Prof June Andrews talks about the financial worry that having to pay for care can cause.

Note for carers; At the point of diagnosis you are filled with care and compassion for the other person, but it’s important not to be a hero. You may have to bear the brunt of anger and grief, as well as dealing with the problems that have arisen as a result of the illness, which might include questions about future finances, no longer being able to drive, and how to just live together. So you need to be prepared to learn how to care for yourself.

It might be a revelation when you realise that in spite of our internationally envied health and social care system in the UK, there are many services that would be useful but have to be paid for, even if they are organised by the local council. If you are wondering why a friend or neighbour affected by dementia does not take up everything that is available, consider whether finance may be an issue.

Our house is worth a lot of money, I know, but there’s not much cash now our investments are getting no returns. If I sell the house, she’ll be even more confused by the move. We look rich but I can’t afford the home help. I’m not having that means test. (Pat, age 85, sister of Helen age 81)

Many older people avoid social services and social work departments because they are afraid that they’ll lose control of the situation. As a friend you could do them a favour by making sure that they know about the “Wealth check” that can be done discreetly and privately by a charity like Age UK which can find ways of identifying additional income that they did not know about. A huge number of allowances are never collected by carers. A lawyer could do it too, if the family can afford the fee.

Unfortunately the social services assessment may also reveal that you don’t qualify for much support. In Scotland there is a guarantee of one year’s post diagnostic support from the health and social care system, but that is not financial. It is more focused on information about your options and “signposting”. Some local authorities and voluntary organisations will do a “wealth check” for you to help you work out whether you are getting all the allowances to which you are entitled. If you want to stay at home and you suspect that you will not be eligible for social services support as a result of a means test, it may be worth talking to an Independent Financial Adviser about how to manage the cost of your future care needs.

Staying at home is made possible by a range of interventions, some of which have an associated cost. It is important not to worry about money, and to avoid being worried you may need to do some research and ask for advice. We are fortunate in the UK in the extent to which there is a safety net for people who don’t have significant financial resources. There are some useful websites and organisations that will give you some idea of how to find out what is available to you from the social care system. There are also supports which can be given to you through voluntary organisations.

Note for people with dementia and also everyone else! Powers of Attorney can focus on financial and/or welfare issues, and it is never too early to choose the person, or people (your attorney/s) that you would wish to support you with decisions, or advocate on your behalf, if you are not able to do so personally at some point in the future. An attorney must make the decisions you yourself would have made so it is important to nominate your attorney early, by way of a Power of Attorney and then talk to your chosen attorney about what you want, so they understand your thinking while you are still able to tell them.
Useful links

Alzheimer’s Society report: Dementia – the true cost

Dementia tax – find out what it is and why people should not bear the sole responsibility for saving and paying for their care.

Care home fees – in England, there is a national standard for charging and for deciding who is responsible for paying

Information resource about NHS continuing healthcare funding in England

Information on paying care home fees in Scotland

Age Scotland fact sheets

Citizens Advice Scotland

Reviewed March 1, 2019