Help at Home advice

00:00:00 Kate
Welcome to Age Old Problems: New Aged Care, a podcast by Helping Hand that offers information and advice to help you find and access the right aged care services. This podcast was recorded on Kaurna land.

00:00:22 Kate
Hello, I’m your host Kate Holland. In this episode, our very first, we’re going to learn all about home care: how the system works, how to access it, what’s on offer, and the right questions to ask in order to have your needs met. Joining me to uncover all that information is Jo Carter-Jones, Group Manager of Retirement Living and Housing at Helping Hand, and one of our lovely home care clients Rex. Thank you both for joining us.

00:00:46 Rex
Thank you

00:00:46 Jo
Thank you

00:00:48 Kate
Now before we start getting into the finer details, I’d just like to briefly explain the different type of government funding for help at home services. The Commonwealth Home Support Programme and Home Care Packages are both Australian government initiatives designed to support older Australians to stay living independently at home, however they cater to different levels of need and operate differently.

00:01:10 Kate
The Commonwealth Home Support Programme is designed for older people who need some assistance with daily tasks to make to maintain their independence – it provides entry level support services on a short term or ongoing basis. Typical services include basic help at home such as gardening, cleaning, and social support. Home Care Packages are for older people with more complex care needs – they provide a higher level of support and more comprehensive care, such as nursing, and allied health services. So with those definitions in mind Jo, perhaps you can begin by explaining who is eligible for Home Care Services and whether they need an assessment.

00:01:49 Jo
So there are different types of assessment based on your needs, so the eligibility criteria really refers to two parts. So the first part is age-related – essentially you need to be either 65 years or older to access and be eligible for services, or 50 years or older if you are an Aboriginal or Torres Strait Islander. The second part to the criteria is based on your needs, so you might be that you’ve noticed that you can’t do things as easily as you used to, for example hanging out the washing, or changing the bed. It might be that you’ve had a recent fall, or a trip to hospital, or had a recent medical diagnosis that has impacted your health, and you’re not feeling as well as you used to.

00:02:31 Kate
Now I know there are a lot of different types of services available, we can’t run through all of them, but can you give us an overview of the sort of things people might seek out?

00:02:38 Jo
Yes, you’re right there are lots and lots of services available to help support people remain living safely at home. It’s easy to put them in categories I find, so if we look at assistance with home tasks – you can get some assistance with some cleaning, or some shopping. If we look at personal care – you can get some assistance with your showering, and your dressing. You can have a whole range of services to help you remain well and look after your wellbeing – and those things include access to podiatry services, attending exercise groups to improve your strength and balance.

00:03:15 Jo
And there are also a range of services that can help you to get out of the home, such as transport assistance, and attending social groups, which are really good to help support you talk to people and keep in touch with your community.

00:03:29 Kate
So there are some really great things that people can access, but sometimes starting the process can feel a bit intimidating to people. Do you have some key suggestions for the things that they should keep in mind when they first start?

00:03:49 Jo
Yes, I can make a few recommendations that will make it a bit easier as you commence the process of accessing some services. The first thing I would recommend is, before you phone My Aged Care, if you decide to give them a call to talk about a need for services, is make sure you have a pen and paper handy and you have your Medicare card ready to go. They will ask you for that information and it’s really helpful if you’ve got that ready to go so you don’t have to jump up and grab things as they ask the questions.

00:04:13 Jo
Part of that process will be them giving you what’s called your AC number, your Aged Care number, and it’s helpful if you have that pen and paper ready so you can write it down, because when you ring them again they might ask you for that number, so it’s helpful to have that ready. The other key things I would suggest is, have a think about who you would nominate as a representative who can talk to My Aged Care on your behalf. It’s really great if you can do it yourself, but it is helpful to have someone else that can call and talk about you. Because, for example, if you’re in hospital, or something happens, and you’re not able to make that call yourself, then a family member or a neighbour or a loved one can make that call. And that definitely helps to make the process smoother and easier, especially if things go wrong.

00:05:05 Jo
I would also say, if you are waiting for a phone call from My Aged Care, or from the assessment team or from a service provider, don’t wait too long. If you think you’ve waited a week or two and you haven’t received a call, and you’re wondering what’s happening, don’t just assume that there’s other people in the queue and they’ll get to you eventually – pick up the phone, call My Aged Care, ask for an update. Sometimes things can take a while, but it’s really good to check in and just see what’s happening to make sure things keep moving along.

00:05:34 Kate
And I assume when you do make those phone calls, it’s OK to ask questions and really probe what would suit you best to meet your needs?

00:05:41 Jo
Absolutely. Ask lots of questions, don’t hesitate to ask questions. I would also recommend having a look at the My Aged Care website if you have access to that. It does have lots of information. But phoning the My Aged Care contact centre and asking questions is also really helpful. You should have someone there that is really well briefed with the information and can answer all of your questions.

00:06:04 Kate
And we will have the website details and those phone number details in our show notes so we can make it easy for people to go and look that up after listening to the podcast. Now Reg, I think it’s important we come to you now, because you’re someone who has dealt with this process, and it wasn’t too intimidating for you.

00:06:20 Reg
No, as a matter fact, I had no expectations of the process – I didn’t even know it existed two years ago. I had a conversation with other people in the retirement village that I was in – we were having a little bit of difficulty at home, or I was having difficulty at home, and it was suggested that I ring Aged Care and look to get an assessment, which is exactly what I did, exactly as you’ve just heard. Initially I thought it was going to be daunting, whilst the process is longer than I anticipated – I was told the process may take five to six months to get an aged care assessment – it turned out that it was shorter than that, and I found that dealing with the Aged Care people was quite easy, I found them all approachable. As a matter fact I haven’t got a complaint in two years of dealing with the Aged Care people. With Helping Hand I have no complaint at all, I found the process easy.

00:07:21 Kate
And what services are you accessing?

00:07:23 Reg
I’m actually accessing domestic help, I’m accessing physio, I have a falls alarm. We’ve been provided the cards for transport if needed. Although my wife still drives, I no longer drive, I gave up my licence earlier on this year.

00:07:42 Kate
Can I ask the delay in you accessing these kinds of services, is that because you thought it wasn’t something that you will be given access to, or that you thought you didn’t need, or you just didn’t know about it full stop?

00:07:53 Reg
I suppose you get tied up in other programs that you get through your GP, through specialists, etc, and I found that that process rarely mentioned the Aged Care Packages that are available, and rarely mentioned the services that are provided through those that work within those packages like Helping Hand. I found the knowledge I got was sitting back and listening to those who are doing the assessments about what’s available, was more important than listening to other people’s advice about those processes – other people being people who had nothing to do with the services that are being provided. So I found the process excellent.

00:08:37 Kate
Do you think some people are resistant to accessing these services due to pride, and maybe being worried about people coming into their home?

00:08:44 Reg
I think both of those play a part. I think gender and history, given the age of people, plays a part. Males are reticent to give up their independence, to look at people helping them, because they see it as impacting upon their male ego. So I found it difficult in the initial stage to seek an assessment, but when I did, I suddenly realised there are a lot of people out there who can help you, and those people have helped myself and my wife immensely. I think it’s an ego thing, but I think it’s a gender thing, especially for men. The other thing is I think a lot of people listen to their families a little bit too much. I think sometimes it’s nice to go to somebody who is independent of the family to get the right advice.

00:09:36 Kate
And what has the process and help meant for your life, and would you recommend Helping Hand home care to other people?

