Caring for a person with dementia: money

Most people tend to be private, even secretive, about their financial arrangements. Parents may never have actually told their children what savings they have, how they are invested and how they organise their money, day-to-day. So its not surprising that people with dementia are slow to admit when a problem develops with their finances and are reluctant to let anyone have access to their affairs.

In the case of couples there may be a gradual transfer of responsibilities without too much difficulty. One partner may notice that the other is making unusually frequent withdrawals from the bank or they may notice that money is being spent on unnecessary or excessive purchases. One husband described discovering that his wife had been buying two of everything and that her wardrobe was full of unused new clothing. Another found that his wife had bought 6 toothbrushes and had to return them to the chemist with an explanation of his wife’s problem. After that incident, he made sure he went shopping with her.

One wife was able to gradually take over responsibility for money from her husband. She realised that he was having difficulty reconciling their accounts and, later, remembering how to write cheques.

Two sisters became concerned about their mother who was continuing to live independently. They discovered that she was making frequent large withdrawals from her bank but bills weren’t getting paid and there was no evidence of her having made any big purchases. In this case they were able to get some cooperation from her bank manager because there had been a temporary power of attorney order made at an earlier time.

Another daughter complained that social services had failed to notify the appropriate authorities of her mother’s condition and as a result she was sent a summons for non-payment of her council tax.

Many unpaid bills and a summons for non-payment of council tax.

Age at interview 60

Gender Female

Age at diagnosis 80

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The money was the main problem. She wasn’t paying her gas and electricity bills either. She got a summons for non-payment of Council Tax and that annoyed me, because after all, the social worker was employed by the same people as was asking for the Council Tax. The social worker hadn’t bothered to get in touch with the Council Tax people and say, ‘Hey, this person doesn’t need to pay it. When I told her to sort it out she did. There was no problem but it wasn’t done automatically, so mother got a court summons.

Then she wasn’t paying gas and electricity bills, she was just putting them in a drawer. So every time I went down there I had to go through the drawer to try and find them and then take them off to pay them. Because it is actually quite complicated to pay a bill, isn’t it? You’ve got to find a chequebook and you’ve got to know the address and a stamp and so on. And again, lucky wed got the money.

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One woman discovered by chance that her partner had become overdrawn as the result of uncontrolled spending. Though they weren’t married, she was able to get her bank to give her third party access to his account and even let her have a cheque book to use. Later, after much soul-searching, she removed and destroyed his credit cards.

Examines her ethical position in relation to denying her partner access to his bank account.

Age at interview 62

Gender Female

Age at diagnosis 61

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In general terms about what do you think are the rights and wrongs of doing things behind peoples backs when they have dementia?

I think if by not doing it you are giving them, you are putting them in a situation that’s going to cause problems for them or danger to them, I have no qualms at all. I think the ethical problems, the ethical problems to me of cutting up [my partner]’s credit cards, it was not a problem. The ethics if you look at them bluntly would say ‘Oh I have no right to take his credit card off him. But the other side of the coin was he was going out and drawing all this money out and more money than hed got in the bank anyway because the cash point in the end was refusing to let him have any money.

Therefore having left him his Barclaycard to get petrol with he was then starting going in the bank and using his Barclaycard in the bank to draw money out. Because I found out, I found hed got a £100 in his pocket and I thought how did he get that, he hasn’t got his card anymore and that’s what I realised was happening.

So taking his credit cards off him, and I had to do it surreptitiously because he wouldn’t give me them because that was part of his daily routine you see. And routine is very important for somebody with dementia.

No I had no, that to me was not an ethical dilemma. I realised it was an ethical topic so to speak but it didn’t give me a dilemma. It was just a natural progression of what had to be done to keep him safe basically, safe financially if in no other way. It didn’t give me any qualms at all.

In fact, I didn’t want to do it, I would far rather not to have done it, but I don’t think I had any choice. And it’s no, it was no good me putting them in a drawer because he was going through the drawers look, just generally sort of now and then he would go through the drawers. I had to hide my keys and everything because again he would get the keys and put them somewhere else or go out to the car and leave them in the car. So I have to do lots of things surreptitiously for his protection basically or for my protection as well. And I don’t have any ethical qualms about those.

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In general, for obvious reasons, a person’s privacy is carefully protected. It is extremely difficult for anyone, even well-intentioned relatives, to access personal information or even to pay bills without legal authorisation, no matter how urgent. Arranging for bills to be paid by direct debit was a useful way of making sure they got paid. One man objected to this because he had been in the habit of paying a bit at a time out of his weekly drawings of his pension – not a satisfactory method once he began to forget what he had or hadn’t done.

There are two main ways of transferring responsibility for financial arrangements away from a person who for some reason can’t, or doesn’t want to, continue to be in charge of their own affairs. There was no doubt in the minds of all carers that Power of Attorney most suited their needs. They all advise other carers to make sure this is in place early on. The reason why this is important is that it can only be arranged if the person giving over the power to another is considered to fully understand what they’re agreeing to. Not surprisingly, entrusting their affairs to another, especially when that person seems to be awfully keen for it to happen, is just what many people are likely to consider dangerous and unwise. They may suspect that their hard-earned savings are going to be taken away and used without their knowledge or say so. They may also suspect that it will give permission for other changes to be made that they would not wish for, such as putting them in a home. As one daughter explains this can’t happen, but it would be hard enough to explain that to anyone, let alone one who is confused.

Solicitor explained to her mother and to her what was and was not possible with Power of Attorney.

