The struggles that come with a patient’s lack of mental capacity

The United Kingdom’s Mental Capacity Act, introduced in 2005, states that a person is unable to make a decision if they cannot do one or more of the following:

• “Understand the information relevant to the decision
• “Retain that information for long enough to make the decision
• “Use or weigh up that information as part of the process of making the decision
• “Communicate their decision in any way.”

Capacity can be difficult to assess; it can fluctuate minute to minute, hour to hour, and day to day. Someone may have the capacity to make one decision, but not another; they may lack the capacity to make complex financial decisions, but may be able to shop by themselves. In short, capacity is complicated.

One of the greatest challenges a family with Huntington’s disease faces is the diminished mental capacity of their loved one. Huntington’s disease causes nerve cell damage to the brain and thus cognitive issues that affect the patient’s ability to understand information, consider it, and make a decision.

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Permission to help

I’ve lost my dad, grandfather, and great-grandmother to Huntington’s disease. I tested negative for it last summer.

Dad was happy to accept our help; he trusted us in the family to do our best to look after him. We arranged for my brother, my mother, and me to be named as his power of attorney, all before his loss of capacity. With that role, we had the legal right to make financial, health, and welfare decisions on his behalf.

This step avoided any stress. Dad’s money was always safe, and we made decisions about his health that were in his best interest, all designed to keep him as well as we could, for as long as we could.

For some, it’s a different story. If power of attorney for financial affairs or health and welfare decisions is not obtained before the patient is deemed to have lost capacity, families are left in a difficult, time-consuming, and stressful position.

Thankfully, with the help of a social worker and the court of protection team at a local National Health Service Foundation Trust, families can seek to have a deputy appointed for finances to protect the patient and keep their money safe.

Unless a family member or someone else has the power of attorney to act for a patient’s health and welfare, patient confidentiality and data protection rules restrict medical receptionists from giving out information. That makes caring for the patient both difficult and stressful.

There comes a point, though, when a legal deputy must be appointed, so that that patients cannot be left to refuse medical appointments when they don’t understand the consequences of obstructing their own care.

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.