00:09:42 Reg
What I found is that I get a lot of support through Helping Hand. The physio – I’ve had two physios with Helping Hand since I’ve been on the plan, and both of them have been excellent. If I can say it this way – I used to get headaches on a regular basis, and I had numbness throughout most of my body on numerous occasions. Through the MS Society and through Aged Care I now get my back physio-treated regularly. And because of the treatment on my spine, I rarely have headaches now – I have numbness, but I rarely have headaches.

00:10:19 Reg
Without Helping Hand I wouldn’t have known that that was an avenue available to me. I really do believe that at the moment my wife and I am much happier in the home environment, than what we were when we were living away from the help that you get from Helping Hand and from Aged Care. Both areas have been fabulous. I can’t believe that the response I got to some of my questions were so quick, and it cleared up a lot of problems.

00:10:50 Kate
So if people were going to take away one thing from listening to this podcast, one really solid piece of advice, as a recap, what would your one takeaway be? Jo?

00:10:59 Jo
Be patient, the process can take a while before you get to the commencement of your services, but the vital and important role that those services can play, as Reg has described, in keeping you safe and well and happy at home are so important, and so critical to helping you remain living at home, which in my experience is what the majority of people wanna do. There is no place like home. So if you need a little bit of help to help you remain living at home, then I think that’s a really great option and I would certainly advise you go ahead and start the process.

00:11:35 Kate
What about you Reg, what do you think they should take away?

00:11:40 Reg
I think most people should listen to the experts, and sit down, relax, and let the process take its course. Nothing’s ever done overnight, and I think just waiting, pausing, seeking advice, and letting the process take its course, is the only way to go. It’s been effective for us and it’s made our life a lot happier.

00:12:02 Kate
That’s wonderful, thank you so much for sharing your expertise and your experience.

00:12:07 Reg
No worries, thanks very much.

00:12:08 Kate
Thank you. For more information on Helping Hand and their services please head to www.helpinghand.org.au. You can also call their home care number 1300 444 663.

00:12:23 Kate
Please remember – you understand your needs better than anyone. Take the time to contact one of our friendly team to find out how we can help.

00:00:00 Kate
Welcome to Age Old Problems: New Aged Care, a podcast by Helping Hand that offers information and advice to help you find and access the right aged care services. This podcast was recorded on Kaurna land.

00:00:22 Kate
Hello, I’m your host Kate Holland. In this episode we’re going to learn more about allied health, and in particular, occupational therapy or OT as lots of people seem to call it. It seems to be an area of health that’s quite unfamiliar to many as well, but not to this episode’s guest Amanda Bailey, because she is Occupational Therapy Manager in Home Care at Helping Hand. Thanks for joining me.

00:00:43 Amanda
Thank you for having me.

00:00:44 Kate
Now OT sits under allied health, so I’m just wondering can you start by describing what allied health actually is. And I think Helping Hand has its own allied health team doesn’t it, maybe you can describe some of the things that Helping Hand offers?

00:00:54 Amanda
Yes, Helping Hand has a broad allied health team, so we have exercise physiologists, physiotherapists, occupational therapists, social workers, podiatrists, there’s even dieticians and speech pathologists and I think that covers everybody. We have nursing as well, but they don’t usually fall under the branch of allied health, that’s a bit more medical. But still, all part of the package, and all part of the things that Helping Hand offers.

00:01:22 Kate
And they’re all sourced through Helping Hand as well aren’t they?

00:01:23 Amanda
Yes. So we have all of those disciplines working for Helping Hand in home care, and I know that we also work across the residential sites as well with those disciplines.

00:01:32 Kate
So people are getting to see people that are part of Helping Hand team which must be very reassuring as they come to their homes.

00:01:38 Amanda
Yes, it’s really nice that we can have people that are from Helping Hand, to understand policies and procedures bigger than Helping Hand as well, so up to the more government levels. And make sure that when we make, when we get a referral, that we know who the coordinator is of the person, we know that little bit more about them. And we might get to see them a few times, so it’s bit about relationship building as well. More than just, you just pop in pop out, and then you go on. You can see people for several years.

00:02:00 Amanda
We just had a client this week who requested a specific occupational therapist that they’ve seen for about six or seven years now, said that ‘no I don’t want another team member, I want to see that person again’; so it just shows that relationship building is really important.

00:02:18 Kate
So how do people know that allied health is there, and that there are certain services that might help them reach their personal goals? As I said, allied health is not necessarily a description people know quite closely, so do you inform them that there are these things out there and what might align to their particular goals?

00:02:33 Amanda
So it comes back to the admission team, and so then the Home Care Package Coordinators or the Client Engagement Officers, or there’s a few other roles, but the ones who service the Commonwealth Home Support Package clients. And so they will talk through what the client’s needs are, and then they might be able to say ‘oh yes that sounds like something that an OT can help with’ or ‘that might be more physio or speech pathology’, whichever discipline that it relates to. And then it also comes back to when the client has had that very first assessment from the government assessors, they might put in referrals to say ‘you need an occupational therapist’. So it’s quite broad, but we don’t see someone without a referral. So they need to kind of already know what we are before we see them, which can be a bit tricky.

00:03:20 Kate
Yeah I was going to say, in my mind, you might see a physio because you want to be able to walk your dog, or maybe a exercise physiologist might help you get better at watering the garden – but an OT, not everybody knows what that is. So maybe you could tell us how you became an OT and what an OT actually does.

00:03:34 Amanda
So I became an OT when I was looking to change from my nursing background. I was just wanting something that wasn’t quite the same shift work, still wanted to help people, and one day I woke up and thought ‘hmm, OT, I could do that, I’ve got a rough idea of what they do’, and then a few months later I was at uni studying my four year degree to become an OT! So it just sort of progressed quite quickly there, I didn’t have much time to change my mind I guess. I’ve always thought it was the best choice that I’ve made, I’m really happy that I’ve become an OT.

00:04:02 Kate
How long have you been doing that for now?

00:04:03 Amanda
So I’ve been with Helping Hand now for a bit over three years, and then maybe four or five years before that, and then including my nursing and I was also a carer in residential care beforehand – I’ve been in for around 20-odd years now, so seen all sorts of bits and pieces over the years. And all of those roles have really complemented each other, to be able to look at the bigger picture and get to know people.

00:04:24 Kate
So what are some of the reasons that people would typically seek out help from an OT?

00:04:27 Amanda
One thing that I always try to explain to people is the word occupation in occupational therapy is what occupies your time during the day. So it’s not a workplace thing, ’cause sometimes people will say to me ‘oh I’m retired I don’t need an occupational therapist’, or sometimes people will answer the phone during our visit and they’ll say ‘I’ve got the occupational health and safety girl here with me’. It’s like – no it’s not quite like that! It’s what occupies your time during the day – so everything from getting out of bed, getting dressed, walking the dog, making something to eat – anything that occupies your time. Hobbies, sewing, doing a puzzle, socialising with family, getting out and about – it really covers so much.

00:05:11 Kate
So you are assisting them to be able to live a meaningful life doing those things that they want to keep doing.

00:05:15 Amanda
Absolutely. So that’s why we really need to, when we meet somebody, work out what their needs are. So part of what an occupational therapist does is we look at the person, we look at the occupation that they want to do, and then we also need to look at the environment that they’re doing it in. So if you have become less mobile and you can’t walk up and down stairs as easily now, but you live in a home that has several steps – what can we do to help make that safer, so you can achieve living at home for as long as possible and still doing the things that you enjoy.

