I Have a Learning Disability & Care for my Dad who has Vascular Dementia

Adam Joesbury lives in Birmingham with his older brother Neil and his dad Bob. Adam has proven that you can be a good Carer even if you have a learning disability. Adam is passionate about highlighting this issue and is calling for more support for Carers like him.

Background
After Bob Joesbury’s marriage broke down, he took his two sons, Adam and Neil to live with his parents who helped him raise them. Adam was born with health problems and, as he grew up, Bob noticed he could only concentrate for short periods and was diagnosed with a learning disability at the age of five. 

Bob and Neil have been Carers for Adam ever since, but in 2017 Bob had a bleed on the brain. Bob was referred to a memory clinic and discovered that he’d also had two mini-strokes and was later diagnosed with vascular dementia. 

“From that day in 2017, everything changed,’ says Neil. “I became not just a co-Carer but a Carer for two.”

Adam Became a Carer for his Dad
It also meant that the tables had turned and Adam became a Carer for his dad too. Neil understandably felt overwhelmed at the prospect of caring for two members of his family, but with support from Forward Carers and Birmingham Carers Hub he put steps into place to cope.

Neil said, “It’s because of Adam looking after dad that I’m able to continue working part-time and do other things that I enjoy as well as volunteering for Forward Carers as a Carer Ambassador.”

To help Adam try and understand what dementia is and how best to look after Bob, Neil took his brother to some dementia Carer support groups. Adam struggled with these support groups and found them boring. With the help of a dementia advisor from the Alzheimer’s Society, she devised some practical sessions tailored for Adam to explain what dementia is in a visual way and they’ve really helped him.

Adam said, “First my learning disability wouldn’t let me understand dementia. But doing it with pictures makes it easier. And I like drawing to understand when people are talking to me.”

With this support, Adam and Bob can be independent while Neil is at work. Adam takes his dad shopping and cooks for him. When Bob is at the dementia café, Neil and Adam can enjoy some time together and have a bit of respite. It’s a real team effort and they all look out for each other.

Support from the Community
Neil’s workplace (M&S) is very understanding and allows Neil to have his phone with him on the shop floor, this way, Adam can call him if he’s having a bad day.

As well as a supportive workplace, Neil, Adam and Bob are well-known in their area and are lucky to live in a community where people look out for them.

“We can’t go anywhere,” Adam said, “because someone will recognise Neil and he stands there for half an hour talking!’

Bob went out one day to the cashpoint he usually uses but finding it broken, he went to a different one and got lost. Local businesses know about Bob’s dementia and luckily for him, staff in Iceland knew where he lived and pointed him in the right direction. Although, Bob wears a GPS tracker to give Neil peace of mind while he’s at work, knowing that local shops, pubs and cafés know where they all live is reassuring should Bob ever get lost or Adam needs any help.

Adam and Neil would like people to be more patient and helpful, as they say this makes a huge difference to them. 

Changing things for Carers with a Learning Disability

Adam is passionate about making life better for Carers with a learning disability. He doesn’t want them to go through the same struggles he did.

Adam explains, “The first time I meet people I get nervous, and when people talk too quickly I don’t understand them. If there were more groups for Carers with a learning disability, it would be good.”

People do seem to be listening, and the first ever support group for Carers with a learning disability has started in Birmingham, run by local advocacy service CASBA. Further information about CASBA’s support groups for Carers with learning disabilities can be found here.

It has taken Adam huge courage to speak out, including talking at an Alzheimer’s Society conference where there were 200 people. Adam wants to write to the Prime Minister to tell him what needs to change for Carers with a learning disability. “I’d tell the Prime Minister that people with a learning disability can be Carers,” he said. 

“People think you can’t be a Carer with a learning disability, but you can. I ignore those people. What’s the point in arguing? You won’t go anywhere.”

A dementia advisor from the Alzheimer’s Society, wanted to recognise Adam’s achievements and has nominated him for a Dementia Care Award where he will attend an award ceremony in London on 13 June.

Well done Adam and fingers crossed for 13 June, whether or not you win, you are a winner in our eyes!

Support for Dementia Carers
Dementia is a disease that affects the whole family, if you help someone who is living with dementia, support is available from our Dementia Carers Hub. For information, help and advice, call 0333 006 9711 and ask to speak to one of our Dementia Carer Advisors, or email: dementiacarers@birminghamcarershub.org.uk.

Take a look at what support we have on offer for Dementia Carers.

Some of this information has been based on an interview Bob, Neil and Adam did with the Alzheimer’s Society as well as a podcast that they recorded, which you can listen to here.