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Dementia communication: Advice at odds with evidence?

I am just beginning my PhD research and I am lucky that it features a secondary data set full of video files of people living with dementia interacting with family, friends, professional carers, and healthcare practitioners. One thing I have noticed when watching these videos is that some people change the way they speak to accommodate the person living with dementia. Where accommodations such as speaking slowly or reducing the length of sentences can help in some instances, there are additional and differing considerations that are needed when communicating with a person living with dementia. That is not to say that one approach to all people living with dementia is appropriate, which can be seen in this video.

Why is communication important?

A critical factor causing caregiver burden is breakdowns of communication between the person living with dementia and themselves. There are lots of programmes that have been developed to help improve quality of life for people living with dementia and those who care for them through effective communication, however there is often a lack of knowledge of their existence by care providers and families, suggesting a need for evidence-based programmes to be incorporated into healthcare settings. Information can be sought online, from health organisations such as the NHS and charities such as Dementia UK.

However, it is often the case that this advice is at odds with research findings on effective communication with people living with dementia and that evidence from real life interactions is not incorporated into advice for family carers. For example, see the advice for communicating with people living with dementia taken from various webpages below:

· NHS advice: “speak clearly and slowly, using short sentences”.

· Dementia UK advice: “speaking slowly, clearly and in short sentences”.

· Alzheimer’s Society advice: “go at a slightly slower pace than usual if the person is struggling to follow you”.

While speaking clearly and using short sentences is helpful, speaking slowly is often not. This is because speaking slowly can burden working memory, as the person living with dementia must retain the whole utterance for longer. While Dementia UK does stipulate “communication is complex and the enclosed suggestions may work with some people but not with others”, there is no caveat discussed in the NHS advice. The Alzheimer’s Society advice features the disclaimer that speaking slowly is only helpful if the person is struggling to follow you, and that the pace should only be “slightly” slower, this advice better aligns with research findings.

Research has found carers of people with early-stage and late-stage dementia rated speaking slowly as a helpful strategy. This could be because the carers were following advice from organisations and charities, which is at odds with the research evidence. Other strategies such as speaking loudly were avoided by carers who participated in the research project, and this is justified by the researchers as being due to the possible embarrassment or humiliation that can be caused to the person living with dementia, which can threaten their sense of identity. This demonstrates how carers can manage and mitigate threats to identity through their communication, protecting the person they care for from harm to their sense of self.

What can be done to improve matters?

Within the research literature on communication with people living with dementia, a need has been identified for integration of carer training within health services. Training carers in supportive communication strategies is an approach that has the possibility to reduce carer burden and enhance the quality of life of the person living with dementia and the carer.

When I was searching for information on communication difficulties for people living with different forms of dementia, it was notably harder to find information specifically on vascular and frontotemporal dementia. Information needs to be more available about communication difficulties and approaches for those with forms of dementia outside of Alzheimer’s disease. A practical general guide for communicating with people living with dementia can be found here.

From searching for research literature, I found more discussion of differences across various forms of dementia (see these four links on frontotemporal dementia and vascular dementia). This research does not seem to be trickling down into information aimed at supporting family carers, which is problematic. This could be improved by organisations like the NHS and charities such as Alzheimer’s Society having webpages dedicated to communication strategies and approaches for other forms of dementia and discussion of the range of communication difficulties that people living with a dementia may face.

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