00:05:52 Amanda
Sometimes people say ‘I don’t want to grab rail that means I’m giving up’, it’s like – no, it’s something that’s helping keep you safe. And if this rail stops you having a fall, and possibly having a significant injury such as fracturing your hip, or anything else – or then sometimes you might be then fearful of having a fall, and start withdrawing from doing the things that you enjoy doing – that rail isn’t really taking away from your independence is actually probably increasing your independence. So sometimes just reframing, or helping people just really look at how they see some of these assistive technologies, is a big part of what we do.

00:06:25 Kate
I know it sounds like a small thing, but I’ll never forget in England, it was a very long time ago, I met a lady over there – and they package everything in England, like to the hilt, with plastic. And she could barely open anything, and even jars and things like that were really frustrating for her. Do you help with little things like that which sounds small but are actually pretty big?

00:06:40 Amanda
Yes. So like I said, we cover anything that occupies your day. So we’ve got small kitchen aids that can even be as simple as, you know, the little like ring pulls on a tin of tuna, or like dog food cans, things like that. It’s really hard to actually open those if you have something like arthritis, or anything that’s limiting the function in your hands. And so, we’ve got devices where people are able to open those cans again. And so we have people that’ll be like ‘oh I’m able to feed my dog still, or my cat still’. And yes they could have someone come in and help feed the cat, but it’s just nice to be able to not have to ask for someone to open that jar, or open that bottle for them. It just gives them the extra little bit of independence.

00:07:16 Kate
Absolutely, that’s important. So if someone’s coming to see you for the very first time, what are the sort of things you would run through with them as they get started?

00:07:25 Amanda
So we always just start with a bit of an initial assessment and it’s really just to get to know the person – what their home environment’s like, the sort of things that they do during the day, ’cause sometimes people will say ‘oh I don’t know what I need to tell me, what you can do for me’. It’s like, well, I need to know more about you so I can make those suggestions. And I always explain to people that anything I suggest is a recommendation – it’s not that you have to do it, it’s just these are some ideas based on my clinical judgement. But you’re the expert in yourself and your body, and you might have tried some of these things before, or I’m not going to tell you have to change everything in your life. I had several people tell me that before I came, they knew that OTs often tell people to remove rugs ’cause they’re tripping hazards, and so they went and hid all their rugs before I turned up. And I’m like ‘oh thank you for sharing that with me, but even if I recommended you remove them, it’s still your choice, you just need to understand there’s a risk in having rugs.’ And quite often if a rug is large and heavy and not sliding around when you step on it, the edges aren’t curling up, it’s not really an unsafe thing, it’s just something that you want in the house.

00:08:30 Kate
So I mentioned, none of us really want to admit that we’re not capable of things. Do you have to sometimes tease out of people their needs?

00:08:38 Amanda
Yes, so quite often during that first visit, it’s a bit of relationship building and rapport building as well so I’ll have some people who, when we first talked with them, ‘oh no no, I’m fine with that. I’m fine with that. No worries there.’ And then after you talk a little bit more, they’ll happen to just mention something and you’ll be like ‘oh, are you sure that that you’re alright with that?’ If there’s something I can help you with, and then maybe just explain some of the interventions we might put in place. For example, the little steps over the tracking of the door to get in and out the house. That might be a trip hazard. Your walker might have got caught on there, or just might have stumbled cause it was a bit dark and you didn’t see it. And so I can talk about maybe a little small ramp to go there could just make life a little bit easier and without that relationship building and having those conversations. People just be like, I don’t know. I’m fine with everything. You don’t need to be here, which is sometimes what people say as well.

00:09:32 Kate
Are there common questions that people seem to ask about accessing both OT but allied health in general?

00:09:39 Amanda
I don’t know if there’s really any common questions. It’s more just understanding what we do and sometimes just clarifying that like, ‘oh, my friend got told this a few years ago from an OT. Is that true?’ And it’s like, well, that might have suited them. But legislation’s changed now or that’s not really quite what an OT would do, or maybe that suited their individual situation, but it’s not what you need.

00:10:03 Kate
It needs to be personalised doesn’t it.

00:10:05 Amanda
That’s right, it’s very personalised. If it wasn’t a personalised thing, anyone could do this and just throw 3 or 4 pieces of common equipment at you and be like ‘OK, see you, bye.’ And that’s, you know, not everyone needs those pieces of equipment, so let’s, you know, step back and work out what you need to support you.

00:10:18 Kate
People want to know how this can be funded. Have you got some information about that for us?

00:10:23 Amanda
So allied health services can be funded through someone’s Home Care Package, or through the Commonwealth Home Support Programme. Just with the Commonwealth Home Support Programme. They will need to have the My Aged Care codes in place. And if they don’t have them, they can just ask for them. Usually there’s just a bit of a phone call to My Aged Care.

00:10:39 Kate
So if someone was listening to this today and they wanted to, you want them to know one piece of advice about accessing allied health services or understanding what OT is and how they might utilise it. What would that piece of information be?

00:10:52 Amanda
So if they already with Helping Hand, I’d recommend that they have a chat with their coordinator or whoever a contact person is a helping hand, or even just to call Helping Hand and say ‘I’m having these problems. Is there somebody that can help me?’ Because the people who work at Helping Hand will be able to say, ‘Oh yes, that sounds like it might be an occupational therapist or that might be a speech pathologist, or maybe that’s a physio’ and direct them to the right referrals rather than just being stuck at, ‘I don’t know where to ask’ because sometimes just knowing who to ask the questions to is the biggest barrier, because we all have questions in ourselves, but not everybody knows the answers to the questions we have, so just being able to ask that right person. So I think that would be my advice.

00:11:33 Kate
And we will make sure that we have links to phone numbers and websites and all of those bits and pieces in the show notes for this episode, and I really appreciate you coming on and sharing your expertise.

00:11:42 Amanda
Thank you so much for having me.

00:11:43 Kate
For more information on Helping Hand and their services please head to www.helpinghand.org.au. You can also call their home care number 1300 444 663.

00:12:04 Kate
Please remember you understand your needs better than anyone. Take the time to contact one of our friendly team to find out how we can help.

00:00:00 Kate
Welcome to Age Old Problems: New Aged Care, a podcast by Helping Hand that offers information and advice to help you find and access the right aged care services. This podcast was recorded on Kaurna land.

00:00:23 Kate
Hello I’m your host, Kate Holland. And I’m so glad you’re listening to this episode of Age Old Problems: New Aged Care, as it’s a really important one about advanced care planning. So this means planning for the future care of you or your loved one in line with personal wishes and desires. Not always an easy thing to bring up, this kind of planning is a very valuable thing to discuss with family. Joining me to discuss this topic is Zara Freeman, who’s a Palliative Care Nurse with Helping Hand, and it’s a subject that she’s very passionate about. Welcome Zara.

00:00:50 Zara
Thank you so much.

00:00:51 Kate
So firstly, for people that have no idea – and I myself knew what an advance care directive was, but didn’t know there was a umbrella term, advanced care planning – can you explain what that is?

00:01:00 Zara
So basically advanced care planning is just sharing about a person’s healthcare and how they would like to live their life. So how they’d like to live their life now, and into the future. So it’s about looking at if their health deteriorates, what type of care that they would like, where they would like to live, and what things are important to them. It’s a really important process and it’s also a fun and exciting process and gives people a lot of agency for their health.

