Andy Burnham has spoken candidly about the devastating pressure his mother faced while caring for his father, who had dementia, saying he watched her “sink” beneath the weight of the responsibility as the Prime Minister backed Our News Outlet’s campaign for unpaid carers.
The Prime Minister acknowledged that his family became so focused on his father’s deteriorating condition that they failed to recognise how severely the situation was affecting his mother. In hindsight, he believes they may also have delayed the decision to move his father into residential care.
In a deeply personal interview, Mr Burnham called for greater recognition and practical help for unpaid carers such as his mother, Eileen. She cared for his father, Roy, until he died from Alzheimer’s disease in September at the age of 85.
The Prime Minister has previously revealed that his father was unaware his middle son had risen to become Prime Minister.
He said: “In my experience, the emotional impact becomes an unbearable burden. The weight of it becomes too much.
“I know that will resonate with some of your readers who are living through something similar.
“I saw it first-hand. I watched my mum sink beneath the size of that burden.”
He continued: “My brothers and I have talked about this. We were so focused on the person with dementia that we overlooked much of what was happening around them, particularly the daily strain my mum was carrying.”
Prime Minister Andy Burnham speaking to Our News Outlet executive health editor Shaun Wooller
“The country relies on people caring for their partners and loved ones without pay. We have to recognise them, listen to them and respond when they say they need more help to make caring sustainable.”
His comments come as a major Our News Outlet appeal aims to raise millions of pounds for an innovative support programme for unpaid dementia carers.
Dementia Carers Together will provide new six-week courses nationwide for relatives and friends supporting someone living with dementia.
Run in partnership with Alzheimer’s Society, the programme will offer practical guidance, information about carers’ rights and advice on the services available to families.
The sessions will also give participants the opportunity to meet others facing similar circumstances, helping to ease the isolation, fatigue and immense responsibility that can follow a dementia diagnosis.
Mr Burnham said he “strongly supported” the appeal, adding that his own family might have benefited from this kind of guidance rather than trying to manage without enough practical assistance.
An estimated 2.5 million people across the UK provide some form of care for someone with dementia. Four in five have reached crisis point at least once.
The Prime Minister said his family had been determined to keep his father out of a care home for as long as possible, but admitted they had not fully understood the toll that decision was taking on his mother, a former GP receptionist.
Prime Minister and former Manchester mayor Andy Burnham taking part in the Great Run for Alzheimer’s Society in 2024
He said: “For many years, our family operated on the basis that we did not want Dad to go into a care home. We believed we would find a way to keep him at home.
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“Because we felt so strongly about that, and because our attention was constantly on Dad rather than on Mum, I think we may have waited too long before making that decision.
“When Dad eventually moved into care, the staff were excellent. They did a very good job, and in those circumstances it was the right choice.
“But getting to that point was extremely difficult.”
Mr Burnham said he and his brothers eventually realised a change was necessary after seeing their mother become increasingly worn down and sleep-deprived.
He said his family’s experience had also shown him how social care can fail to relieve pressure on households in crisis. Short, 15-minute home visits from paid carers quickly became insufficient for the complex needs of people with dementia and those supporting them.
He described the visits his father received as “quite chaotic at times”, explaining that carers could struggle to move him from his bed to an armchair within the limited time available.
The Labour leader, who was elected MP for Makerfield in June, said his plans for a National Care Service would strengthen support for unpaid carers and help families continue caring for relatives without being pushed beyond their limits.
Prime Minister Andy Burnham visiting Watford General Hospital on Monday to see efforts to improve patient flow through A&E and reduce the impact of winter pressures
Discussing the Dementia Carers Together courses, the Prime Minister said: “Often, a family receives a diagnosis and is handed paperwork and various documents, but very little of it is genuinely useful.
“A lot of the information arrived in the form of pamphlets. It would have been far more helpful to receive practical advice about how the condition might progress, what to prepare for and what support would be needed. It would also have helped to connect with people in similar situations, which is what these classes will provide.
“By attending sessions like these, people can begin to build a support network of their own.
“From what I have seen, even a small amount of help can make a situation feel manageable. Without that support, it can suddenly become completely overwhelming.
“I can absolutely understand how valuable these sessions would have been.”
Michelle Dyson, chief executive of Alzheimer’s Society, said: “We are extremely grateful to the Prime Minister for sharing his family’s experience and supporting our Dementia Carers Together Appeal.
“No one caring for a person with dementia should be left to cope without the support they need.
“Dementia Carers Together will offer essential advice, guidance and the opportunity to connect with others who understand what caring involves.
“We hope people around the country will support the appeal alongside the Prime Minister, enabling us to reach more families at the moment they need help most.”
Number 10 said it had removed the Carer’s Allowance cliff edge, meaning unpaid carers should no longer lose their entire allowance after earning just a penny above the weekly limit. It also said it was implementing commitments set out in its unpaid carers action plan, including making it easier for carers to access services and support.
