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.
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