00:01:30 Kate
So what’s your role in supporting residents and their families in this process of advanced care planning?

00:01:35 Zara
My role is that when a resident enters our residential care home, we like to get together with the family and the resident in the early stages of their admission and just to have a comfortable, friendly chat with them about what their care needs are and what they would like into the future. And this can either be the starting of discussions around completing advance care directive. Or for those residents that have a cognition deficit, we also complete another form which is called my life decisions, which is the same as an advance care directive, but it’s for residents that need supported decision making.

00:02:16 Kate
So what is an advance care directive? I don’t think everyone knows what that is.

00:02:19 Zara
Yeah, sure. So an advance care directive is a legal form. It’s actually for people over the age of 18. Anyone can have an advance care directive, so if you haven’t got one and you’re over the age of 18 would be really good for you to start one. And basically what it is, it just records your wishes and your values and also your present and future healthcare. So it’s what would you like now and what would you like into the future if something should happen to you.

00:02:47 Kate
Now I remember this coming up with my father in law and we thought we should have this discussion and everybody got very strange about it. But actually when we started the discussion, it was quite a healthy thing because as you say, particularly as you age – although life is unpredictable and, you know, I’m not quite aged care yet, but I do have one myself – it is about making decisions around what might happen if you can’t make decisions for yourself, if your health deteriorates significantly, that sort of thing, doesn’t it? And it can include things like if you were going to make funeral planning, the sort of elements that you might want to include in that.

00:03:18 Zara
Exactly, exactly the form is a fantastic form, it’s really easy to fill out. You can basically download it online through SA Health. But the important thing to acknowledge is that even though it is an easy form to fill out, it can be confronting for some people to talk about their life, thinking about their life and what things they would like in the future. And sometimes people may not be speaking about it to other family members as well. So you may think that, you know you want to speak to your dad about it or any loved one about it, but they might not want to talk to you about it. So it could also be that you have a chat about it with your friend as well. You don’t have to be the substitute decision maker to have these discussions. It can be an initial discussion with just a family or just a loved one and you could talk about it down the beach or at the park. It can just be a relaxed conversation. It doesn’t need to be scary or intense.

00:04:15 Kate
So you mentioned a substitute decision maker. What is that?

00:04:18 Zara
Yeah, so substitute decision maker is the person who we’re doing the advance care directive form, who they would like to be their decision maker. So it’s their legal decision maker. So in the event that the person that has the advance care directive, that they may become unwell, may not be able to make their own decisions, they can appoint the substitute decision maker to make decisions on their behalf. So either you can have one substitute decision maker, you could have two or three or four. But it’s really important to have someone that you trust and that you’re looking through their eyes and stepping into the shoes of the person the advance care directive is for, and that’s the most important thing – that you’re acknowledging their wishes and you’re following through and honouring that.

00:05:06 Kate
So you mentioned that the person you discuss a directive with doesn’t necessarily have to be the substitute decision maker, but would it make more sense if you did do it with them, because they’re gonna be the ones making those decisions on your behalf?

00:05:16 Zara
Exactly. So sometimes with the advance care directive, you might wanna have lots of different discussions with lots of different people, so maybe that you may start initial discussions with your friends and people that you love. And then when you have an idea about what you want, then you may make it more formalised and then start discussing with your substitute decision maker. I think the really interesting thing that I found in my job is that some family members think that they are definitely going to be the substitute decision makers because they’re the people that have been most involved in their mum and dad’s care, and sometimes they’re actually not, so that can be a really interesting family dynamic issue that we need to work through. But it’s an amazing, wonderful process, because not only do the substitute decision makers learn things about their mum and dad, that they’ve never ever known before, which is so beautiful, but it also gives them such an honest space that they can really value and work through what their mum or dad would want and just honour their wishes. And it’s a really beautiful thing to do and it’s quite humbling as well for the whole family.

00:06:26 Kate
So what are the sort of wishes that come into this? Obviously there’s things like if your health deteriorates. But as I mentioned with my own, it might be things like having music playing at your funeral. Is it that spectrum of things?

00:06:36 Zara
The form start off with ‘What are your values and your wishes’ so that can be anything like: I’d like to get my hair done every week, or I’d like to have makeup on, or make sure I wear high heels, or it can be anything that is important to that person. It could be that I want my dog with me all the time. So you’ve got all those beautiful soft things that make us to be human, so that’s the first thing. And through all those values and wishes what your main focus is that you’re looking at is quality of life and what makes up someone’s quality of life. So for me I could say if I was in a wheelchair I wouldn’t want any treatment. But you Kate may say, oh if I’m in a wheelchair, that’s fine. I can still continue my life. So it’s really, really important to look at what people’s quality of life is and what that means to them. So really delving in to that does take time, and it can take hours and hours to work out what people’s quality of life means to them, because we never think about these things.

00:07:36 Zara
From there – which is such an honour and a beautiful conversation to have – but then we then delve into, once the resident and once the person and the community starts feeling comfortable, then we can go into things that may be a little bit challenging, talking about what healthcare they would like. That could be things like if they were in a car accident, would they want to be in intensive care? Would they want resuscitation if they deteriorate, what type of healthcare they would like? So at Helping Hand what we do is we talk about how they are presenting when they arrive on admission. And we go through the whole journey of their life with us, which is such an honour all the way up until past their death, into the memorial service we have, so that when residents in our facility start the pathway of their new life with us, they understand exactly the healthcare they want, the healthcare they don’t want. And then of course, that gives them agency to understand the quality of life they want and then the quality of life and care we’re giving them.

00:08:42 Kate
You mentioned that you have to sometimes work with a family dynamic when the decision maker isn’t necessarily the person that they imagined it to be. Is this why a plan like this is so important? Because when you do reach a point here, for lack of a better word, the decision is there by the individual, and the family are not left maybe in conflict about that.

00:09:00 Zara
Yes, exactly. And it’s really, really important for the family to be all on the same page because you may have a brother or sister who may have never spoken for ten years, or have different ideas about what’s good for their mum or dad. It’s a wonderful time for the family to either be connected or share an understanding that they’re there for their mum and dad and it’s about their mum and dad. It’s not about them and that they are just valuing exactly what their mum or dad want and it gives them peace of mind. And of course it gives the resident or anyone out in the community peace of mind that people are gonna follow their wishes.

00:09:40 Kate
So this is a legal document, an advance care directive. Does this mean people have to then go and get it signed off by a lawyer?

00:09:45 Zara
So what we do here at Helping Hand, and what you can do out in the community as well, is all you need is a Justice of the Peace to sign. So we have our own Justice of the Peace here. And she will come in and sign it with the resident and the family, the substitute decision makers. And if you’re out in the community, you definitely just need to go to a Justice of the Peace and get that signed. I think the most important thing – because we do receive quite a few advance care directives that people have done out in the community – I think it’s really important that you write as much as you can in the advance care directive, even if you do extra pages.

00:10:22 Kate
It’s a downloadable document, isn’t it?

00:10:23 Zara
It’s a downloadable document, yes, and you just type in the browser advance care directive and it’ll come up. All you need to do is print it off. And I would always suggest go to somewhere beautiful that you love, like a park and just sit and relax, have a nice picnic, but just enjoy yourself and just get it started. Just start talking about it. You don’t need to do it all in one hit. I think people think it’s a form. It needs to be filled out. It’s a question and answer. It’s certainly not. It’s about your whole life and what’s important.

00:10:54 Kate
It’s about living the best life you can, right throughout your life.

