When “Dementia the One Stop Guide” came out, I was delighted to hear from Gordon Ashton OBE that he thought the book was good – but that the legal chapter could be filled out a bit. That’s a great way for a man to volunteer for work!
Gordon was a District Judge for over twenty years until recently and has been recognized for his work concerning older and disabled people. So it is with great pleasure that I present, here on the website, his additional material for chapter 13 of “Dementia the One Stop Guide.”
If you haven’t got a copy of the book you can buy it here, or click on the button on the left hand side.
Gordon writes and lectures on topics concerned with older people and people with disability and the law.
He be contacted about talks at email@example.com
Some important legal issues
We all make our own decisions in life, whether these are about our financial affairs, personal welfare or health care. We are entitled to do so, although we may be influenced by others and on occasions may even allow another person to make some decisions for us. That is all part of family life and personal relationships, and is acceptable as long as we remain in control, but any influence must not be ‘undue’. Dementia may render us more vulnerable to influence by others and we then need to be protected against this. The courts can cancel or ‘set aside’ contracts that we have entered into as a result of ‘undue influence’ if they are not in our interests.
A court can also set aside a transaction where one party lacked capacity to enter into it and the other party was, or should have been, aware of this. (In Scotland the other party does not even need to be aware of the lack of capacity). There are specific tests as to capacity to do certain acts, such as signing a Will or a power of attorney, making a gift or getting married. If in doubt competent legal advice should be obtained from a solicitor who will know what medical or other evidence to obtain. Where the act may later be challenged, for example a Will by a dissatisfied family member, it is important to have reliable evidence as to testamentary capacity at the time it was signed.
Where dementia deprives us of the mental capacity to make some or all of our necessary decisions there needs to be a procedure for these decisions to be made for us. Legislation makes provision for delegated decision-making in these circumstances: in England & Wales this is the Mental Capacity Act 2005 and in Scotland the Adults with Incapacity (Scotland) Act 2000, both supported by helpful Codes of Practice. The terminology and procedures in each country are different but both seek to achieve the same outcomes. This legislation and the Codes may be found on the Internet for those who wish to go into this in more depth and other guidance is available (see list at the end of this Chapter). Legislation is now being enacted in Northern Ireland and the Republic of Ireland. The rest of this Chapter is an outline of what this means to people with dementia and their family and carers.
Put your affairs in order
Anyone diagnosed with some form of dementia should take steps to put their affairs in order whilst they can. This may include simplifying their financial affairs, signing a Will and completing (if desired) the documents mentioned below. Choosing someone to make decisions for us in the event that we lack capacity at some time in the future is one of the privileges now afforded to us.
I’m in my fifties with no sign of a stroke or dementia or anything and no one in my family had any of that so I’m not worried. But I have had a number of conversations with my daughter over the years, right from when she was quite young. She’d sometimes say, ‘That’s enough …’ and walk away, apparently bored, but in fact I’ve discovered she was retaining it all. Now she has hit the legal age, we’ve got the power of attorney sorted so, if or when something happens to me, she can take over. I’ve told her that if I’m in a home and don’t know her any more she doesn’t need to be sad, but just check them out regularly to make sure they are doing the right thing. I know and love her now enough for all my life and the life to come. What might happen after dementia does not matter to me. (Fatma, 56)
Practical suggestions about money
If a bank becomes aware that an account holder has lost mental capacity it will freeze the account until someone is legally authorised to sign on their behalf. Doing the following while you still have capacity might make life easier for a while:
- set up direct debits and standing orders so that bills get paid regularly without you having to handle them;
- consider a joint bank account with a trusted person so that they can access your money in the account.
While you are unwell or in hospital you could say to them, ‘Send a cheque for £25 from our joint account to Doris for her birthday,’ and it would be done. Or you could say, ‘When you are in town, will you get me out some cash from the ATM?’ and they can just do that and bring it to you.
- complete a third-party mandate. This is an instruction to your bank or building society to provide access to your account for another person. (If you lose capacity the mandate is terminated, so it’s not useful for dementia in the later stages).
- if you have a Post Office card account for benefit payments you can apply for another person to have their own card and PIN number so that they can withdraw cash.
An Appointee may be nominated by the Department of Work and Pensions (DWP) to receive state benefits on behalf of a person who lacks capacity to handle their weekly income.
Who lacks capacity?
There can be no interference with our decisions if we have the capacity to make them, so the first step must be to determine whether the person lacks capacity to make a particular decision or range of decisions at the time these need to be made. All practicable steps must be taken to support a person with dementia in making decisions and they should be allowed to make eccentric or unwise decisions – it may be undue influence to interfere. If there is no urgency it may be appropriate to wait for a while in case there is capacity to make the decision at a later time – for some people there are good and bad times during the day.
If you ask my mum anything in the afternoon she always says, ‘NO!’ and I’m pretty sure she has no idea what is being suggested. Yet, the next morning, and every morning, she’ll enter into a sensible conversation about the same thing. (Eleanor, talking about her mother, Jane, 80)
The legal test of capacity
Basically the law is concerned with whether the person can:
- understand information;
- retain the relevant information;
- use or weigh the information in making a choice; and
- communicate his or her decision.
We are all presumed to have capacity and no assumptions should be made based upon the person’s age, appearance or medical diagnosis. A person who no longer has the capacity to understand a complex issue like managing a share portfolio or selling a house might still be capable of deciding what to wear, what to eat and where to go on holiday. So capacity is not an ‘all or nothing’ issue.
If it is concluded that there is a lack of capacity to make a decision or range of decisions (the functional test) and this is due to ‘an impairment of, or a disturbance in the functioning of, the mind or brain’ then the statutory procedures for delegated decision-making can apply. In Scotland this requirement is replaced by the existence of a ‘mental disorder’. These requirements (known as the diagnostic test) are intended to prevent delegated decisions being imposed on a person simply because they are eccentric or for some other inappropriate reason.
On what basis can delegated decisions be made?
In England & Wales delegated decisions are made on a ‘best interests’ basis. There is no definition of this but all relevant circumstances are taken into account and a check-list must be applied. This includes:
- the person’s past and present wishes and feelings;
- the beliefs and values that would be likely to influence the person;
- the views of those who should be consulted (eg. family, friends and carers).
This is a person-centred approach rather than what the decision-maker thinks is best, and it follows that the person must be encouraged to participate. There is always a difficult balance to be struck between empowering and protecting the person and seldom can you do both at the same time – protecting a person usually involves depriving them of their autonomy. The least restrictive option should be chosen and this may mean not making a decision at all, at that time!
In Scotland this ‘best interests’ principle does not apply but: ‘There shall be no intervention in the affairs of an adult unless the person responsible for authorising or effecting the intervention is satisfied that the intervention will benefit the adult and that such benefit cannot reasonably be achieved without the intervention’.
Deprivation of the liberty
In order to comply with the European Convention on Human Rights any care arrangements that deprive individuals of their liberty require a system of authorisation prescribed by law if they lack capacity to consent to this (known as the Bournewood gap). This will be quite common for those with dementia whose freedom should not be restricted prematurely for the convenience of their carers. For England & Wales the Government introduced Deprivation of Liberty Safeguards (commonly known as ‘DoLS’) for those in hospitals and care homes. It is a bureaucratic procedure involving reports by several officials before authorisation is given. Any other deprivation of liberty must be authorised by the Court of Protection, but probably only if there is state involvement.
Clearly there are dangers if a person can be detained in a hospital or care home on the grounds that they lack capacity especially if there is no-one able and willing to challenge this detention, but the Safeguards are merely a distraction for those who inevitably need intensive care and supervision in their best interests. They are designed to reassure society and lawyers that personal human rights have not been infringed whilst failing to ensure that suitable care provision has indeed been achieved. Scarce resources that should be directed towards better care provision are being diverted into justification for that care. The Law Commission for England & Wales is presently considering what better safeguards can be introduced (see website below).
The vexed question is sometimes who decides.
