Taking control when the memory fades

As soon as you are diagnosed with dementia, you need to take control of your finances and get legal advice, says John Hearne

WHEN test results confirmed that Dermod was in the early stages of an Alzheimer’s-like condition, Lewy Body Dementia, he was profoundly shocked.

Now, two years on, he is living what he describes as a relatively normal life. “I go to the cinema, I go to the pub, I go to the supermarket, I’m well able to live by myself.” The condition meanwhile, is progressing slowly. “My memory can be bad if I lose concentration, especially if I’m talking to more than one person at a time.”

Eleanor Edmond of the Alzheimer Society of Ireland says that despite the seriousness of Dermod’s condition, the fact that it was caught early, and the fact that he’s facing up to the reality of it has made life much more manageable.

She says that of the 41,700 people in Ireland today who are living with dementia, a very large proportion are never actually diagnosed. As a result, they and their families don’t get access to the support and services they need.

“While getting a diagnosis can be really traumatic and difficult for people,” says Edmond, “it’s something that we’re really keen to push. Access to early diagnosis can help in lots of ways.”

This doesn’t make it easy to accept. Edmond says that denial is a common reaction. “Obviously people are overwhelmed and confused, so having access to good information and support at point of diagnosis is one of the things that we would be campaigning for in any national dementia strategy. Getting diagnosis and getting support at that time is key to improving the trajectory for people.”

Early diagnosis isn’t just about treatment. Those living with dementia will also have to deal with the legal, medical and financial issues that arise as mental capacity deteriorates.

Paul Gilmer is a solicitor with pension consultants ITC Consulting. He says a growing number of families are finding themselves in a financial limbo because an elderly parent is no longer capable of making financial decisions. Moreover, it’s legally impossible for decisions to be taken on their behalf.

“Most people are aware of the importance of having a will,” says Gilmer, “but they tend not to consider what happens in the event of a mentally debilitating illness.” When someone becomes mentally impaired, what usually happens is that the individual’s assets are frozen, and no financial activity is permitted until the person recovers from the illness or disability.

“The only way assets can be unfrozen,” says Gilmer, “is by the time-consuming and potentially expensive process of having the person appointed a ward of court and then going back to the court whenever a decision needs to be made.”

Ireland’s legislation in this area is hopelessly out of date. The Lunacy Regulation (Ireland) Act was passed by William Gladstone’s government when Queen Victoria was on the throne, and it’s this act that continues to determine how the courts view the mentally impaired. In 2007, we were one of the first countries to sign the UN Convention on the Rights of Persons with Disabilities. Today, however, we remain one of the few countries that haven’t been able to ratify the convention because our laws in the area are so antiquated.

Critics say that the legal response to mental impairment is both demeaning and unworkable. Appearing before the Oireachtas Joint Committee on Justice, Defence and Equality earlier this year, Deirdre Carroll, chief executive of Inclusion Ireland said “When a person is made a ward of court they do not just have their money regulated, they have their lives regulated.”

New legislation, says Eleanor Edmond, is due to be published in the coming months. “We’re in a transition stage in Ireland. The new legislation should hopefully give people more options.”

In the meantime, Alzheimer’s advocates say that there is another way of dealing with the issues those living with dementia must face.

Dermod is currently planning for the day when he will no longer be able to look after himself. In particular, he’s putting in place the legal structures that will allow his sons to take the decisions that he can’t take. An Enduring Power of Attorney, or EPA, is a legal instrument executed by a person when they are in good mental health. It allows for the appointment of someone else to take action on their behalf in the event of incapacity.

“I’m choosing it,” says Dermod, “because I know there can be problems if I lose it, if I’m not capable of handling my finances. The alternative is to go to the High Court and become a ward of court and I want to avoid that as much as possible.”

Gilmer agrees this is the best course of action. “Obviously, it is difficult for someone to contemplate that they may ever lose their ability to manage their affairs.

“However, an EPA can ensure that, if this does happen, a person’s financial affairs will be looked after by someone they themselves have chosen and trust.”