00:10:58 Zara
Exactly. Living your best life. Living the life you want. Some things you’ll say. Yes, I OK. I will do that, or I won’t do that. But it really gives you that knowledge and that power to live how you wanna live, not how other people want you to live.

00:11:15 Kate
That’s beautiful. Now we often end the episode with, like, one piece of advice that you’d like people to take away with them. I think you’ve probably just given it. Don’t be scared of the process. Sure. And find a nice place to do it, would that be right?

00:11:24 Zara
Yeah, I would say don’t be afraid to do it. And you have to be over 18 years old. But I think if we all can just do it, get it done and then not only is it valuable that you have a document at the end, but you have created a beautiful relationship with a person you’ve done it with.

00:11:41 Kate
That’s great. Well, I think you would be a wonderful person to talk to about this stuff. So thank you so much for explaining that to us today.

00:11:45 Zara
No worries. Thanks a lot, Kate.

00:11:54 Kate
For more information on Helping Hand and their services please head to www.helpinghand.org.au or call Helping Hand directly on 1300 653 600.

00:12:10 Kate
Please remember – you understand your needs better than anyone. Take the time to contact one of our friendly team to find out how we can help.

00:00:00 Kate
Welcome to Age Old Problems: New Aged Care, a podcast by Helping Hand that offers information and advice to help you find and access the right aged care services. This podcast was recorded on Kaurna land.

00:00:22 Kate
Hello I’m your host, Kate Holland. Did you know that at home nursing services are available via Home Care Packages? This means you can skip a trip to the GP and have plenty of services delivered at home instead. In this episode of Age Old Problems: New Aged Care, I’m joined by Jess Bryant, Clinical Manager with Helping Hand who is highly knowledgeable on what’s available to whom and how to access it. Welcome Jess.

00:00:43 Jess
Hi.

00:00:44 Kate
So Jess tell me about your role at Helping Hand. What does that involve?

00:00:46 Jess
I’m the Clinical Manager for Home Care Services, and that involves looking after all the nursing services for home care clients.

00:00:51 Kate
So those nursing services include at home nursing services as well, don’t they?

00:00:58 Jess
Yes.

00:00:59 Kate
Are you able to tell me a little bit about the areas in which Helping Hand offers at home nursing services?

00:01:04 Jess
So our nurses come out to your home, and they can assist you with things like wound care, medication assistance, whether that just be from prompting to actual administration, insulin administration and diabetes management, continence assessments, assessments to help get dementia supplements through their packages, we do skin checks, general wellbeing – which can involve your blood pressure monitoring, pulse, and all those types of things that you would normally go to the doctor for – we can do them at home to prevent you having to go that extra trip to the doctor.

00:01:34 Kate
They sound like excellent services. So who is eligible to receive these services?

00:01:40 Jess
So any client that’s on a Home Care Package with Helping Hand, any Commonwealth Home Support Programme participants, and the general public can pay a fee for service as well.

00:01:50 Kate
So do you find that many people are aware that at home nursing services are available to them?

00:01:56 Jess
No, I don’t believe many of our clients are either. Our Home Care Coordinators will actually liaise with us to refer them through to nursing services.

00:02:05 Kate
The services that are given to people, do they then liaise with their GP as well? Is there kind of a crossover between the two?

00:02:07 Jess
Yep. So if it’s anything like wound care, medication management, the nursing team can also assist with that. We can come out to the doctor with the clients, or we can just phone them or email them to let them know what we require to help their clients stay in their home longer.

00:02:23 Kate
And unlike some other organisations, the nursing staff that work with clients at Helping Hand, they are all Helping Hand staff themselves, aren’t they?

00:02:30 Jess
Yes, we have a team of nurses across metro, Whyalla, Port Pirie and Clare, and they’re all Helping Hand employees.

00:02:37 Kate
Obviously people will still have their own GP. Are the services that are provided through the nurses, is that information then coordinated and sent through to their GP?

00:02:44 Jess
Yes. So we will email through to GPs, call GPs, or sometimes go with clients to their GP. This is so that we can have that continuity of care for our clients.

00:02:54 Kate
So when you have a first appointment with a client, what would you generally run through with them when they’re going to start accessing these services?

00:02:59 Jess
So we would go in and we would do an initial assessment, depending on the service type, you know could be a medication assessment, or a skin assessment if it’s a wound, and, you know, many other types of assessments that we have. We introduce ourselves, we go through what they would like out of their care, what their goals are, and then we work with them to achieve those goals.

00:03:17 Kate
Will they have a continuity of nursing staff coming to them? Do they have someone allocated to them or does that change?

00:03:23 Jess
Yep, in metro we have a small team of nurses that you will generally get, either one or two or three of the same nurses. Obviously that can change when staff have leave, but you will see the same faces and hear the same names when we’re coming out to see you.

00:03:36 Kate
Yeah, which would make people feel very comfortable, I’m sure. What are some of the other benefits of having Helping Hand come to you and having it at home as opposed to having to go out to a GP?

00:03:45 Jess
You don’t have to run around and make times to get appointments, or lifts if you’re not able to drive. We come out to see you and we can talk with the GP so that we still get that continuity of care. If we think you need to see the GP, we do refer you in to the GP as well. So it’s just easier.

00:04:05 Kate
So I’m sure you have lots of good examples of things that you’ve offered, but do you have a particular story that stands out where you’ve helped a family in a way that perhaps they would not have expected that they could have improved through at home nursing?

00:04:13 Jess
Yeah. So we see a lot of carer stress as nurses when we’re going in, whether it be husbands or children of, you know, their mother – looking after them, helping them with simple tasks, just feeling like it’s too much for them. So we had a particular lady who her daughter was looking after her. A lot of carer stress happening. We discussed with the daughter around, you know, what is it that’s causing you this stress and how can we help? And we found out that it was just the medication that she was having a lot of issue with about making sure it was correct, making sure it was the right time, making sure she was there for her mum. So we offered nursing support. We did a medication assessment. We spoke with the GP, got the list of medications and set that up to do twice daily medication so the daughter could actually just go in and be a daughter and not have to go in and worry about medications and managing this for mum as well.

00:05:01 Kate
So it’s not always actually medical help on the person, it’s also providing support. I’m guessing that maybe some people don’t know that nurses actually have this broader skill set, and sort of permission to do what they can do, would that be right?

00:05:13 Jess
Yeah. So the GP’s will tell us exactly what they’re needing for their client once we set a goal plan up, and then we just work with them and we feedback to them if there’s anything that’s outside of the norm for the client.

00:05:24 Kate
So what changes are on the way for nursing? I get the impression that some things are changing. Where do you see it heading in the future, particularly nursing at home?

00:05:34 Jess
So nursing with the new Support At Home that’s coming through will be growing. There’s a big clinical aspect on there, where Helping Hand are currently looking at getting AINs, which Assistant in Nursing, so it will be an upskilled worker that can do basic nursing skills, to be able to streamline the process and minimise wait times. We’re also looking at getting more involved in the palliative care area because there is grants that are coming through for Support At Home, and that will be helping to keep people in their homes longer, which is what the community is telling us that they need.

00:06:09 Kate
And Support At Home, that’s a government initiative?

00:06:11 Jess
Yes.

00:06:12 Kate
And the information of that is continuing to roll out.

00:06:13 Jess
Yes.

00:06:14 Kate
So would you suggest for people to find out more about that, or just to keep on top of it, to visit both the Helping Hand website and perhaps the government websites?

