Deafness and Dementia in Scotland – putting numbers on the map

Written by: Andrena McMenemy, DataFakts Ltd

Published: 22/07/2020

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Andrena asserts the need for data-led planning in order to meet the communication needs of those affected by both hearing loss and dementia.

In June 2019, with Dr Christine Johnson of Queen Margaret University (QMU), I embarked on a Life Changes Trust-funded research project for deafscotland. My task was two-fold; firstly, a scoping exercise to see if it was possible to obtain the current and future prevalence rates of those with hearing loss and dementia in Scotland and secondly to find out what service provision is currently in place for them. A mere 12 months ago it was not possible to foresee the additional relevance the topic would have.

The current UK-wide COVID-19 lockdown has brought the impact and understanding of social isolation into the mainstream and the devastating effects this isolation has on people with dementia has been openly discussed in the media. Those with hearing loss are at risk of increased social isolation; those with hearing loss and dementia are doubly vulnerable and the limited social interaction during lockdown increases the risk even further.

There is a known association between hearing loss and dementia and it is thought that untreated hearing loss may be a risk factor for cognitive decline. Since 2017, when the Lancet Commission concluded that 35% of dementia could be prevented by modifying 9 risk factors: low education, midlife hearing loss, obesity and hypertension, late-life depression, smoking, physical inactivity, diabetes, and social isolation; hearing loss is now considered to be a modifiable risk factor for dementia. While the link between hearing loss and dementia has been firmly established, and an increasing amount of research on the topic has been done, there was a noticeable gap in studies that were specific to the situation in Scotland.

It is well known that it is difficult to obtain the exact numbers of deaf people in Scotland as figures vary depending upon which source is consulted. This lack of clarity is problematic when it comes to planning for delivery of future services and it is widely recognised that there is a need to establish better reporting procedures in order to capture relevant statistics. Perhaps it would come as no surprise that the same issues were encountered when trying to gain numbers for those with hearing loss and dementia. In terms of deafness and dementia prevalence in Scotland, there is no central data collection point.

The data held by GPs is not as yet accessible by Audiology Services. However, it has been possible to model estimates and project these into future prevalence rates for each of the 32 Local Authorities in Scotland. Discussion groups within the study have highlighted that there are differences in access to hearing care services across Scotland. People who experience both dementia and hearing loss find communication to be challenging. Service providers need to be able to plan for the future in order to meet the communication needs of those affected by both hearing loss and dementia.

Gaps in data recording ultimately result in under-reporting and inevitable gaps in service provision for individuals with hearing loss and dementia. The COVID-19 lockdown has resulted in growing awareness of the isolation lack of interaction can bring. It is important to build upon the impetus for action this growing awareness has encouraged and ensure that providers are armed with the cohesive data required to provide optimum service levels now and in the future.

The ‘Deafness and Dementia: Predicting the Future for Scotland’ report was published on 17 July 2020 and can be found on the deafscotland website (this link will take you away from our website).

A summary of the report is also available in BSL, including subtitles and voiceover on YouTube (this link will take you away from our website).

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