The lawyer would not let George change his Will because he wasn’t sure if he had the mental capacity, and she said we needed to ask the doctor. The doctor said that wasn’t a clinical decision – it was a legal one. George was stuck in the middle. (Wife, 71)
In this situation the lawyer was right to consult the doctor and the doctor was right to say that it was a legal decision but the doctor was still capable, after being advised of the specific legal test, of expressing an opinion that the lawyer should take into account along with all other available evidence in deciding whether there was capacity to make a Will.
In everyday matters it is usually the family member, carer or other professional called upon to make a decision who should assess capacity and then, if it is lacking, decide what is in the person’s best interest. Ideally the person with dementia will already have appointed someone to make decisions (see below) but some decisions, such as serious medical treatment, may require a decision of the Court.
What is the statutory scheme?
The statutory schemes are for decisions to be made at the lowest appropriate level. In England & Wales these are as follows:
- when we have capacity we can complete a power of attorney appointing someone of our choice to make decisions for us in the event that we lose capacity (see below);
- we can also at that stage make advance decisions about medical treatment (see below);
- decisions on welfare and basic health care can be made by carers or professionals who reasonably believe that the person lacks capacity and that the decisions are in that person’s best interests;
- a judge of the Court of Protection can make declarations or decisions for a person who lacks capacity;
- the Court of Protection can appoint someone (called a Deputy) to make a specified range of decisions.
A similar approach applies in Scotland but there is no Court of Protection and a Sheriff Court deals with these matters.
The legal position
Medical treatment may not be given to us without our consent, but if we can’t speak for ourselves (such as after an accident or due to dementia) doctors and nurses have a legal obligation to act in our best interests. Whilst next of kin may be consulted they do not have power to give consent. In an emergency the treating doctor will decide what treatment to give and asks questions later. We can express our wishes or decisions about treatment in advance when we have capacity and if there is evidence of our choices they must be taken into account.
Any decision about treatment that is set out in a signed document and relevant to the circumstances must be followed. Of course we cannot demand any particular treatment but if we state that we do not want treatment this must be respected. These documents have become more popular and are known as advance decisions (sometimes referred to as living wills, advance statements or advance directives). They were given statutory recognition in the Mental Capacity Act 2005 for England & Wales, and although not mentioned in the Scottish legislation the principles are probably the same.
What do you wish to achieve by creating a document?
Some people worry that they may be kept alive by medical intervention when the quality of their life cannot be preserved (eg. after a diagnosis of dementia). You cannot demand assisted suicide or euthanasia, but you can ask for nature to be allowed to take its course while you are given tender loving care. An advance decision that you want to refuse ‘life-sustaining’ treatment like artificial nutrition or hydration even if your life is at risk has to be in writing, signed by you and witnessed. An example is a Jehovah’s Witness who will say in advance that they must not be given a blood transfusion even if the doctor thinks it will save their life.
The options include:
- an advance decision that refuses specific treatments, like resuscitation from a heart attack or treatment for cancer;
- a more generalised statement that says ‘no life-sustaining treatments if I’ve got no chance of getting better’;
- (for those with dementia) a refusal of life-sustaining treatment ‘if I am persistently unaware of my surroundings or unable to recognise people close to me’;
- a request to ‘give me everything that is available at the time’;
- a statement of values, not just about clinical care and treatment but about what life means to you – for example, ‘life in a dependent state when I don’t know my relatives is of no value to me’;
- a statement of who should be consulted (a person to whom you’ve given a welfare power of attorney can make decisions – see below).
What to do with the document?
If you wish to express your wishes about future medical care in this way it is wise to have a discussion with your GP who can record your wishes and provide guidance as to the contents of any document that you decide to complete. You may choose to leave this with your medical records at the surgery but also to provide copies for family or friends to ensure that it is produced when needed – often a crisis arises in a hospital where you may not be known. Some people carry a copy with them. The last thing you want is for everyone to have done their best only to discover your advance refusal the next day while you are vegetating in intensive care after an aggressive and relatively unsuccessful attempt to resuscitate you.