00:06:22 Jess
Definitely. We’re getting new news every day.

00:06:24 Kate
we’ll make sure we have links to that as well. And obviously if people would prefer to talk to somebody, they can call Helping Hand and get information from a person?

00:06:29 Jess
Yep.

00:06:31 Kate
For somebody who is thinking about getting at home nursing, what would be a piece of advice that you would give them? What would be their starting point, and what would be the key reason you’d suggest they might pick it up?

00:06:40 Jess
If you’ve got any concerns around your health, if you are wanting to promote your health and stay at home longer, we can come out and just assist you in those things that you might normally go to the doctor for, or that you know families can sometimes say that you know you shouldn’t be at home anymore. But we can actually help stabilise things and keep you at home for that little bit longer than what the normal trajectory might have been.

00:07:02 Kate
So obviously, if somebody has an issue arise, they would call their GP and try and make an appointment. Is it the same sort of thing? If they have something that suddenly appears and they need help, can they then contact their at home nursing staff to come and attend to them?

00:07:11 Jess
Yep. So anyone with a Home Care Package can contact their coordinator, request to have nursing in place. The coordinator will then send a referral through and we will call to contact you, make an appointment, set that up. If we have a Commonwealth Home Support Programme client, they can get the codes from My Aged Care and then they can contact Helping Hand and we can set them up for a visit as soon as possible as well.
00:07:38 Kate
Sounds incredibly beneficial and I think I would like home nursing to come to my house so I didn’t have to try and get in the queue for an appointment too! Thank you so much for talking to us about it.

00:07:50 Jess
Thank you.

00:07:51 Kate
For more information on Helping Hand and their services please head to www.helpinghand.org.au or call Helping Hand directly on 1300 653 600./s

00:00:00 Kate
Welcome to Age Old Problems: New Aged Care, a podcast by Helping Hand that offers information and advice to help you find and access the right aged care services. This podcast was recorded on Kaurna land.

00:00:23 Kate
Hello and thank you for listening to Age Old Problems: New Aged Care. I’m your host, Kate Holland. Now in response to the Royal Commission into Aged Care Quality and Safety, the government is introducing some changes with the aim of helping older Australians live independently at home for as long as possible. One of those is a new home care program called Support at Home, which will eventually replace Home Care Packages.

00:00:43 Kate
This change was expected to come in from the 1st of July this year, but the changeover has been pushed back until the 1st of November. Support at Home will eventually replace the Commonwealth Home Support Programme too, but no earlier than July 2027. Now we all know that with change comes many questions and Helping Hand has received many from those with existing home care packages. Someone who holds plenty of answers is the wonderful Mel Bassham. She is Aged Care Connector for Helping Hand and she joins me now to explain a few things before any changes take place. Welcome Mel.

00:01:13 Mel
Hello. Thank you.

00:01:14 Kate
Now let’s start with your role as Aged Care Connector. What exactly does that mean?

00:01:18 Mel
Many things. I can help people to register with My Aged Care and help them through the process to get access to supports at home. That could include anything from domestic assistance to social support to allied health therapies, it depends on what their need is. Do they have someone in their life that can support them but they’re feeling a bit overwhelmed as well and they need a bit of a nudge in the right direction? It can be a one on one support face to face, helping them through the assessment as well. So depending on what the person needs I can help them to get access to what they require.

00:01:53 Kate
And how do they reach out and make connection with you?

00:01:55 Mel
So they can call our 1300 number or there is an email connect@helpinghand.org.au?

00:02:01 Kate
Is that a free service through Helping Hand?

00:02:04 Mel
Yes, currently it is. Yes.

00:02:06 Kate
Now that the introduction of the new Aged Care Act is on hold, which also has an impact on Support at Home, we understand there’s still more information to come, but can you explain to the listeners exactly what Support at Home is and why it was going to be introduced?

00:02:18 Mel
It was introduced that Support at Home should be a fairer, user-friendly system to better meet the needs for older people. I do see how they have changed the way that it is structured, so it’s about the clinical need, your independence need, and then your everyday living. And then obviously the contribution towards that has changed as well. So in that regard, it is making that fairer, and I do think that they’re also looking at reducing the wait times to have access to those supports, as well as any goods and equipment or modifications to their home. Currently at the moment, you would need to accumulate your funds through the package, whereas with this new scheme there will be access to funding immediately. And also previously if you were waiting for a Home Care Level 4 for instance, which is the highest level at present, you could opt in to have a lower level. So a Level 2 and then you’d wait another time to get that extra funding. From what I understand, you will be allocated a higher level according to your needs and you will be able to access 60% of that funding after a small period of time, I think the aim is for three months that you would wait, which is significantly less where we’re looking at 12 to 18 months at present. When I first started in this role in another organisation six years ago, the wait time was blown out to two years. So it has come down. It’s just, for my liking, it’s not soon enough to access, and people are wanting help and don’t know what to do.

00:03:50 Kate
So when Support at Home comes in what will this mean for current and existing home care package holders?

00:03:59 Mel
So it depends on when their approvals are for their package that they have at the moment. And it all depends on one date which is the 12th of September. If you were approved and accessing, or on a wait list, prior to the 12th of September, you will transition, or in other terms grandfather, to Support at Home.

00:04:19 Kate
I see. So that’s for people who were approved prior to September 12th 2024.

00:04:24 Mel
After that date. So if you’re on the 13th of September and have an assessment and got approval, you will move in directly as being a new Support at Home customer.

00:04:32 Kate
OK, so there’s a lot of information for people to try and get their heads around. I believe with this in mind, Helping Hand has set up a dedicated hotline to answer these questions?

00:04:39 Mel
Sure, yes, they have that number is 1300 050 435. We have deep dived into the world of Support at Home and we kind of know the ins and outs of how it works and if we don’t know, we will look into it further and get back to that person if needed.

00:04:56 Kate
We’ll put that number in the show notes so people can go to it. Has it been busy?

00:04:59 Mel
There’s been times, yes, definitely. When Helping Hand has provided some information or when the government has sent out letters, we do get some concerns and worries, and by the end of the call, those people have been reassured and they understand that a bit more, so don’t be worried. Have a conversation before you start worrying. More often than not, it’s a better outcome of what they are actually seeing at the moment. There are some people that are better off, some people have had no change whatsoever. It’s just business as usual.

00:05:29 Kate
Are there any repeated questions that seem to be coming up, I think co-contributions was one of the ones?

00:05:30 Mel
Definitely. Co-contributions and rolling over of built up funds. They’ve been for a period where they’ve had to save everything, the new model will show that you’ll be able to reassess to get access to funding, to purchase goods and equipment and or have home modifications. At the moment it’s Home Care Packages Level 1 to 4; new world: Support at Home it is a classification of between 1 and 8, so there’s more higher levels of funding. So I think at present it’s close to around $60,000; new world: the highest level of packages is around $80,000. That’s kind of how I see it. The take away point is, don’t panic. There will be support to access the goods and equipment. You will be able to roll over funds in the Support at Home. It’s just not going to be as a higher level as what it was before because the government would like you to use your services, use that classification to ensure that you’re getting those services at home, whereas at this point, at the moment, is some people don’t use it for services and they go without certain things to save for equipment and that worries me because that can be a bad implication, that someone’s not having a personal care because they need to get a wheelchair. Well, we want someone in that home to support that person.

00:06:50 Kate
Now when it comes to crunching these numbers, I do think there’s a new tool that has just been released that might help people.

