The ALLIANCE has produced a report for the Scottish Parliament’s Cross-party Group on Deafness on dementia assessments and sensory care

A working group of the Cross-party Group on Deafness aims to improve care pathways and support for people with dementia who also experience Deafness, Deafblindness or Visual Impairment, including BSL users. This working group, also supported by the Cross-party Group on Visual Impairment, is developing the first framework of sensory care standards for Scotland.

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The framework of sensory care standards will centre around several core areas, one of which will be sensory assessment.

Identifying Deafness, Deafblindness or Visual Impairment before people are assessment for dementia is important, because it enables tailored communication which meets people’s needs. This fosters informed decision making and independence.  It also enables GPs and other health and medical professionals to select different memory/dementia assessment tools – rather than using standard tools that require people to see and hear.

Not identifying or considering Deafness, Deafblindness or Visual Impairment means that assessments and support planning are unlikely to be appropriately tailored to the needs and rights of individuals. 

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The working group wanted to know if or how sensory assessments feature as part of any dementia assessment pathway in Scotland, or during post-diagnostic support. We explored the practices of health and medical professionals who carry out memory/dementia assessments for people who are Deaf, Deafblind or who have a Visual Impairment, including BSL users, and the eye and hearing care specialists who assess sight and hearing.

From August to October 2024 the ALLIANCE collected responses to four online surveys, each one targeted at a specific group of health and medical professionals in Scotland.

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The major findings from this research are that there are large variations in practice in the assessment of dementia for people with Deafness, Deafblindness and Visual Impairment, including BSL users. There is also a lack of integrated care pathways between dementia assessments performed by GPs and other health and medical professionals, and sensory assessments from eye and hearing care services.

Our findings include:

• Only 6% of GPs and 12% of other health and medical professionals specified that they would assess both sight and hearing as an integrated part of assessing memory/dementia. Methods used to assess dementia risked missing Deafness, Deafblindness or Visual Impairment.

• GPs and other Health and Medical Professionals were largely unaware of memory/dementia assessments specifically design for people who are Deaf, Deafblind or have a Visual Impairment, and this included assessments for BSL users.

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A respondent who is also a professional with lived experience of supporting a relative with Deafness and now advanced dementia through diagnosis and post-diagnostic support, stated that if appropriate assessment tools had been used much earlier in the process, poor outcomes could have been avoided: 

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“Provision is drastically lacking for deaf/blind dementia patients […] deafblind manual [users] are not considered – the hearing community typically thinks that it’s all the same language.” 

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Based on the research findings, the ALLIANCE has published a report for the Cross-party Group on Deafness containing 26 recommendations to improve care pathways and support for people with dementia who also experience Deafness, Deafblindness or Visual Impairment, including BSL users.

These recommendations will inform future work by the sensory care and dementia working group on developing the first framework of sensory care standards for Scotland.

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A BSL video of the executive summary report, with captions, is available below: