Cognitive symptoms of Huntington’s are affecting my brother’s finances

Huntington's disease affects the ability to plan and organize

Becky Field avatar

by Becky Field |

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“The waste of money cures itself, for soon there is no more waste.” – M.W. Harrison

The cognitive damage caused by Huntington’s disease has strongly affected my brother, Gavin. It’s part of the reason he is unable to manage his financial affairs on his own. We saw the effects of this begin a decade before his motor symptoms were visible. These difficulties grew steadily worse over time.

Huntington’s disease took the lives of our dad, grandfather, and great-grandmother. It affects the ability to plan and organize, causes rigidity in thought patterns, and makes it difficult for the sufferer to learn new things. People with Huntington’s suffer from compulsions and repetitive behaviors that are linked to obsessive thoughts. They can become impulsive. It is harder for them to process information, and they can lack insight, meaning that they are unaware of their symptoms. All of these cognitive symptoms appear to have had a profound effect on my brother’s ability to stay out of debt.

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A court steps in

Gavin has a tendency to spend more money than comes into his account each month without understanding the consequences. He doesn’t appear to keep track of his spending, know how much his purchases add up to, or leave money in his budget for bills. He gives large amounts of money away and spends compulsively, yet is without much needed essentials like food, clothing, shoes, and furniture.

Recently, the Court of Protection team at our National Health Service Foundation Trust has stepped in to try to keep Gavin safe from financial abuse and to prevent him from overspending. This follows an assessment by a social worker who concluded that Gavin has lost the capacity to manage his finances. This is an interim measure until an application to the court is finalized and a court order obtained for them to become a legal deputy for his finances.

They have opened two accounts for Gavin. One is for his disability benefits to be paid into, from which his bills will be paid. The other has a prepaid card for Gavin’s personal use. A weekly allowance is paid into it every Monday from the main account. The hope is that this will keep his money safe. It also means Gavin still has some freedom with his own money.

Unfortunately, during the first couple weeks, Gavin withdrew and spent the entire allowance in the first few days. He is struggling to learn how to use the new account and is confused and angry that he is being restricted with his money in such a way. He wants an unlimited budget with full access to all of his money. He is frustrated that he can’t check his balance online or use the account in the same way that he used his old one. The change is causing him a great deal of stress and anxiety.

I receive text messages from him on a daily basis. He doesn’t understand why he can’t have full control of his money. “I’m only 45,” he argues. He’s actually 44 but has been adding an extra year to his age for a while now. He asks me questions about his bank account that I don’t know the answers to, but he won’t accept it and keeps sending more messages.

A meeting is being called next week to look at his weekly allowance to decide on the best way to proceed, given the problems he has been experiencing.

It has been physically and emotionally exhausting for my mum and me. I have watched Gavin lose his driver’s license to Huntington’s disease, and now he has lost most of the control over his own finances.

I know there was no choice and we had to make these decisions to keep him and others safe. But it is so sad to watch parts of his life gradually slipping away.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.


David McDonagh avatar

David McDonagh

My brother had the same problem before we knew about HD. He was in a community home and fancied a girl in there. Between them they spent a fortune buying different things on his credit card, even a wedding dress yet they weren’t getting married. He had absolutely no idea about money but spent hours every day counting the same number of coins he kept in his bedroom. It cost my wife and I a lot of money to clear his debts.

Becky Field avatar

Becky Field

Hi David, problems with money management do seem to be a common issue in patients with Huntington's disease. It has cost our family money too, to clear the debts of others.

Rose Marie Higgins avatar

Rose Marie Higgins

My 55 year old son was ordering things from Amazon. I was shocked when a new mattress was delivered!

Becky Field avatar

Becky Field

Oh my, Rose Marie, it must be a big shock when large unexpected items turn up!


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