The dementia tax (and the subsequent U-turn) have become major issues of the election. The Conservatives initially announced that anyone suffering a long-term illness like dementia could end up spending the vast majority of everything they own on care. Theresa May has since U-turned on the issue, and announced a cap on care costs. However, before anyone caring for a dementia suffer breathes a sign of relief, it's worth bearing in mind that there are still five horrific 'dementia taxes' that can wipe families out.
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The term 'dementia tax' was used to described the policy outlined in the Conservative party manifesto to insist that more people pay for care - whether residential or in their own home - until they are down to the last £100,000 in their estate.
Crucially, this includes people's homes - so they could technically erode the vast majority of all they have saved for in their lifetime. It was noted that this would mean those who died quickly could pass on hundreds of thousands of pounds worth of assets, while those who were very ill for a long time would pay a 'dementia tax'.
For those whose older relatives need care for dementia, however, this is not the reprieve it may seem, because there are still five horrible ways they will pay the price of losing the dementia lottery
The hidden dementia taxes
1. Financial chaos in the early stages
Long before sufferers need care, they may start to struggle with their finances, which can lead to severe problems. They may forget to pay bills or pay off debts, or they may forget PINs, so be unable to access cash. Supermarket shopping may also pose the most enormous challenge - resulting in all kinds of overspending and waste. The early stages of dementia are littered with final demands, fines and interest payments run up by people struggling to cope.
What can you do? In the very early stages it can be enormously helpful to do simple things like paying regular bills with direct debits, setting up contactless payments, and doing a weekly online shop on a sufferer's behalf, to ensure they have the basics.
2. Erratic spending as the illness progresses
Sufferers may find themselves spending money on things they would never have considered before, sometimes running up thousands of pounds worth of debt, and hoarding things they neither want or need.
What can you do? Some people will set up joint accounts with their loved ones, but that's not a foolproof way to stop them spending. Ideally, long before anyone gets ill, you should have a lasting power of attorney in place. This allows someone you trust to step in and manage your money for you when you lose what's known as 'mental capacity.
3. Falling victim to scams
Unfortunately the disease makes sufferers very vulnerable to approaches from criminals. They can be persuaded to part with cash for everything from lottery scams to doorstep cowboys and approaches from Nigerian noblemen in temporary financial difficulties. Unfortunately, the scammers will often impress upon the sufferer how important it is not to tell anyone about the transaction, so their carers may know nothing until it's too late.
What can you do? If they have a lasting power of attorney in place, it can be difficult to know when to activate it. However, this kind of risk means it's worth doing sooner rather than later, to protect them from untoward advances.
Dementia affects everyone differently, but can lead to a huge personality change, causing sufferers to become paranoid or aggressive. It can make it very difficult where they have strong views over whether, for example, they are prepared to move into residential care, or whether they are willing for their home to be rented our or sold to pay for care. It can make the process incredibly difficult for anyone concerned - especially if they suddenly find themselves stuck with care bills.
What can you do? Again, a lasting power of attorney is the answer. If you haven't set one up, you may need to go to the court of protection, who will assign a third party to make these decisions.
The cost to the close family of sufferers is difficult to measure. In some instances, a family member will have to give up work to care for them. If they are in their 50s, this may be the end of any meaningful career. In others they will have to scale back their responsibilities at work, or run themselves ragged trying to be a full time carer as well as a full time employee. Having to care for a parent with dementia can have as much of an impact on you at work as having to care for a young child - with a corresponding effect on your career progression and pay.
What can you do? Dementia care is something that needs to be managed by the family as a whole - not just the most compassionate person - so before anyone shoulders the burden alone, it's vital to try to bring the family together. If the family has a history of struggling with discussions like this, it may be the kind of meeting that needs a mediator.
If you are taking one a caring role, meanwhile, it's important to talk to your employer. Many specifically have elderly-care policies, designed to make juggling work and care responsibilities less impossible. Finding a flexible employer with the right policies could mean you are able to continue working, and that you don't lose ten years of your working life to caring for a parent.