Dual Sensory Loss and Dementia – data, definition, and service provision.

• Written by: Dr Nils Koesters — Datafakts — Doctor of Philosophy
• Published: 23rd June 2022

Research on dual sensory loss (or deafblindness) and dementia has been gathering pace at both local and national levels.

Over the last three years, Andrena McMenemy of Datafakts Ltd, Dr Christine Johnson of Queen Margaret University (QMU) and I (Dr Nils Koesters) have been looking at the prevalence of deafness and dementia in Scotland.

Research on dual sensory loss (or deafblindness) and dementia has been gathering pace at both local and national levels. The first international study on the topic specifically sought the views of health care professionals on the effectiveness of the care provided for older people with sensory loss. In 2021, the ‘International Practice Recommendations for the Recognition and Management of Hearing and Vision Impairment in People with Dementia’ was published. These are the first set of international recommendations to be produced and are a welcome step forward. However, there still needs to be greater awareness of how dual sensory loss affects people with dementia so that health and social care services and community support services can be accessible and meet the needs of people with dementia and dual sensory loss.

The need for practitioners to communicate across disciplines has been recognised, and it is hoped that this can be a starting point for collecting and sharing relevant data appropriately and effectively. The goal at the international level is to ensure ‘patient-centred’ services that meet the needs of the individual. For this reason, it was evident that it was essential to establish a knowledge of the number of people living with dementia and dual sensory loss in Scotland.

Our current research was supported by a collaboration of organisations working with individuals living with dual sensory loss: The Scottish Sensory Hub at the Health and Social Care Alliance Scotland (the ALLIANCE); Deafblind Scotland; Sight Scotland; Sense Scotland, and the Royal National Institute for Deaf People (RNID).

It was no surprise that when trying to establish prevalence for those with dual sensory loss and dementia, we found the same lack of available data as in our previous research on hearing loss. In addition to this, however, dual sensory loss research faces another obstacle to gathering prevalence rates – the lack of consensus on the definition of dual sensory loss itself.

While, as yet, there is no global consensus, the Nordic definition (revised in June 2016) is becoming increasingly accepted. Recently endorsed by the World Health Organisation’s International Classification of Functioning, Disability and Health, it states:

‘Deafblindness is a combined vision and hearing impairment of such severity that it is hard for the impaired senses to compensate for each other. Thus, deafblindness is a distinct disability’ (The Nordic Definition of Deafblindness).

Individuals with sensory loss and dementia and the people who care for them need to be able to access several health and social care services – both specialist and more accessible mainstream services and support. But how can this be done effectively and efficiently if the numbers of these individuals are not known?

Our latest report: ‘Prevalence rates for those with dual sensory loss and dementia in Scotland’, provides robust estimates for the number of people living with dual sensory loss and dementia in Scotland. Separate figures have been calculated for each Local Authority and are broken down into age and gender. Using future population estimates from the National Records Office of Scotland (NRS), it has been possible to project these figures, indicating where future service provision would be needed.

It is hoped the findings can contribute to both national and local planning and ensure the lived experiences of people with dual sensory loss and dementia are at the heart of any change.

Dr Nils Koesters, Datafakts Ltd

Email: drkoesters@datafakts.com

Twitter: @datafakts

Report can be downloaded from here (this link will take you away from our website)

End of page.