Age at interview 59

Gender Female

Age at diagnosis 82

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He said to my sister ‘I think your mother is perfectly able to do this. In fact he said that with her present, she was quite happy, she wasn’t offended by it and hed explained to her that he had to ascertain that she was able to do this. ‘Well why wouldn’t I be?’ she said. And he said ‘Well you know there are all sorts of reasons that might be so but we don’t need to go into those, I just need to be satisfied you are able to do it and you agree to it, you’re not being pushed into it by your family or anybody else. ‘Oh no,’ she said ‘I think it’s a very good idea.

The only thing that changed in the course of that interview with the solicitor was that whereas she was going to give it to one person he suggested that she gave it jointly and severally to two people, namely my sister and myself because then we could operate with her but without each other if it, if necessary and it wasn’t, if one of us was away abroad or, there was still somebody else. And it was deferred or as it was called Enduring Power of Attorney.

You don’t have any real power to, to make the person do what they don’t want to do. You don’t have any right over the person at all but you can sign cheques for them to pay bills that they’ve agreed to pay. It’s a big ethical issue involved in this, yes. [OK yeah.]

How did you feel about the Power of Attorney and the responsibilities that come with this?

We were led very clearly by her solicitor, my mother’s solicitor who was, very clear and very good at telling us what our roles and responsibilities were and we took the view that he was acting in her best interests anyway, because he was her solicitor and should have been, but he was. And we had confidence in him and she had confidence in him and he told us what we could and could not do with this power. And in practice we did very little with it at all until she came to move and then it meant that I could deal with things at this end and my sister could deal with things at that end and both of us could sign the legal papers and my mother really didn’t have to sign anything at all. Although some things she did sign, I mean where she could, she did.

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The other legal course is to apply for the persons affairs to be transferred to the Court of Protection. This has to be considered when the person involved is unwilling to give Power of Attorney to any family member or other person. In this case the person who feels that it is necessary will have to prove this by providing evidence of financial incompetence. Several carers complained that the process took many months, during which time finances had a chance to reach rock bottom. They also felt that it was unfair that the court took a considerable fee but did nothing to help organise the affairs they had charge of. One man complained that he was not allowed to draw on his wife’s savings to pay for her residential care until her case was accepted by the court of protection which took one year.

Believes the medical profession has some obligation towards those they cared for but in reality sees little of this.

Gender Male

Age at diagnosis 69

Actually it’s, not only, not Power of Attorney only it’s Court of Protection. I left it too long to get Power of Attorney and the solicitor couldt agree that she could sign her name properly. So I had to get, the thing dealt with by the Court of Protection, which took, which took a year instead of a month. There terribly, oh it’s, they, a lot of blue, an awful lot of red tape with them.

However, m, m empowered to wind up her estate and put the money into a new account. And I can actually pay the bills for [my wife] from our own finances rather than mine which brings quite a lot of paperwork into it but it does mean that in the end with her, when her finances are down to £18000 the Council will have to put their hands in their pocket to pay the fees which are pretty exorbitant.

About £3000 a year, no, m sorry. There £600 a week, thas 32, 33000 and the Council will have to put their hands in their pocket for some of that quite soon if, if our capital falls below 18000. it’s going to take a little while. In the meantime I pay it all.

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The worries caused by the uncertainty of financial arrangements can have a serious effect on the carers ability to do their job effectively. As one carer explained he felt guilty having to spend so much of his time worrying about his mother’s finances when he should have been concerning himself with her other needs. He describes the process of Receivership by the Court of Protection and repeats the advice to organise Power of Attorney early on and avoid this hassle.

Describes setting up a Receivership Order with the Public Guardianship Office.

Gender Male

Age at diagnosis 65

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There are several options, if the person is, is still cognisant enough to be able to sign over the running of their financial affairs to a carer they can sign a Power of Attorney which is a lot easier and avoids a lot of, of hassle really. At the time my mum was diagnosed she really wasn’t, she really wasn’t able to do that and so I had to apply for what’s called a Receivership Order to the Public Guardianship Office. And this basically allows you to take over the financial running of your relatives affairs with appropriate reports and, from the psycho geriatrician and the psychiatric nurse or references from other relatives to say that you’re a responsible person who, who would do that.

But that takes, that’s taken somewhere around eight months. I got the Receivership Order a couple of weeks ago and in fact now I’ve got it it’s made things more difficult because I’ve spent the last two weeks closing down bank accounts, shifting money around and in fact all the money has been lodged with the Court rather than with me. So now I have to apply to the bank to pay a monthly mandate to pay her care home fees and I just have the anticipation that that’s going to take a long time as well so in the meantime I have to continue paying for her.

So everything takes a long time and they’re not very efficient I’ve found. Things have been sent off to them and then a couple of months later despite numerous phone calls they haven’t done anything and then they turn round and say they’ve lost it so you have to send it all again. And it’s been a long drawn out and frustrating process. Given that I am trying to do the best for her and I’m not about to run away on the proceeds it’s just, it’s, I can understand the need for legal checks and guards against dealing with, dealing with your relatives assets. But it does seem to be a very drawn out process.

So my personal recommendation would be, if at all possible, to get people early, in the stages of the disease when they still know what they’re doing to some extent, to, to sign a Power of Attorney, that makes things a lot easier and cheaper.

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Some carers admitted making changes to their wills, fearing that if they died first, all their savings would be spent on residential care for their partner and none of it would be left to pass on the rest of their family.

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