Ensure that your document is up to date
A document signed many years previously may have less value. If you prepare the document when you are young your views about old age and infirmity may have changed by the time you reach that stage. If several copies have been distributed it may not be easy to call them back and destroy them, so it is useful to include a statement that a specified person will be aware of your latest wishes. To facilitate urgent enquiry state the mobile phone number and email address of that person.
An example might be a decision that, if you have dementia and subsequently develop cancer, you don’t want it to be treated but want to be kept comfortable and die naturally. Decisions like this should be reviewed at intervals because a cure may be found for a condition that you once feared. A person with dementia might get pneumonia which used to be called ‘the old man’s friend’ because people died of it peacefully in their sleep. Now that we can treat pneumonia intensively you are less likely to die from it. But you could choose in advance to say you don’t want aggressive treatments.
Power of Attorney
An ordinary power of attorney is a document whereby you appoint someone to handle your financial affairs. It no longer works if you lose capacity so is of limited value if you face a future with dementia. In response to the need for a procedure of choice and to avoid an excessive number of applications to the Court, new forms have been introduced that survive subsequent incapacity.
Powers of attorney that survive incapacity
In England & Wales there are two types:
- Lasting power of attorney (‘LPA’) for financial affairs;
- Lasting power of attorney (‘LPA’) for personal welfare (including health care) decisions;
An Enduring power of attorney (‘EPA’) signed before October 2007 can still be registered and used for financial affairs but no new ones can be created.
In Scotland there are Continuing powers of attorney (‘CPA’) for financial affairs and Welfare powers of attorney (‘WPA’) for welfare.
Contents of powers of attorney
More than one person may be appointed and in that event their powers may be either joint or joint and several. Any of these powers may be restricted so that they only apply after you have lost capacity to make the decisions, but that would be the position anyway for welfare decisions. The welfare LPA may authorise decisions about medical treatment and that would be an alternative to an advance decision.
We should all consider completing one of these powers for financial affairs because the alternative would be an expensive and time-consuming application to a Court for someone to be appointed to handle our financial affairs (see below). Welfare powers are a matter of personal choice.
We are a family of four children and our parents wanted everyone to be involved, so my brother and I are joint welfare attorneys and my older brother and sister are joint property and finance. This increases the chance of there being someone nearby who can sort problems. We signed all the paperwork at a great lunch party at my brother’s house, and my mother immediately said, ‘Thank goodness for that. Now will you make me go on a cruise, please?’ I said I’d love to but as the welfare powers don’t kick in until she has lost capacity she has to make that decision for herself! (Daughter of Frank and Catherine, 82)
Creating a power of attorney
You may be wise to use a solicitor especially if your family does not get on, but you can download the forms on the Internet and complete them yourself. They have to be registered at the Office of the Public Guardian – there is one for England & Wales, and one for Scotland. Age UK, the Alzheimer’s Society and Alzheimer Scotland all have useful information on their websites. It is important to appoint someone you really trust to make the decisions that you would wish in the circumstances, although you cannot always anticipate what these may be.
Applications to a Court
If your financial affairs need to be managed by someone else and you have not completed a suitable power of attorney an application will have to be made to the Court of Protection in England & Wales or a Sheriff Court in Scotland. Fees are payable quite apart from the fact that you may feel it necessary to instruct a solicitor with experience of these matters. So it is best to anticipate a prospective lack of capacity by completing appropriate documents. Those Courts also deal with any dispute or uncertainty as to decisions that need to be made or who should make them. They may make decisions for a person who lacks capacity (generally for personal welfare) or give someone power to do so (which is usual for financial affairs). This would be a Deputy in England & Wales, usually a close family member or professional person.
Some useful Websites
ENGLAND & WALES
Mental Capacity Act 2005
Code of Practice
Lasting Power of Attorney
Office of the Public Guardian
Law Commission: Deprivation of Liberty
Adults with Incapacity (Scotland) Act 2000
Code of Practice
Office of the Public Guardian
Contributed by Gordon R. Ashton OBE, retired judge of the Court of Protection.