Dual sensory impairment describes a combined hearing and vision loss such that one sense cannot compensate for the other. This can occur at any age but is increasingly common in older adults. We will use the abbreviation DSI to refer to this from here on in.
There are many different ways of describing the combination of hearing loss and vision loss. Some examples include deafblindness, dual sensory impairment, dual sensory loss and multisensory impairment. Some people may use variations on the first impairment e.g. blind with hearing loss, or deaf with low vision. For many older people, no term is used, just an acceptance that not seeing too good and not hearing too well must be a ‘normal’ part of ageing. Researchers and professionals may use different terminologies to those actually living with co-occurring hearing and vision loss. This reminds us all to ASK individuals and the disabled people’s organisations that we work with, what their preferred descriptor is.
DSI can present many challenges including:
- Access to information
- Communication difficulties
- Compromised orientation and mobility
- Difficulties in social interactions (as listening and speechreading are impacted)
- Barriers to meaningfully participating in everyday functional activities
- Lack of understanding/knowledge/recognition of DSI within healthcare contexts
- Feeling depressed
- It can be tiring trying to work out what is going on around you
Just over one third of fifty countries surveyed by the World Federation of the Deafblind (2018) recognised deafblindness-dual sensory impairment as a unique and distinct disability. Without such recognition, people living with DSI, their carers and families, and the disabled people’s organisations that serve them don’t have seats at the tables of legislators, policy makers, professionals and practitioners in the field. There is, in Australia, no dedicated DSI support service despite the large numbers of older people affected. We then must rely on those services and institutions for single sensory loss to advocate for us and our complicated access to information, ways of communicating and support for mobility-orientation.
Many in the field of single sensory loss don’t understand how dual sensory impairment means neither sense can compensate for the other. This is hit and miss, and those with DSI are forced to ‘choose’ which is the ‘primary’ disability. Without wider awareness of the distinct disability and its many complexities by structures, researchers, professionals and practitioners, the wider community remains unaware and many living with DSI will suffer its impacts in silence. Lack of recognition also promotes data invisibility as well as keeping the personal experiences hidden from view. Finally, in times of limited budgets, scant data and limited understanding means that the complex needs of the DSI population are not funded adequately, or simply not funded at all. Such a situation of low recognition fosters marginalization of a rapidly growing group of people globally, nationally and locally. This is indeed an ‘invisible epidemic’.
In Australia, old data from Senses Australia in 2013 put the number of Australians living with DSI at 100,000 (5:1000) Australians. More recently, 200,000 people of all age groups are estimated to have a combined full or partial hearing loss with a full or partial vision loss. This equates to a rate of 8:1000 Australians in 2019 living with DSI. This increase reflects the way the population is ageing. We also know that recognition of DSI in First Nations Peoples and those living outside of metropolitan areas , prisoners, the homeless are not captured well in this data.
Older adults with DSI often have other conditions to manage , meaning that they may frequently attend hospital and healthcare appointments . This is a problem when GPs and other health care professionals don’t understand or recognise DSI, and don’t have the tools to communicate effectively . This can be a big challenge to patient safety and shared decision making.
Our challenge is in making DSI visible to the broader public, in health care and to older adults and their families. The Dual Sensory Impairment Project and website is all about developing strategies and options for those with DSI to improve recognition, quality of life and minimise the negative effects on health, wellbeing and social life.