Douglas Macfarlane, Alys Wyn Griffiths, Joash Ding, Louis Stokes, Joshua Choma, Ikran Dahir, Clive Ballard, John Dennis, William Henley, Christoph Mueller, Nefyn Williams, Byron Creese
Care home staff and relatives of people with dementia were generally uncertain of the risks of risperidone, and the potential side effects were often not explained adequately. While risperidone continues to be prescribed, efforts to minimise harm are required. Specifically, improved education around the risks of risperidone is needed. Relatives wish to be involved in the decision-making process alongside care staff, and their involvement should be optimised through improved communication. Accessible dementia-specific guidance on monitoring risperidone after prescription should also be developed.
OBJECTIVES: Risperidone is an antipsychotic used to treat behavioural symptoms of dementia such as agitation, which should be used as a last resort. However, it carries a number of severe side effects, including stroke. Prescribing data suggest regular use outside of this guidance. We currently know very little about the first-hand experiences of people involved in prescribing decisions within care homes. This study aimed to understand perceptions around the risks and benefits of risperidone, preferences on how side effect risks are communicated, and how people feel about being able to better predict these risks.
METHODS: Semi-structured interviews and one focus group were conducted with care home residents, relatives, and staff. A focus group was conducted with external healthcare professionals.
RESULTS: Using framework analysis, five main themes were identified: (1) the interplay between the person and their symptoms; (2) balancing voices in decision-making; (3) what happens before prescription?; (4) bringing together information to make the right decision; (5) what happens after prescription?.
CONCLUSIONS: Care home staff and relatives of people with dementia were generally uncertain of the risks of risperidone, and the potential side effects were often not explained adequately. While risperidone continues to be prescribed, efforts to minimise harm are required. Specifically, improved education around the risks of risperidone is needed. Relatives wish to be involved in the decision-making process alongside care staff, and their involvement should be optimised through improved communication. Accessible dementia-specific guidance on monitoring risperidone after prescription should also be developed.