Helpline: Advocating for your loved one’s care needs

Caring for someone with dementia means you’re constantly learning—how to navigate healthcare, manage family dynamics and balance work with caregiving. You quickly become an expert in so many areas, often without realising it. 

But how do you share that wisdom with others? And what happens to all that knowledge once your loved one passes? 

Sharing your experiences with other carers can be incredibly valuable, not just for them but for you as well. It helps you to connect with others and can give you a renewed sense of purpose. 

If you’d like personalised advice on how to connect with other carers, you can contact the National Dementia Helpline on 1800 100 500. You can call 24 hours a day, or request a callback, start a webchat or send an email with whatever is on your mind. 

You can also listen to this episode of Hold the Moment to hear more stories of how other carers are sharing their knowledge. 

+++ 

Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios.  

Follow Dementia Australia on Facebook and Instagram or find support resources on our website. 

This episode was hosted by Jim Rogers and Kristin, a National Dementia Helpline Advisor. It was produced by Luci McAfee. Executive producers are Gia Moylan and Kellie Riordan. 

The National Dementia Helpline is funded by the Australian Government.   

Dementia Australia and Deadset Studios acknowledge the Traditional Owners of Country throughout Australia and recognise their continuing connection to lands, waters and communities. We pay our respect to their Elders past and present, and extend that respect to all Aboriginal and Torres Strait Islander peoples today. 

Dementia Australia acknowledges and appreciates the support of the Australian Government for this initiative. 

 

Episode Transcript

(00:06):
- When you are new to caring,you're constantly
learning and adapting.
Every new experience or resource
adds to your grown wealth of knowledge.
So why not share it with others?
Hi, I'm Jim Rogers,
and this is Hold The Moment.
A podcast by people living
with dementia and their families.

(00:28):
Reaching out to other carers to share your
experience and wisdom, is not only
helpful to them, but can also give you a
sense of connection and purpose.
Especially, if the loved one you
were caring for, has now passed away.
In this bonus episode, Kristen,
from the National Dementia Helpline,
gives you some great tips on sharing the

(00:50):
knowledge you've gained along the way.
As well as advocating for your
loved one's cultural needs.
[Music]
- One of the things thatyou might find as a carer,
is that you need to provide information
and advocate for your lovedone living with dementia so

(01:12):
that they are able to accessthe things that they need.
For example, you might find that you need
to explain certain culturalpractises, spiritual practises,
so that your loved oneliving with dementia is able
to continue with those.
You might also find thatif your loved one living
with dementia, has a historyof trauma, that you need

(01:35):
to explain what thatmeans for them, in terms
of other people helping with their care.
Always being the personto provide information and
education, can be exhausting.
So keep that in mind as yougo about your caring role.
[Music]
It seems obvious to saythat every person living

(01:57):
with dementia is different, but it's true.
And in your caring role,you will become a bit
of an expert in all theways that the person
that you love, does best.
As you find these thingsthat are helpful to care
for your loved one, you'llbe able to look at ways
to individualise things, andthis is really important.

(02:22):
What you might find is thatwhen someone gets anxious,
taking them outside wherethey can touch the grass
or see the birdsinstantly calms them down.
And that's great informationto share with others.
For other people, beingoutside is too much.
And finding a cosy spotinside with a blanket

(02:43):
and a cup of tea, isexactly what they need.
Because you're the person thatknows your loved one so well,
it can sometimes feeloverwhelming to take a break.
But think about all thethings that you know.
You can write those things down
and you can share them withsomeone else who can come
and do their very best to give as close

(03:05):
to the loving support that you give.
[Music]
One tip that you might findhelpful, if your loved one is in
respite or in residentialcare more permanently.
Is to write down some of the key things
and hang them up like posters.

(03:25):
So one of the things that youcould do is hang up a poster
that says, "I love dogs."
"Ask me about Shadow."
And that way, if someone thatdoesn't know your loved one
as well or is a new personin their life, it's a way
that they can find somethingmeaningful to connect
with your loved one right away.
Or another poster might say,"This is how you can say hello

(03:49):
to me in my language."
And that might be a reallycomfortable way for someone
to feel safe and heard and accepted.
[Music]
If it would be helpful to have a
resource that you could share with others,
Dementia Australia isa great place to look.
We have webinars on supportingpeople from culturally

(04:12):
and linguistically diverse backgrounds.
And also a webinar onsupporting someone living
with dementia who hasexperienced childhood trauma.
Some of the things that we mightbe able to connect you to,
are a support groupin a specific language that
might be accessible for you.
As well as social activity,

(04:33):
or day respite options for people
that speak different languages.
In addition, there's a wonderfulwebsite that I always like
to direct people to, and that's called
'Caring for Spirit.'
Caring for Spirit is a great resource.
If you're Aboriginal or TorresStrait Islander.
Check it out.
[Music]

(04:56):
[Music]
- If you've got any questions
about anything you'veheard on this episode.
Just contact theNational Dementia Helpline on
1800 100 500.
Their trained advisors areavailable 24 hours a day.
Every day of the year.
And don't forget to listen
to all of the episodes of thisHold the Moment podcast.

(05:19):
It's available on theDementia Australia website.
Or, any podcast app.
[Music]