Legal Planning for Dementia: Essential Steps and Advice.

There are not many diseases or conditions for which you need to have a legal or financial plan.  Dementia is one.  You need a financial plan because unlike other conditions, most of dementia care falls as a financial burden on the person.  You need a legal plan because someone needs to make decisions after you are unable to decide for yourself.

The reason for this is that a person with dementia will gradually lose cognitive capacity.  This means they find it difficult to make decisions.  To make a decision you need to understand the information that is given to you about it.  For example, a daughter says, “Dad, we need to sell your house in order to pay for your care.”  If the father has dementia, he might not understand what it means to sell the house.  He might say, “OK, sell it but I’m going to still live there.”  So how can he make a decision on that?  He doesn’t understand the implication of selling.

Another thing he needs is to retain the information long enough to be able to make a decision.  So, the daughter explains that he owns a house, and he remembers that.  He says he wants to keep living in it.  She explains that if they sell it, he’ll have to live in another place.  She says we need some money to pay for care and asks if he agrees to the decision.   He then says, “I’ll still live in it, won’t I?” He can’t remember the start of the conversation, so he can’t truly be said to make a decision. He’s not retaining any information.

Even if her dad does seem to understand and retain the information he needs, he might start to lack judgement as a result of dementia. If he can’t weigh up the information, and just says, “Whatever, it’s too much for me to think about,” the daughter doesn’t have permission to act.  He’s just dropped out, not made a decision.  He also needs to be able to communicate his decision. She is his “next of kin” as an adult daughter, and closest family member, but that makes no difference.

What would have helped with that?  If they had planned in advance the father might have granted his daughter power of attorney while he was still able to make decisions.  In that case the daughter would try to help him make a decision, and if he couldn’t, she would have the power to make it for him. She is still required to try to do what he would have wanted, for example, delaying the house sale as long as possible because that’s what he repeatedly urged her to do while he was still able to make sound decisions. There is more about granting powers of attorney here.

When should you make this legal plan? To be honest, it is never too soon. Having someone with that power of attorney for you will certainly help if you get dementia, a long time from now.  But even in the meantime there might be times, for example if you had an accident that rendered you temporarily unconscious, when it would be good if there was someone there who could make decisions for you.  Remember to review it from time to time to make sure it still says what you would want. You might even ask your “next of kin” to be your attorney, but it’s wise to choose a younger one who is likely to outlive you.

Do you still need it if you have a loving family around you?  Indeed you do!  The idea that your “next of kin” can give permission for you or do things on your behalf without having a power of attorney is confusing.  Of course, if the staff in the care home ask the daughter what food he prefers, or which is his favourite shirt, she can give information that helps the staff decide how to dress him or what to offer for breakfast.  If they wanted to send him to hospital for tests or lock him in his room for his own safety, checking it out with the daughter gives them no more power to do that, than if they checked with his window cleaner. Legal and health decisions that require consent and capacity cannot be taken by next of kin unless they have this legal power. 

In an emergency health staff have the power to make decisions if the person is seriously ill and unable to communicate, and it makes sense for them to ask next of kin about what the person would have wanted, but that’s not the same as the spouse or adult children making a decision.  As part of your own planning for later life, make sure that you’ve clarified this and don’t leave a mess to be cleared up after. It might not produce a result that you would have wanted.