00:06:55 Mel
That is for the co-contribution. So it’s a fee estimator that the government, because they’re aligning that with the three areas of care: the clinical, the independence, and the everyday living – so that’s separate to the budget. The budget you would go through with your coordinator or in the new world, it’s called a care partner. So that’s another change that’s been implemented.

00:07:17 Kate
OK. So that co-contribution question that comes up, that calculator will help people to get their heads around that? And is that available online now?

00:07:23 Mel
Yes, that definitely is on the My Aged Care website. And then also you can have a conversation with Services Australia.

00:07:30 Kate
So if you were going to give a key piece of advice to someone in the process of transitioning from a Home Care Package to Support at Home, what would that advice be keeping in mind? And everybody needs to know that the changeover is no longer July 1st. It’s going to be the first November. So there’s a bit more time to play with which is good. But should they be getting prepared as soon as possible anyway?

00:07:49 Mel
Definitely. My key takeaway advice is to firstly work out what kind of support that you really require, and looking at the areas of clinical, that would range from any allied health therapies to nursing. Anything to help you be independent and keeping mobile, whether it be an exercise class or a balance class. Then looking at your independence, so the social support – you’re going to the shops, transport. And then everyday living is your gardening and domestic assistance, etcetera. Making sure that part of your assessment to get that, like so reaching out to My Aged Care for that assessment, and making sure that you share what you are wanting to access. What’s your goal, how do you want that to work for you? I don’t think you should discount the help that you might need.

00:08:42 Mel
Personally, from my experience, I’ve had grandparents that moved into residential aged care far too early, and knowing what I know now, if they’d had some more support at home, that would definitely have changed that outcome. So you know, it’s the case of what I know now, I wish I knew back then. So I think that’s what drove me to do what I do to today. I have had customers that I’ve helped before through an assessment process and it can be tricky, because the language isn’t what you would normally use. So I’ve been an interpreter at times. I had a gentleman that I assisted who was having some issues with his back and there’d be times where he would be laid in bed every day. The question was ‘how do you go about getting meals?’ And he actually said, ‘yep, I’m fine. I can cook and do all that.’ But I knew that there was times where he wouldn’t actually cook for himself. And so I just kind of steered the question of ‘what do you do on your bad day?’ ‘What happens when you’re bad?’ And he said, ‘well, I make a cup of tea, a piece of toast.’ And that’s not sustainable for a week in bed. So that changed the conversation to, ‘would you like to have some meals delivered or would you like to have someone to help you to prepare some meals at home?’ So very different outcome from that very first conversation of ‘I’m OK. I can cook.’ Yeah, he absolutely could cook on a good day, but not when he was having a bad back day.

00:10:02 Kate
So putting aside all of their complicated information around funding, all the rest of it, if somebody’s goal for themselves or for a loved one is for them to live at home independently as long as possible, would you recommend the best starting point is reaching out and talking to somebody like you, because obviously your talent and skillset is in drawing the important information out to help assist them live as best possible.

00:10:26 Mel
Definitely talk to family, talk to My Aged Care, reach out to us, start the conversation. Don’t be afraid to think that you need some help at home. It doesn’t mean that you failed as an older person. It just means that you’re gonna have some more people in your life to help you to support you be at home, be upright, reduce falls, whatever it might be that you need to keep being at home.

00:10:48 Kate
That’s right. And that benefits not only them, but also their carers and their loved ones.

00:10:52 Mel
Absolutely, yeah.

00:10:53 Kate
Look, I think we must reassure people that throughout this transition, which is now ongoing and extended through to November, all the services that they’re currently receiving will continue as normal and they’ll get the same level of care and support, and I’m sure you and your team will make sure that people get updated information as soon as it comes to light at your end as well.

00:11:09 Mel
Definitely. You continue to call our hotline for the Support at Home if you wish. The organisation is also providing information and newsletters and updates by email too.

00:11:20 Kate
Well, it’s a very, very busy time. All the people out there are lucky to have you with your passion and desire to want to help them. So thanks so much for helping to uncover some of the mystery around this for us today.

00:11:29 Mel
No problem, thanks for having me.

00:11:34 Kate
For more information on Helping Hand and their services please head to www.helpinghand.org.au or call Helping Hand directly on 1300 653 600.

00:00:00 Kate
Welcome to Age Old Problems: New Aged Care, a podcast by Helping Hand that offers information and advice to help you find and access the right aged care services. This podcast was recorded on Kaurna land.

00:00:22 Kate
Hello and welcome to another episode of Age Old Problems: New Aged Care. I’m your host, Kate Holland. Did you know that it’s estimated that in Australia there are more than 433,000 people living with dementia? So with this knowledge at hand, we’ve decided to devote three episodes to understanding it better. And this one’s the first.

00:00:40 Kate
Dementia is not a normal part of getting older. Instead, it’s a broad term that describes a collection of symptoms caused by disorders affecting the brain. And while everyone’s experience is unique, there are some early warning signs that you can look out for. Joining me to help you understand all of this a bit better is Tanya McIver, who is Group Manager of Residential Services at Helping Hand. Welcome Tanya.

00:01:00 Tanya
Thank you Kate.

00:01:01 Kate
So can you start by telling me a little bit about your role at Helping Hand. What does that involve?

00:01:05 Tanya
My background is clinical and a registered nurse, and currently I oversee and support four of our residential aged care homes at Helping Hand. And that’s supporting them with their clinical care, operational care, family and staff care.

00:01:18 Kate
Great. So how does that tie into understanding dementia? Can you talk me through your background and your experience in working with people with dementia?

00:01:25 Tanya
Sure. I was at university and worked as a carer while I was doing my registered nurse training. I moved into acute for a while, but always had an absolute love and passion for delivering respectful, dignified care to our older Australians, so I’ve been back in aged care for over 20 years, managing homes, and am very passionate about supporting staff involvement to ensure that there’s respect and dignity at all times.

00:01:49 Kate
And you did mention to me before we started this, you were drawn to work in aged care and with other people, why was that?

00:01:54 Tanya
The older people have created this country that we live in, and people deserve care, and they deserve the absolute best care after all the work that they’ve done to create this beautiful place that we live in. Staff need to respect, understand, and then make sure that we’re giving them the best experience possible in aged care, which is their final home.

00:02:15 Kate
So dementia, which unfortunately does impact a lot of people. So it’s not just one disease. How can you define dementia and what are some of the diseases that are linked with it?

00:02:23 Tanya
So there are a lot of different variants of dementia. There’s some that are diagnosed as part of another condition, like a Parkinson’s can lead to a dementia. There’s different parts of the brain that can be impacted which develop like a frontal lobe dementia, which will give different signs and symptoms. So there’s lots of early signs that people will pick up at home across that variety of disease diagnoses.

00:02:46 Kate
So is that why it appears quite differently in different people because of the condition leading towards it?

00:02:51 Tanya
It does. Because of different areas of the brain that it can affect, because different parts of our brain control different parts of our emotion, personality and behaviours. So there are different ways that signs and symptoms can come, and also people are individuals. So it impacts individuals differently and sometimes because of their life experience and lived experience, it will impact someone differently.

00:03:13 Kate
The differences aside and what leads to it aside, what are some of the common early signs of dementia that people might be able to look out for?

