Dementia, and the “dementia tax”, recently became a leading General Election issue after all the major political parties in England made commitments aimed at addressing the social care crisis. But what is the potential impact of the so-called “dementia tax”? We asked Nicola O’Brien, Public Affairs and Campaigning Manager at the Alzheimer’s Society, to explain.
The phrase ‘dementia tax’ has been used widely. The term refers to the enormous injustice in the care system for people with dementia. In the lottery of life, people with dementia are forced to spend hundreds of thousands on care – unlike those who develop cancer, heart disease or diabetes.
This is because dementia cannot be cured or effectively treated so the care is predominantly ‘social’ rather than ‘medical’, such as help with washing, dressing and eating. Social care is means-tested, meaning people affected by dementia have to foot the bill. This applies to everyone who has assets – including their house – over £23,000. In sharp contrast, if you develop another condition such as cancer, heart disease, or diabetes, you will receive NHS care free at the point of use.
Dementia is the biggest killer in England and Wales, taking more lives than heart disease. By 2021 850,000 people in the UK will be living with dementia. Someone develops the disease every three minutes. Addressing this problem is key.
Successive governments have placed funding of dementia care squarely on the shoulders of people affected, with families being forced to pay for essential care out of their own pockets. For a long time the broken system has been pushed under the carpet. A recent Alzheimer’s Society investigation laid bare the unachievable cost of dementia care, calculating that the typical person’s bill for dementia social care would take 125 years to save for – well over a lifetime.
What this means is that even if people pre-emptively saved, as they do for their pension, it would be impossible to prepare for the cost of living with dementia. This bill, the “dementia tax”, if not resolved, could topple ‘generation rent’, who have fewer assets than previous generations, and are at higher risk of developing dementia as people continue to live longer.
Families across the UK have told Alzheimer’s Society how they have even been forced to sell off personal possessions or cut back on food and heating bills to plough money into care costs. This also applies to people who do qualify for state funding, but are forced to pay top-up fees as the Local Authority can’t meet the cost.
Judith, from Surrey, whose mum, Joan, had Alzheimer’s disease said: “By the end of her life mum couldn’t eat, drink, speak or move anything but her eyes, yet she still wasn’t applicable for state funding despite paying taxes and National Insurance all her life. She paid for all her care right until she passed away.
“My mum ended up spending over £500,000 on her dementia care. She would be devastated to know her money was gone and she could only leave her grandchildren a fraction of what she had hoped. She was so proud to think they would be sorted financially in the future.”
The new political focus on dementia is welcome as it is widely known that the broken social system is one of the biggest challenges facing society today. It is this system that people with dementia rely on for the daily support they need.
Alzheimer’s Society are challenging the next Government to create a long term, sustainable system for funding dementia and asking people to unite against dementia in your area and campaign to fix dementia care today.
Woman&home have been proudly supporting the Alzheimer’s Society since May 2016.