Healthcare Professionals and Supporting decision-making and assessing capacity

Brian has been living in a residential centre for people with intellectual disabilities for a number of years. He was recently diagnosed with early onset dementia. Up until now, he has been able to make his own decisions about his daily life with the support of staff who gave him appropriate information and explained it to him in a way that he could understand. Due to his dementia, Brian has become more confused recently and decisions he could make before with support from staff are becoming increasingly problematic. He does not seem to understand information given to him or explanations of the consequences of decisions he is thinking about making.

The residential centre is closing in the next year and all residents will move out to live in the community. Staff need to discuss this with Brian in order to plan for what accommodation option is most suitable for him based on his expressed will and preferences. However, based on recent communications with him, they are concerned about his capacity to decide about where to live. Staff continue to use all practical means to support Brian to make the decision about where to live, including seeking the assistance of Brian’s sister with whom he is close. They try to establish what his will and preferences are in relation to different accommodations options; support him with his sister to visit these accommodation options; and speak to him when he is most alert. Having exhausted all of these practical means, their concern remains about his capacity to make the decision about where he will live.

As time is pressing on and their concerns remain, the staff decide to assess Brian’s capacity in relation to the decision about where to live. They try explaining to him why an assessment is necessary. Brian gets angry and says that he does not want to be assessed or talk about it. Brian’s key worker is aware Brian is more alert in the morning and is more relaxed outside. She schedules to have a meeting with Brian and his sister in the garden of the residential centre the following week. The key worker explains to Brian why this decision has to be made and reassures him that they want to support him to make his own decision. His sister explains that an assessment of capacity is nothing to be afraid of.

Together with his sister, they use language and terms that he is familiar with and give him plenty of time to take it all in, but Brian remains fearful that the assessment would result in him being put in psychiatric care because he is, in his own words, ‘losing his mind’ due to dementia. After explaining that the assessment is needed to identify the supports to be put in place to help him make a decision about where he might move to, Brian is reassured and agrees to be assessed.

Comment: This vignette demonstrates steps that can be taken when a person declines to have their capacity assessed: explaining the nature and purpose of assessment; involving a trusted family member, friend, or advocate; listening to the person’s concerns; discussing possible outcomes; and providing time, support and reassurance. If the person continues to refuse the assessment, this does not, of itself, indicate lack of capacity