We are pleased to share this article about legal capacity, written by DAI Board member, Emily Tan Tan Ong, from Singapore. For too long, the rights and voices of people with dementia have been ignored, on the basis of lacking capacity. Thank you Emily for speaking up for us.
No decision about me without me
A big issue that comes with a clinical diagnosis of dementia is the decision-making ability of the person. Often care partners and family would take on the responsibility of making decisions for the person living with dementia. While this is done with good intention or to make caregiving easier, it is against the rights of people living with dementia.
Section 3 -(1) of the Mental Capacity Act, sets out the following principles:
(2) A person must be assumed to have capacity unless it is established that he lacks capacity.
(3) A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.
(4) A person is not to be treated as unable to make a decision merely because he makes an unwise decision.
(5) An act done, or a decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.
(6) Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.
[UK MCA 2005, s. 1]
As a person who spends most of her working life supporting learners with Special Educational Needs (SEN), I believed that the assumption of incapacity in dementia is a result of assuming that the inability to decide by people living with dementia is a direct cause of their cognitive impairments. It is like the way society assumed the difficulties faced by disabled people are a direct result of their physical, sensory, or cognitive impairments. The inability to make decisions is thus viewed as residing within the person’s cognitive impairments rather than seen as a mismatch between a person’s impairment and the expectations of their environment (UN Convention on the Rights of Persons with Disabilities [CRPD], 2006).
When the incapacity is conceived as part of the disease process and unfortunate life tragedy that happens to the person, it influences the way care partners and family members deal with the inability of their loved ones in making everyday life decisions including what to eat or what they want to do.
Take, for example, a person with vascular dementia, might not make a good food choice does not mean the person is incapable of making decisions. He or she might not know or remember that a bowl of ‘Bak Chor Mee’ (Minced Pork Noodles) can be unhealthy because it contains 511 calories per bowl, and if the person is not physically active or has mobility issues then it could easily lead to excess calories, resulting in chronic health problems.
Everyone does make unwise food choices, but we do not come in and take away the decision-making from the person. At most, if you are the spouse, you would nag on your partner, or if you are the child, you would advise and educate your elderly parents on eating well. The same mentality should be applied when it comes to supporting people living with dementia in decision-making.
As stated in Section 3.3 of MCA – a person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success. Therefore, it is imperative for care partners, whether informal or paid, to ensure that attitudinal and environmental barriers and communication barriers are removed, and practical steps have been put in place to support decision-making for persons living with dementia.
The attitudinal barriers can be in the form of language (verbal and body language) that carries a subtle or direct message of incompetency and incapacity. Over time it is natural for the person living with dementia to believe that he or she is incapable of making decisions, and thus, give up the right to make the decision that is not caused by their cognitive impairments.
The inability to make decisions can happen when someone living with dementia is not able to have the whole picture of the situation because of communication inaccessibility. Section 5.2 of MCA states – a person is not to be regarded as unable to understand the information relevant to a decision if he is able to understand an explanation of it given to him in a way that is appropriate to his circumstances (using simple language, visual aids or any other means). In such circumstances, the provision of other modes of communication would have enabled the person living with dementia to comprehend and make informed decisions.
A common issue for people living with dementia is working memory where it is difficult to hold given information mentally long enough to use it to make decisions. For instance, if I am in a supermarket where the pricing is stated in print form, I can compare the price between two packets of fish and make a decision. Whereas if I am in a wet market, it is so much harder for me to make an informed decision because I will not remember the pricing verbally said by the fishmonger. But my working memory issues should not penalize me as someone not able to make decisions. This is stated in 5.3 of MCA – the fact that a person is able to retain the information relevant to a decision for a short period only does not prevent him from being regarded as able to make the decision.
Therefore, it cannot be assumed that a person with dementia lacks the mental capacity to make decisions. Many people living with dementia retains the mental capacity to make decisions about their day-to-day welfare such as where to live, what to eat, and what activities they want to engage in. Care partners (informal or paid) and family members should provide the person living with dementia the opportunity to consider the matter in the way he or she understands and make his or her own decision.
By DAI Board member, EmilyTan Tan Ong