being and becoming a carer
family and community support
Informing family and friends
Starting the conversation
‘Perhaps the most valuable thing we could suggest is to start the conversation - together - as a family – now. This conversation needs to become a natural part of our living, sharing and caring together – as family and friends’.
Dementia Australia urges us to start the conversation
Dementia is not something that happens to an individual – it is a whole family, a whole neighbourhood who starts ‘living with dementia’. Being able to talk about it, letting people know, is a big support – but how to do that in a positive way?
With your partner
Some things that may be helpful to talk and think about, if dementia has not progressed significantly:
What do we want our lives to look like? | Researching others’ experiences and thoughts | talking to family | thinking about guardianship, wills, end of life plans | thoughts about going into full time care at a later stage
However, often dementia may have progressed and you may not be able to have these types of conversations with your partner. You can then be in the difficult position of having to make decisions for them and instead of with them.
Starting the conversation
with your parent
Again, the moment may have passed to have a conversation with your relative – often your mother and father. We have collated some stories about the experiences of adult children caring for their elderly parents.
Starting the conversation
with the wider family - when?
Often a conversation will be had as symptoms cannot be ignored and family get worried. This happened in Sue’s story.
Holding a family a meeting – some things to think about
We found these websites give some good ideas about holding a family meeting.
Caring from a distance?
It can be hard to know how to include the family in caring if they live far away. Below is a help sheet from Dementia Australia that addresses this:
feeling a little overwhelmed?
We found this to be quite a beautiful set of, what the Family Caregiver Alliance calls ‘Real-Life strategies’ for dementia caregiving. It takes the pressure off the carer, which is a thing we need to keep reminding ourselves to do, and is a little humorous I think.
Creating a dementia-friendly place to live
Letting the neighbours know
Charlie was always friendly with our neighbours, always had a ‘good morning’ and a smile. He loved to sit on the little wall outside and just watch the world go by. We had one incident when he pee-ed on the grass verge outside the house, and one kind neighbour, who knew about the dementia, let me know as he hadn’t quite redressed! Another time he started ‘pruning’ the tree next door, and got grumpy and ignored with the neighbour who asked him to stop. Whoops! I realised that this friendly guy wouldn’t have known why.
So I wrote a letter to all my neighbours explaining about the dementia. I also asked them to keep an eye out for him, in case he decided to go for a walk. I put our photos on it for people who didn’t know us.
Fortunately, I could see him from the window but he could move quickly too – we lost and found him a couple of times. That letter made a difference. A couple got in touch, and some people made an effort to stop and chat when they passed by.
A BIG THANKS TO DIANE
Diane ran the local coffee shop and she ‘got it’ when we explained about Charlie.
She would always make him feel welcome when we came in and remembered how he liked his cappuccino – with lots of chocolate on top! Sometimes, when she wasn’t too busy, she would just come over and chat – and she always spoke to Charlie himself (not like lots of people who only spoke to me).
And when we got to a wheelchair stage, she never minded us moving the furniture a bit. It made such a difference to know there was somewhere local where we felt welcome.
CLEANING HIS CUP
There was a funny time when we went to a busy ‘up market’ bakery/coffee shop and Charlie had his usual cappuccino. When he had finished, he started cleaning the cup with his paper napkin. He had started doing this at home too.
We were being served by a young women, maybe 20 years old, and she asked me what he was doing. This was quite obvious of course – ‘He’s cleaning his cup’. ‘But why?’ she asked. I wasn’t quite sure how to answer but I ended up saying, ‘Well, because he wants to! And all I can suggest is that you remember your question, and when you get to be 85 years old, maybe it will make more sense – but what is really important is that he is enjoying himself, and he enjoyed your coffee!’
I realise I wasn’t sure whether to mention the dementia or not – in some situations it seems a bit ‘heavy’ to launch into something a 20-year old may not have experienced – if she had, no doubt she might not have asked the question! But it did make me think I needed a little ‘friendly’ leaflet to hand out at such times.
making others aware – identity card
Have some ‘id’ for the person you care for to carry.
You can register someone with the Police Missing Person’s Unit in case they go walking and get lost, and you can get a safety bracelet through Dementia Australia.
You could also get a disc engraved to wear as a necklace or bracelet.
An initiative by Dementia Australia - advocating for the establishment of dementia friendly communities. Encourages community members to become 'dementia friends'. Community members are able to create an account and go through a small training module to become more aware of dementia.
Have a look at this template - create your own card.
When you travel
Wear a name tag – both/all of you. That way it seems ‘normal’ (as if in a group tour) but it means if you lose contact, it is easier to find someone!
Dementia Friendly Communities
Dementia friendly communities are springing up all over the world. It’s a program to make everyone in a place aware of dementia and how they can help support those with dementia.
Dementia Australia is encouraging all Australians to get involved:
‘What is a dementia-friendly community?
A dementia-friendly community can be described as a city, town or village where people with dementia are understood, respected and supported, and confident they can contribute to community life.
In a dementia-friendly community people will understand dementia, and people with dementia will feel included and involved, and have choice and control over their day-to-day live’.
And see some of the other community initiatives underway: https://www.dementiafriendly.org.au/communities-in-action
Brecon, Wales, UK
Inspired by one amazing woman, a group of like-minded individuals got the Town Council and Alzheimer's Society involved, and held a public meeting to explore the idea of making Brecon ‘dementia friendly’. That was in 2013 – and it only took a couple of years for them to enrol members in a not-for-profit company, raise funds, and form the Brecon Dementia Action group. They started awareness programs, which included all staff of local medical centres, the library and local theatre, the police and fire services, staff in banks, coffee shops and more.
That made Brecon not only friendlier for people with dementia, especially those living alone, but also safer. That must be so reassuring for family members in Brecon. Every town and suburb needs to become a Brecon!
What is The Restaurant That Makes Mistakes?
Wow! What an amazing initiative. A restaurant in the UK – the first ever restaurant staffed by people living with dementia.
Channel 4 made a series about it: The Restaurant That Makes Mistakes which shows how with the right support, and small adjustments, many people with dementia can stay independent and continue to contribute in the workplace.
If you are in the UK, you will be able to watch this amazing story on Channel 4: https://www.channel4.com/programmes/the-restaurant-that-makes-mistakes
Alzheimer’s Research, UK
This site is great for kids – young kids/juniors/teens (choose your age) – to find out more about dementia for themselves – kids can leave notes on the Memory Board.
Baker, Jess. 2015 Five tips on how to talk to kids about dementia. The Conversation, 16/09/2015
Webpages for all age groups.
See our resources page for a list of books for children