More than a third of people caring for loved ones with dementia receive little or no support following diagnosis, according to a survey from the Royal Voluntary Service (RVS).
It comes as over a fifth say their situation has left them wondering if life is worth living.
When Pam Nuttall’s 84-year-old mother Jenny received a COVID-delayed diagnosis of Alzheimer’s in 2022, it understandably changed their lives.
Ms Nuttall became one of the UK’s almost six million unpaid carers and was shocked by the lack of support she was given.
“You’re just a bit numb, you know, you’re trying to take that diagnosis in. You sort of fumble your way through in a way, and I didn’t know where to turn to,” she says.
“We got the mental health team coming in for a bit and then we had some actual nurses.
“But for those first few months, say six months, I just probably didn’t do anything because I didn’t know what to do.”
That lack of support is highlighted by a new report from the Royal Voluntary Service (RVS) which shows that more than a third of those (37%) caring for loved ones with dementia are offered no support following diagnosis.
Using figures from a Censuswide survey of over 2,000 people, the report shows that 40% of those questioned say they feel “heartbroken”, over a quarter feel isolated (27%) or unable to cope (26%), and over a fifth of respondents (22%) said their situation has even made them consider if life is worth living.
The RVS charity tries to help bridge that gap in provision with over 60 dementia activity and support groups in 12 British regions.
Staffed by volunteers they provide events, activities and some much-needed respite for carers.
Samantha Ward from the RVS says: “There’s a lot of support needed for those who are already volunteering their time but are badged as carers.
“They’re not getting the support they need at the moment.
“So, groups that are Royal Voluntary Service run or other community groups where there’s some respite for the carer when their loved one is just having a nice time, a social time, and allowing the carer to do other things is so valuable.”
Ms Nuttall visits her local RVS dementia support group in Doncaster once a week for two hours.
It may not seem much, but for her and mum Jenny those two hours are invaluable.
“It is good to talk,” she says. “It is good to get everything off your chest and talk about how it’s OK to feel not OK.
“That is something that I’m just sort of learning now, because some days I can visit mum and when I leave, I can go home and I could cry. Some days I could just weep. And I have done.”
Her mother benefits too, finding her time at the group uplifting and stimulating.
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Ms Nuttall says: “I can see a dramatic change in her when she’s come home from that group because she’ll be talking to my dad telling him: ‘My friend was there and I’ve been talking to this friend and that friend. I’ve been doing this and I’ve done that and we played bingo’.”
The RVS says the survey also shows that one in four people say they would be willing to volunteer themselves.
It says that if more people do come forward, then the amount of support available to dementia patients and their carers could be both increased and potentially introduced to other towns and cities.
Ms Nuttall hopes that will be the case.
“This support has changed my life,” she says. “Everybody living with dementia or caring for those that are should be entitled to having this kind of therapy.”
