Intertwined: Dementia and decision making capacity.


This week I have mostly been thinking about decision making capacity.


Decision making capacity is described as the ability to make a  decision. There is little agreement in the research literature on what the specific cognitive components of making a decision are and how to assess these. To date legislation in this area has provided the only real guidance for health and social care professionals in the form of the mental capacity act 2005 and the accompanying code of practice 2007. In summary the mental capacity act explains that a person may only lack capacity if he or she has an impairment of the brain or mind AND has been assessed as unable to understand, recall, remember and express a decision.


This may seem like a major departure from my PhD but it is really intertwined. People with dementia may have difficulties making capacitous decisions. There is a consensus in the research literature  that people with dementia present with progressively less ability in this area as their disease worsens. Yet in the mild to moderate stages they are often able to make decisions. Even in the more severe stages people with dementia may be able to make some decisions if information is presented in a way that they can understand. Understanding is the area where people are most likely to “fail” a capacity assessment. If information is presented visually, using images, context, accessible language and other communication strategies people are often better able to participate. Using these communication strategies is a skill. Speech and language research has demonstrated that communication training can improve the communication of groups of health professionals. Bespoke individualised communication skills training demonstrates improvement in actual conversations. Better conversations with Primary Progressive Aphasia is one such training package.



People with PPA present with a progressive deterioration in communication skills in the presence of otherwise intact cognitive skills. People with PPA are often able to plan, judge and anticipate their future personal and healthcare needs. They may feel anxious and concerned about participating in future decision-making. They might start planning for this future. Supporting people to plan for the future might include developing communication aids that include information about their future decision making. The people around that person may also wish to support them. Supporting people who may end up becoming defacto decision makers (should the person no longer have decision making capacity in relation to a specific decision and have appointed a power of attorney) may include provision of communication training to ensure they are best able to ascertain the persons will and preferences in a specific situation.


So decision making capacity is not a big departure from my work- it is intertwined and integral in the work I do with people with dementia and their families. The forthcoming NICE SCIE guidelines on decision making and mental capacity will provide further support and guidance for us in our daily practice. This is an exciting step – and another part of the conversation.

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