Carers of people with dementia talk about the impact on their lives, finances and work as part of the Alzheimer’s Society’s campaign for an urgent long term plan for how to deal with the dementia crisis.
A report late last year from Alzheimer’s Society highlighted the impact on business of employees quitting their jobs, retiring early or reducing their hours to care for someone with dementia. It estimated the annual cost at £3.2bn.
The research for the report was carried out by the Centre for Economics and Business Research and estimated that that cost will rise in the next years due to the UK’s ageing population and cuts in social care. But what is it like from a carer’s perspective?
Yvonne has personal experience of the caring crisis. She is from Buckinghamshire and is caring for her mother who has dementia and for two children while holding down a demanding job in the City.
She says: “After my mum was diagnosed 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 do 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 the 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.”
There has also been a huge financial impact. She says: “Since mum moved in with us, she’s not entitled to free social care anymore, which has a huge effect on finances as we’re now having to contribute towards the cost of her care. Her illness is only going to get worse, and she’s going to need more and more care.
“If we don’t get support from the government, I don’t know how we’ll be able to afford it. I don’t know what the future holds – mum is very precious to us but the financial situation is really concerning.”
Philip is facing similar financial problems. His experience of applying for dementia support for his mum, Sylvia, was far from easy. He and his sister found the process to be inefficient and opaque. It has been a process of constant confusion, delays and red tape. Since 2012, he and his family have spent around £160,000 on Sylvia’s care, including around £12,500 on care for her at home. All of Sylvia’s savings have been used up.
He says: “Mum wouldn’t survive more than 48 hours without nursing care. Why have we had to spend £160,000 to make sure that doesn’t happen?”
Jag coordinates her mum’s care from her home in Manchester – 200 miles from her home in Maidenhead.
For three months she was driving 400 miles every week to her mum’s house and back. It all became too much and she ended up seriously ill.
Jag ended up leaving her job because coordinating her mum’s care was taking up so much time. She was constantly having to search for carers, speak to the council and try and get different health professionals to speak to each other.
With no income coming in and her savings having been depleted, she was no longer in a position to top up her mum’s care.
She had promised her mum that she would not have to move. Jag ended up leaving her job because coordinating her mum’s care was taking up so much time. She was constantly having to search for carers, speak to the council, and try and get different health professionals to speak to each other. However, that meant she didn’t have the money to top up her mum’s care.
She has also promised her mum that she wouldn’t have to leave her home. She says: “It’s been utterly exhausting, but you keep at it out of love, don’t you? I just want to make sure mum has the best life she can in the time she has.”
The Alzheimer’s Society is running a campaign to raise awareness about the problem and press the Government to urgently address the dementia care crisis.
It says the Government needs to develop a long-term plan to address social care crisis. In particular, it wants to see radical reform to address the specific needs of people with dementia, to ensure that people with dementia can participate in their communities on the same basis as everyone else and to close the research funding gap between research and other disease areas to ensure new treatments and life changing care interventions are available to everyone living with dementia, as soon as possible.