Living with dementia or someone with the disease can be tough, but as Murrumbidgee Local Health District allied health assistant coordinator Kylie Stein explains, one Wagga group is offering support.
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What is Memory Cafe?
Memory Cafe is set up under the auspices of Alzheimer's Australia. We run it along their guidelines.
It’s partly a support group. People can support each other and we can provide support through Health. It’s also for information sharing, not just referrals, but relevant things that are going on. We use it for education and it’s also used to do activities that are appropriate for people with dementia.
We do music, outings, reminiscences type of activities, a whole range.
We also run it like a cafe, so it’s a bit of an opportunity for the carers to be spoilt. There’s sandwiches, cake, nice cappuccinos, so a bit of spoiling for them and a bit of time out for them.
What’s more important is it’s an opportunity for people to go out as a couple. We find a lot of people lose their social connections when they are dealing with dementia.
Here it doesn’t matter if they tell the same story over and over again. Everyone kinda gets where everyone is at.
Everyone’s at different stages on their journey through the disease. It could be early stage, or we even have a few carers who still come to the group regardless that their partners have moved on into residential care as they have no longer been able to care for them at home.
They still come together to support each other as well.
I think the caring role is extremely stressful and this is an opportunity for them to build some regular type of outing with like-minded people.
- Kylie Stein
It must be very isolating when you’re caring for someone with dementia.
Yes, absolutely. I think losing your social networks – often family and friends don’t understand. They think ‘oh they’re fine’. But it’s the being up all night sometimes, not being able to participate in conversations because they’re scared or worried about making a mistake or not remembering something.
I think the caring role is extremely stressful and this is an opportunity for them to build some regular type of outing with like-minded people; people who really understand what that caring role is like.
They really support each other. Independent of the cafe, they meet as a group for lunch one day a month.
I know a lot of the carers are isolated from family – their family might live away – so they’re managing on their own.
What can be particularly stressful for carers is if they become unwell themselves, because then they’ve got the dual problem of trying to look after themselves and then wondering ‘what am I going to do for my partner’, so they’re in a bit of a crisis situation.
I think that is one of the main concerns. We try to make sure we are looking after the carer as well as the person who has the diagnosis.
This program is run jointly between Intereach and Murrumbidgee Local Health District. Intereach funds the carers to come and MLHD funds the patient. It’s unique in that it’s two agencies working together, which I think we need more of, rather than agencies working in isolation.
This is only going to become more common, isn’t it? We are a growing and an ageing population.
Yes. So we need to encourage people to reach out. It’s more often female carers that reach out. We only have a couple of male carers who come.
Knowing what to expect need is really important.
Is that generational? Not wanting to ask for help?
I think so. It’s difficult to ask for help. It’s a really vulnerable situation you’re putting yourself in, so to seek out help is really hard.
If you don’t know where to go, it can be confronting.
This group has been running since October 2014, when there were eight participants. It’s grown since then, but some people have been here since its inception.
Most of these people want to care for their loved ones at home, so it’s really hard when you finally have to let go and they have to leave.
I think there can be a lot of guilt, worrying if they could have done something better or had more time, perhaps.
Often that is where working with agencies can help; helping the carer understand there is nothing else they can do. They’ve done all they can and they can still support their partner in other ways.
When someone is needing 24/7 care, ultimately that’s going to impact on them. There is only so much a partner can do.
All of these carers would have their own health issues, some minor and some major. You know, waiting to get that knee replacement and having pain all the time, because you can’t go into hospital, you can’t have that procedure because who is going to look after your partner?
A lot of carers worry about getting ill over winter. They get run down, and then who’s going to care for the other person? They always have that responsibility, that worry. It’s hard.
How do people reach out to the group?
Through the known aged care services, through Intereach.
There is a lot of assistance on the medical side, but it is fulfilling those social needs really, and also navigating the system.
If you are new to this, it is confronting as to where to go, and who to turn to.
How important is it to spend time with someone who understands?
I think that is so important – the friendship of the group. They have taken that friendship and they do support each other.