Leeds Beckett University - City Campus,
Woodhouse Lane,
LS1 3HE
Work to understand and develop communications about treatments for dementia that support the best outcomes for those receiving diagnosis.
There are 225,000 new cases of dementia in the UK each year. When people are concerned about having dementia, they attend Memory Assessment services. One of the main reasons people seek a diagnosis is to have access to treatments, such as medications, which are offered to around 70% of people diagnosed. Sometimes people have unrealistic expectations about the treatments, and research shows that people can be reluctant to start a medication once it is prescribed. Discussing treatments can be stressful and complicated because medicines do not cure dementia, they only target symptoms and do not work in the same way for everyone. Describing how effective treatments are, and treatment side effects, involves an element of uncertainty. Currently we do not know how the uncertainty about prescribing and taking medications for dementia is talked about by healthcare professionals in appointments.
In memory assessment services conversations are further complicated because the person with dementia may find it harder to understand and retain information. Sometimes this means they are not involved in the conversation, or professionals over simplify the information which leads to further confusion. It is very important that people are given as much information as possible so that they can make an informed decision about whether to take the medication.
This study aims to understanding how medications are described to people with dementia in memory assessment services, and see how that affects peoples understanding of the treatment and decision making. This will be done through three workstreams (WSs).
Methods
WS1 will examine how medications are talked about appointments, by video recording conversations between medical professionals and people receiving a diagnosis. These will be analysed to understand the focus of conversations. Follow up interviews will be conducted to understand the impact of the appointment on newly diagnosed individuals.
WS2 will use a large survey of older people to understand how presenting information about medications in different ways influences the decisions made about whether people would take these. Vignettes showing example ways of discussing information will be presented. Participants will be asked to rate how well they understand and trust the information, and how likely they would be to take the medication if it was described in this way.
WS3 brings together the findings of WS1 and WS2 in a workshop of people living with dementia and their family members to reach agreement on communication methods that have the best outcomes for people with dementia. This workshop will allow us to provide recommendations for medical professionals delivering diagnosis and individuals receiving a diagnosis.
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