Dementia, Capacity and the Benefit of the Doubt

Short term memory loss is an early sign of Alzheimer’s and other forms of dementia which over time can lead to confusion, loss of inhibitions, paranoia, and personality changes. Family members are often disturbed by these changes, especially when their family member does not acknowledge these changes and will not accept more help. Therefore, they might request a capacity assessment to determine wither their loved one truly has the capacity to make decisions for themselves.

The important point to understand about capacity is that there are different forms of capacity and different tests for capacity. Within a hospital, for example, the attending physician assesses the capacity for a patient to make specific decisions concerning their health care. This assessment is not for making financial decisions, which is a much more in-depth assessment, made by a formal capacity assessor and can be done in the community.  In order to determine whether an individual has the mental ability to consent to or refuse long-term-care, a separate capacity assessment is conducted by a care coordinator from the Local Health Integration Network.

Individuals can temporarily lack capacity due to certain conditions such as delirium, a urinary tract infection, being intoxicated, not taking their medications, etc.

Capacity is always assumed. If we are unsure whether a person has capacity, the default position is that they have capacity. Capacity is rarely all or nothing, as individuals might have fluctuating capacity due to their dementia or other health conditions. Also, individuals can temporarily lack capacity due to certain conditions such as delirium, a urinary tract infection, being intoxicated, not taking their medications, etc.

As capacity is assumed, it is up to the healthcare professional to prove that the patient does not have capacity, not vice versa. It is analogous to the law in that individuals are innocent until proven guilty, not the other way around.  The reason for the automatic assumption of capacity is due to the utmost seriousness of being declared incapable.  When we declare someone incapable, we are taking away their rights to make their own decisions, which, even when it is in their best interests, is incredibly harmful to their sense of autonomy, independence, and dignity and can cause considerable mental and emotional trauma.

Some caregivers might wonder why individuals with dementia might be assessed for decisional capacity early in the day versus later in the day, especially when the individual might be more confused later in the day. The reason for this is to give the individual the opportunity to be at their best when they are assessed. This should not be surprising or controversial as we do this all the time in other similar situations.  When we are tired, anxious, stressed, or sick, we realize we are not at our best and that any judgments about our abilities at the time, especially our cognitive abilities, might not truly reflect our abilities. Students, for example, are not expected to take exams at unreasonable times or if they are ill or suffering from a personal tragedy. We don’t set people up to fail, but instead offer them a fighting chance to truly show us what they are capable of.  To continue with the legal analogy, if we grant this basic right to those accused of committing crimes against society to make their strongest case in their defence, how could we not grant this right to our elderly and other cognitively impaired individuals?

Taking away someone’s right to choose is one of the worst things you can do to someone within a free society. Therefore, we must be absolutely certain that the individual is incapable of making decisions for him or herself. When the frail and elderly already have lost so many basic rights and dignities which the rest of us take for granted, should we not be vigilant in ensuring that we don’t take away their right to live on their own and make decisions about their care, which are often the last decisions anyone can make?

photo of ethicist David CampbellDavid Campbell, PhD, is an Ethicist at Kingston Health Sciences Centre

 

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