Helpline: Tips on staying connected and managing relationships after a dementia diagnosis

Your close relationships enter new territory once you’ve been diagnosed with dementia. Roles change, people might pull away but, for the most part, your loved ones just want to know how to be there for you. This episode helps you navigate these changes.

If you’d like tailored support 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.

The Dementia Australia website has resources about maintaining relationships for people with dementia and for carers, family and friends. There is also information about navigating intimacy here.

If you want to hear more stories about caring, dating and making friends with dementia, listen to this episode of Hold the Moment.

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

Follow Dementia Australia on Facebook and Instagram and find support resources online.

This episode was hosted by Jim Rogers and Kristin, a National Dementia Helpline Advisor. It was produced by Luci McAfee. Executive producers are Grace Pashley 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 recognises 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

(00:05):
- After dementia diagnosis,
connecting with otherscan look pretty different.
Your relationship with your friends
or your loved ones can change,
sometimes into unexploredor exciting directions.
Some of my friends have done courses,
they want to talk about it,
while others find itreally hard to talk about.
I'm Jim Rogers,

(00:26):
and this is Hold the Moment,
a podcast from Dementia Australia.
In our episode on relationships,you'll meet Anthony,
who's been dating someonenew since his diagnosis.
And you'll meet Dom, whofound her relationship
with her dad changed quite a bit
while she was caring for him.
In this bonus episode,
an advisor talks about navigatingconnections with others.

(00:54):
- I'm Kristin, an advisor onthe National Dementia Helpline.
When you call us, you'llspeak to someone like me.
We're available 24-hours aday, every day of the year.
We're a free service,
and you can talk aboutanything that's on your mind.
After a diagnosis ofdementia, you might feel like

(01:15):
so many things are going to change,
and one of the ones youmight be really worried about
is the changes in yourrelationship with your partner.
If you're worried about
how your relationship's going to change,
or maybe you've alreadynoticed that it has,
and you want to talkto somebody about that,
Dementia Australia offerssupport on the helpline

(01:38):
or with counselling, sothat you and your partner
can talk about how you're bothfeeling, and talk about ways
that you can make things a little better,
maybe even a little fun as you go.
Nobody wants to feel like a burden,
especially to their loved ones.
It could be really helpful tolet your loved ones know that

(02:00):
that's how you feel,
and you might be surprisedat the response they have.
They might not realisethat that's how you feel,
and there might be some waysthat they can offer to help you
or support you thatare a little different,
that maybe make you feela bit more empowered,
or a bit more in control of things.
Also, your loved one might justtell you that they love you

(02:22):
and that they don't mind,
and that might be enough to remind you
that you're still important to them,
and that they value you just like you are.
It can be really difficultwhen you find out
that you've got a diagnosis of dementia,
and you really want to reach out
to the people that you love,your friends and family,

(02:42):
but it feels like they're pulling away.
I've spoken to a number offriends who call the helpline
because they don't knowwhat to say to the person
who they love, who's justbeen diagnosed with dementia.
And often, I'll ask them,
"What do you usually talkto the person about?"
And you know, maybe it'sfooty, or maybe it's flowers,

(03:04):
or maybe it's a jokethat you've always had,
and I encourage them to just start there.
So if you find your friends pulling back,
you could invite theminto one of the things
you've always shared.
Invite them along fishing,
if that's what you've always done,
and what they'll see isthat you're still you,

(03:25):
and you still like fishing,
and you might still make bad jokes.
One thing that might makeit easier for your friends
is to let them know howthey can be with you,
how they can make thefriendship work easier.
So maybe at golf, it's hardfor you to write the score,
your friend can do that for you,
and you can let them know that.

(03:47):
It can be really trickyat any stage of life
to meet new people, make new friends.
It might feel even trickier,
now that you've got adiagnosis of dementia.
What I'd say is, "How haveyou made friends in the past?"
Think about that, were youa football player before?

(04:07):
Maybe you could find someoneto watch football with.
Did you like knitting?
Maybe you could join alocal knitting group,
meet some other people whohave the same interest as you.
And when you're making new friends,
you don't have to tell themright away, "I have dementia".
It's okay to talk tothem about anything else

(04:27):
you'd want to talk about.
Tell them your name, tellthem your favourite food,
tell them what you liketo do on the weekend.
Eventually, it might come up,
just like anything elsewould in conversation.
Some people living with dementia feel like
it's a great time to try something new.

(04:48):
Have you always wanted to join a choir?
Now's a great time totry that new activity
and meet some new peoplewhile you're doing it.
Have you always wanted to paint with oil,
never known where to start?
Your local council mighthave different activities
that you could try,
and you'll meet newpeople at those activities

(05:09):
who have similar interests.
One of the aspectsabout your relationships
that might be changing isthe sexual relationship.
You might be wonderingabout navigating consent,
now that you've got adiagnosis of dementia.
As your relationship with yourpartner evolves and changes,
you might be wondering, "Isit still okay to have sex?"

(05:32):
Of course it is.
If you are interested
and the person thatyou're with is interested,
you can get up to anything
that you both feel issafe and comfortable.
If you want to talk more about
anything you've heard on this episode,
like navigating new territoryin your relationships,
you can contact theNational Dementia Helpline

(05:54):
on 1800 100 500.
We're available 24-hours aday, every day of the year.
Give us a call.