00:03:20 Tanya
You see, there’s the forgetting things, but it’s not just where’s my car keys. It’s actually. I don’t know where my bathroom is. I’m at my front door and I haven’t just forgotten my keys. I’m not sure if I know where my car is, so there’s the small forgetful things. People can also become very repetitive, so you might start to see someone ask the same thing over and over again, and no matter how many times you give the answer, that person is not able to retain it. Real changes in routine, often people are awake a lot at night, so that can change. And there’s also the fear of security, so people might go out their front door and not be sure where they are, so that’s when safety becomes a concern. And changes in someone’s personality, you might start to look and go, well, that’s just not like mum. She doesn’t do that. So things that are really out of character. It’s sort of a myth that it’s just, I’ll just start to forget things – there’s some critical personality changes that might start to get you worried that something’s going on.

00:04:18 Kate
I have heard, actually through personal experience, that not being able to deal with basic numbers and things like that, is that another indicator?

00:04:23 Tanya
Definitely. Something that’s always been familiar to a person, and you just forget your sequencing, so things no longer make sense and, you know, I’ve looked after people who are, say, school teachers that no longer can process putting prose and language together. Mathematicians, doctors, that just lose those real basic things that have been part of their life, and that has been what makes them who they are.

00:04:50 Kate
Can you sense their frustration with that?

00:04:52 Tanya
The early signs of dementia, and living with dementia early in life, is incredibly frustrating. Because you have moments of absolute clarity where you think, ‘what on earth am I doing?’ and that’s confronting and embarrassing for some people, especially people that have had very high pride in what they do. It can become very embarrassing trying to understand why you’re doing what you’re doing.

00:05:15 Kate
It must be a bit frightening for them if they start to be suspicious that this is something that’s becoming a problem. And then for family members, if they start to detect some things like these, where’s the best place for them to turn for help or advice? If they’re suspicious that maybe some of this forgetting is a bit more significant than the rest of us losing our keys, which we all do?

00:05:33 Tanya
Yes, there’s some really good starting points. Often people find that if they’ve got a family GP, it’s a really good place to start, because if you’ve got that relationship, they will also support understanding. There’s organisations such as Dementia Support Australia, there’s dementia hotlines that you can call. There are really great external supports, and also your own friends and family. So it’s, you know, opening up and just saying, look, I think this is what’s happening and asking for help. But absolutely the first starting point is your GP.

00:06:05 Kate
Great. Well, we’ll make sure we put some links in the show notes for Dementia Australia, etcetera. So people know where to turn to. What about broaching the recognition of these signs with the loved one that you think might be behaving differently than you’ve seen before? How’s what’s the best way to broach that?

00:06:18 Tanya
Again, it’s very individual. Some people will be really open to it. A diagnosis of dementia is absolutely life changing. And if the person’s living with dementia, their ability to process that may be very varied, so it’s gauging where they’re at as far as coping, and at that point, sometimes the real care has to go to the caregivers themselves to support them with it. Because sometimes you have to explain over and over again, so it’s not just saying on one occasion you’ve got dementia. It may be a daily and hourly recurrence of that person having no insight into that diagnosis.

00:06:59 Kate
What about anger or frustration that you’re saying to somebody you think this might be the situation? Do some people push back and just not want to hear it?

00:07:05 Tanya
Absolutely, because it is confronting and it’s uncomfortable to think that you might have that. Plus in the early stages, you know, you do come in and out of understanding. So when you are able to process it, it’s really scary. When you’re not able to process it, you don’t understand why people are saying that to you. That’s when you could become quite upset and agitated about it, and that’s not fun.

00:07:27 Kate
You don’t want to see your loved one upset. But am I right in thinking that the earlier that you address this situation, the better?

00:07:34 Tanya
Yeah, absolutely. If possible, that is the best way to get the help. There are medications in very early stages and that’s why it’s important to get that medical support from a GP who may then refer on to a geriatrician who specialises, so there are people that specialise in looking after people with dementia. So the sooner you can get to it, the better. And it also allows you to start changing your environment at home to support. So if you start to understand and get help for the symptoms, you may be able to then change your environment to support their wellbeing even longer.

00:08:06 Kate
And those support lines you talked about before, do they also provide support and advice for the carer as they’re trying to deal with this?

00:08:11 Tanya
Yes, there’s incredible support for carers because it’s a 24 hour job when you start caring for someone. So places like Dementia Support Australia have incredible hotlines. They have a whole series of training and podcasts and courses that you can actually do, that will support you to understand what’s happening, and give you some tips and some help, and also keep showing you different places to go for that help, and also allows you to connect with the community that’s going through the same thing as you are.

00:08:41 Kate
Which is really, really helpful, isn’t it, when you can relate – because not everybody can understand if they’re not going through it themselves. So is it possible for people living with dementia to remain at home?

00:08:52 Tanya
Yes, for a period of time, it absolutely can be. And there there’s ways of supporting that to happen. It may be decluttering your home, it may be putting some signage up, using different colours, ensuring familiar items are around, getting some help, bringing people in to help you, some home care so that you can have a break yourself. Because home is such a familiar environment, so if someone can stay at home for a longer period of time, it’s just so important. So there are people that can come in and do that, so home care is a great way to bring carers in if that helps out, because there may be times where the person living with dementia is now struggling to even sequence a shower, so you bring someone in to do that and get support for the caregiver as well.

00:09:38 Kate
But the familiarity for them living at home, that’s very reassuring, isn’t.

00:09:42 Tanya
Oh it is. It’s all the familiar things. It’s where the memories are. It’s, you know, where the photos are. That may help them orientate themselves to time and place again. And all those familiar items that are really important.

00:09:54 Kate
Now I imagine the answer to this question is varied, because we’ve already talked about the fact that everyone experiences this differently. But how long can people with dementia, or people living with dementia, usually stay at home?

00:10:04 Tanya
Totally varied. It depends on what signs and symptoms become more prevalent, when safety becomes an issue, that’s usually the trick. The two real triggers to have to come into care are safety of the person living with dementia, or carer fatigue for the person caring for someone with dementia. When someone is at risk of leaving the home in the middle of the night and getting lost, it’s time to think about do we need a more secure environment? If someone’s unable to even get the just general personal care and they’re at risk of other things like infection or skin breakdown, it’s really time to think about coming into care. Home services are great, but ultimately we have to look after the people looking after people with dementia as well. And if it gets to the point, you know, sometimes we call it the breaking point or the crisis point. It’s important to know that there’s incredible services available that can pick your loved one up, like residential aged care, and bring them into a safe place to land.

00:11:05 Kate
Now we’re going to do a whole other episode about residential aged care and why that’s very beneficial for both the person who’s living with dementia and their family. But before we wrap this one, if someone was going to reflect on listening to this episode, what would be sort of key advice or key things you’d like them to remember? Maybe in terms of what they should really look out for, and how they should broach it with a loved one if they think that maybe there’s some signs happening?

00:11:29 Tanya
The most important thing to remember is you know your person the best. You are gonna pick up the signs sooner than anyone else, because of your relationship with your person. That is really hard to do, but there’s so many services to help and the sooner you can open up, discuss it, bring that help in the sooner you’ll actually feel you can get the support and wrap around that person and give them all the care and support that they need.

00:11:53 Kate
That’s great. That’s a really good insight and understanding and while we know that it is going to affect people differently, there are some really key things people can look out for there. So thank you so much for joining us, and we’ll speak to you again soon.

00:12:04 Tanya
Thanks, Kate.

00:12:11 Kate
For more information on Helping Hand and their services please head to www.helpinghand.org.au or call Helping Hand directly on 1300 653 600.