Real stories

The challenges of working while caring for a loved one with dementia

A report from Alzheimer's Society found that the situation for family carers is having a huge personal cost. For people like Yvonne that cost is twofold – both the cost of care itself and her ability to earn through work.

Over 112,000 people have left their jobs to care for loved ones with dementia, which has been hugely detrimental to businesses in England. Without action to provide better support to people with dementia and their family carers, this loss of workforce will cost businesses as much as £6.3bn a year by 2040.

A strained social care system regularly forces family carers, like Yvonne, to quit their job, or change their work patterns, to care for a loved one with dementia.​

Reducing work hours to care for a family member with dementia

'After my mum was diagnosed with dementia I worried about how she was coping at home, and as things got worse, I moved my family from London to Buckinghamshire, so that we could all live together.

'My job is still in the City, so my commute is longer and more challenging than it used to be. 

'Work do allow me to work from home quite a bit, but I need to be able to drop everything if a client needs me. 

'I work after hours in the evening and at the weekend to catch up on time I miss during the week when I’ve had to drop things to attend to mum.

'I feel like I’ve had to put my career on hold, as I have no capacity to take on additional responsibility and therefore go for promotions.' 

An impossible situation

Since Joyce moved in with Yvonne and her family, she is no longer entitled to free social care, which has had a huge effect on her finances. Yvonne is now having to contribute more to the cost of her mum's care.

Yvonne knows that her mum’s dementia will get worse, and that she will need more and more care as time goes on. If they don’t get support from the government, Yvonne isn’t sure how they will be able to afford care.

She is an impossible situation – her mum is precious to her, but how they will manage the increasing cost of care is an ongoing concern when thinking about the future. 

Time to reform

Yvonne’s experience is all too common – up and down the country, families are desperately trying and often failing to get the good quality dementia care their loved ones need. Instead, over a hundred thousand people have no choice but to leave their jobs and try to care for their loved ones themselves. 

The knock-on cost to businesses will only get bigger, especially as more and more people are set to develop dementia, and we are yet to see meaningful action on social care.

The social care crisis is devastating to people with dementia, devastating to their families and carers, a drain on the NHS and this new research shows how badly it is affecting the economy as well. 

This simply can’t go on. 

Meaningful Action

People with dementia and their families deserve so much better than this. Alzheimer’s Society is calling on the Government to end the dementia care crisis once and for all by putting forward proposals in the Queen’s Speech that result in long-term social care reform. 

We want to see radical action to reduce the cost of care to individuals, while improving the quality and accessibility of dementia care. High quality dementia care should be universal – it should be equally available to everyone who develops dementia. 

Why should families like Yvonne’s struggle to get the right support for their loved ones, without having to quit their jobs? Help us make their voices heard by Government – join the Fix Dementia Care campaign today.