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True cost of dementia care

Alzheimer’s Society has uncovered the true cost that people are paying for dementia care. The research (2017) shows the typical total cost of dementia care for one person is £100,000. For many it can be much higher. It would take someone 125 years to save that much if they put away the amount they contribute, on average, to a pension. It’s impossible to expect everyone to be prepared for these costs, and there can be devastating consequences. The Society often hears from people affected by dementia who have spent everything they have on care and have even sold their home. Others who need significant support have felt forced not to access care because of the expense. This puts their health, and sometimes the health of those around them, at risk. ‘Some of us can’t afford basic adaptations – I couldn’t afford a bed sensor for my mother. She went missing one night and the local police force sent out two helicopters and two cars to search for her. What would’ve been more cost effective?’ People living with dementia face higher charges for care and support than those with other conditions. Dementia can be complex and involve symptoms that need tailored support. This means care providers often charge a premium rate for dementia care. We know that in some places this is up to 40% more than the ‘standard’ price. This extra cost isn’t covered by the NHS, even funding meant to cover both health and care needs, such as NHS Continuing Healthcare, is normally out of reach for people with dementia. Instead, people who need the care to survive end up paying more. Cash-strapped councils fail to pay or are unable to cover the extra money needed to provide complex support. When councils can’t cover the full cost, people with dementia and their families are forced to pay a ‘top up’ payment. This can be hundreds of pounds a week. The Alzheimer’s Society are adamant that no one should have to spend everything they have on care. But people living with dementia spend a disproportionate amount of their assets on the care they need. Of the £26 billion a year spent on dementia care in the UK, two thirds is shouldered by those affected. There is a strong feeling about how unbalanced the division of responsibility between individual and state currently is. People affected by dementia accept that they should make some contribution towards the cost of their care. But this should be a fair amount that does not impact on their wellbeing or ability to live a normal life.  The cost of home care for some people can cost up to £38,000 a year.

Unfair Approach to care costs This issue is made worse by the lack of a cap on care costs. In England, the amount after which someone pays for care – assets above £23,350 – has not changed in eight years. The combination of expensive care, and no limit on what someone can spend, means some people spend nearly everything they have. At the same time, the number of local authorities offering an increased rate to providers to reflect the extra cost of dementia support has dropped. This has meant increased demands for top-up fees from families, poor quality care from providers operating on a shoestring budget, and providers even refusing to accept people with dementia. What aggravates people most is a person with dementia who paying for expensive care sitting next to someone who is paying nothing. The research (Alzheimer’s Society and YouGov, 2018) shows people’s strong feelings about costs. Nearly three quarters (73%) of the public think it’s unfair people with dementia face using their assets to pay for care, while those with a different condition get support through the NHS. The researchers also found 79% of respondents believed someone could face spending everything they have on dementia care. Also, three in five people now worry that any savings they have will be spent on care and support, leaving nothing to pass on to their loved ones. This is compared to 40% before the General Election in 2017 (Alzheimer’s Society and YouGov, 2017).

Summary This report provides further evidence of a fractured social care system that is blatantly leaning on carers to pay for services that people with dementia so desperately need. It is an indictment of central government that arguably the people who need the most expensive care are being given the least support. We rightly bang on about equality in social care services and society as a whole, but, it is hard to see why people with dementia are paying for expensive care, while some others are paying nothing. Where is the equality in that? Albert Cook BA, MA & Fellow Charted Quality Institute Managing Director Bettal Quality Consultancy

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