to check whether
it could be another condition, but they're welcome to reach
out to us if they've got changes that they're experiencing
and they need a bit of support around how to
(04:08):
deal with it. Because there are lots of things that
you can do, even at home, to support the person
to live well with dementia. We have a fantastic podcast
going at the moment called Hold the Moment, and it's
presented by Jim Rogers, who's living with young onset dementia.
Speaker 1 (04:24):
Yeah, wow. What a legend.
Speaker 2 (04:25):
So you can definitely still do things. But it's that shock.
And coming to us, we'll talk through things, we'll help
you to navigate and also help you to connect with others.
We organise social cafes. We have a sort of seven-week
education session that people can link together and realise they're
(04:46):
not going through it alone. And I think that's one
of the game changers we see for people is when
they realise that there's someone else going through it, it
helps them to have someone to talk to. Yeah, I
reckon you're spot on.
Speaker 1 (04:59):
Even just having that, you know, somebody else who understands
the situation that you're in and what you might be
going through at that point in your life. Can you
tell me, you know, in terms of How many people
in the Northern Territory that have dementia? Do we have
those kinds of numbers?
Speaker 2 (05:15):
We have an estimate. We think that there's probably just
under 2,000 people living with all types of dementia in
the Northern Territory. Probably about 840 of those in Darwin
and surrounds. That probably means that there could be 200
people living with young onset dementia. So as you can see,
(05:36):
it's quite a niche illness in the Territory. And there's
a lot of other things going on in the Territory.
So we really encourage people to start seeking help early,
to not think that there's nothing you can do. Because
I think that's one of the issues with an illness
like that. People think, well, there's no treatment, there's no cure.
But there actually are treatments and there are things that
(05:59):
we can do to help people to live well. So
getting in touch with Dementia Australia, they can ring our
helpline 24 hours a day, even Christmas Day.
Speaker 1 (06:10):
That's good. Tell me, in terms of, you know, facilities
that are dementia-focused as well, specifically for people under the
age of 65, is that something that we've got in
the NT?
Speaker 2 (06:22):
Yeah, so people who are under the age of 65
living with dementia, we support them to access the NDIS.
So that's the pathway for support.
Speaker 1 (06:32):
Yeah.
Speaker 2 (06:34):
We advocate very strongly to make the NDIS realise that
dementia is a progressive illness. There's a lot of reablement
philosophy in the NDIS, but we're looking really at enablement
when it comes to dementia and to recognise that things
can change in a heartbeat for a person with dementia
and you need to have rapid increase in services at
(06:56):
that point. So there's supported accommodation for people living with dementia.
Speaker 1 (07:01):
Yeah.
Speaker 2 (07:02):
And social groups once they're in the NDIS, which we
can help them to access.
Speaker 1 (07:06):
And I was going to say, I know that that
was something that Deb had said was really difficult, that
that was part of the problem, the difficulties around the
NDIS and applying and causing that extra stress for families
as well. Yes.
Speaker 2 (07:19):
So we will help people go through that process. If
they come back with a plan that they're not very
happy with, we can actually use our connections in the
NDIS to advocate for them further. So we really do
encourage people to reach out to Dementia Australia. We'll help
them in any way we can to get that benefit
(07:39):
out of the NDIS.
Speaker 1 (07:40):
Because I know this is something that obviously this discussion
was sparked earlier in the week by one of our listeners,
but I am sure that there are other people that
are probably in a similar situation. And like you touched
on right from the get-go, no matter what age you are,
You know, when you get a diagnosis like dementia, I
am sure that it would be quite debilitating for a
family in a lot of ways, not knowing what to
(08:01):
do next, not knowing who to contact and not knowing,
you know, where to go.
Speaker 2 (08:06):
Yes, that's right. And it's that additional overlay for people
with young onset dementia where you're juggling so many things
in life. So we encourage them to reach out and
we have a... office in Darwin, but we also provide
support all over the Northern Territory. We travel regionally and remotely.
(08:27):
We're happy to support anyone who, and as I say,
they don't have to specifically have the diagnosis yet. They
can reach out to us and we can start to
help them with their future plans and access to supports.
Speaker 1 (08:41):
I mean, what about some of those enrichment activities and
things that people are able to do that maybe, you know,
if you're stuck in a hospital bed, you know, that's
not possible? potentially.
Speaker 2 (08:52):
Yeah, that's right. So we try to give tips and
tools to families and we also educate our workforce in
the Northern Territory. So our educator goes all over the
Northern Territory, training workforce in how to connect with people
living with dementia.
Speaker 1 (09:11):
Yeah. Hey, Susan, where can people go if they're listening
this morning and they may be thinking, all right, I
do actually need a bit of, my family member does
need a bit of support or we do need some
additional information or we're really struggling with the dementia diagnosis
and the NDIS, how can they get in contact with
you guys? What's the best way to, you know, to
(09:31):
move forward?
Speaker 2 (09:32):
Probably the easiest way is to ring our helpline. It's 1-800-100-500.
As I say, 24 hours a day, seven days a week.
So they don't have to be thinking about it right now.
They can, you know, talk to someone at 10 o'clock
tonight if they want to. They'll connect them through to
the local team and they'll be able to chat with
people about the supports that they can start to access.
(09:55):
They're also welcome to go to our website, dementia.org.au. and
they'll find a whole bunch of resources and information about
what to do next.
Speaker 1 (10:06):
And where to go. Is it tough in the Northern
Territory in terms of, you know, do we have specific
dementia beds and things like that within some of our
healthcare facilities for people that are at that point?
Speaker 2 (10:19):
Yes, we do. So in Palmerston Hospital, we have a
specific ward that supports people living with dementia because sometimes
dementia is not helpful in that you end up needing
to be hospitalised for a period before you can be
ready to move into supported living or residential care. And
(10:40):
as I mentioned, the NDIS supported living accommodation be tailored
towards people living with dementia. But we do encourage... that
organisations really hone their dementia skills because it's really important
to be supported by staff who understand dementia.
Speaker 1 (10:58):
And just with those beds and with some of the facilities,
are they for over 65s only?
Speaker 2 (11:03):
Not necessarily. So there's a mix of resources available out
there for people of all ages in our health system.
But sometimes it's just that overwhelm of feeling that there
is no help, And that's what we want to assure people,
that there is help and we will help them to
get that. So just give us a call on the
(11:25):
1800 100 500 number and we can help them to
start navigating the supports they need.
Speaker 1 (11:30):
Well, Susan, I really appreciate you coming in this morning
and giving us a little bit more detail. I think
that sometimes, I don't know whether it's rightly or wrongly,
but even as you said, you know, at different times
when you've had stalls set up at events and you know,
people walking, sort of avoiding the dementia stand. And you
think it impacts so many people. And so I think
if you can break down that stigma as well, if
we can all talk about it a little bit more often,
(11:51):
I hope that that is something that, you know, that
will hopefully make a bit of a difference, even with
not feeling alone when you go through something like this.
Speaker 2 (12:00):
Yeah, that's right. And through our Dementia Friendly Communities program,
we have a Dementia Alliance. It's very active in Darwin, Palmerston,
even Adelaide River. And they're aiming to be that grassroots
group who destigmatise dementia, people that can still live well.
They do a walk on the nightcliff foreshore every fortnight.
So you can also get in touch with us to
(12:22):
find out more about what they do.
Speaker 1 (12:23):
Yeah, awesome. All right, well, lovely to speak with you
this morning. Susan Williams, Dementia Australia's State Manager of Client
Services here in the Northern Territory. Thank you so much
for your time. Thanks, Katie. Thank you.
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