Dementia and sensory loss: Deafness

The Deaf community

A very high proportion of over 70 year olds – seventy-one per cent – have some form of hearing loss (Action on Hearing Loss 2011). The biggest cause of this is age-related damage.

However, there is a significant community of people for whom being Deaf is a lifelong experience and a source of positive identity. Deaf people are severely or profoundly deaf and were either born deaf or lost their hearing very early in life. They use a signed language rather than a spoken language. There are strong bonds between Deaf people and together they form the Deaf community. When the word ‘Deaf’ is used in this sense, it refers to being part of the Deaf community and is deliberately written with a capital ‘D’.

I felt something was wrong. She had lost her smile.

Deaf husband talking about the first hints his Deaf wife might have dementia (from unpublished research from the Deaf with Dementia research project)

In the UK, the main type of sign language used is British Sign Language (BSL). This is not a visual version of English. It has its own grammatical structure and regional variations, in the same way as spoken languages might have accents. Estimates for the number of people who use BSL as their main way of communicating vary enormously – from 22,000 to over 100,000 in the UK (see Action on Hearing Loss and Deaf Cognition and Language Research Centre, 2013; British Deaf Association, 2013).

There are distinct cultural norms associated with sign language use and with being a member of the Deaf community. Deaf culture exists in the same way as, for example, Polish or Bangladeshi culture might. In 2003, the British government formally recognised BSL as an indigenous language of the UK.

You can explore more about the differences between deaf and Deaf people, sign language and Deaf culture by reading the guide Research with d/Deaf people (Young and Hunt, 2011) or the briefing Understanding Deaf people culturally: Implications for service provision (Deaf with Dementia project).

Deaf with dementia

Deaf people who use sign language are not known to be more or less likely to experience dementia than the general (hearing) population, but it has not been studied extensively. There are good reasons, however, to be concerned that the early signs of dementia among Deaf people are likely to be missed, both by family or community members and by professionals from whom they seek advice and support.

There is very little information available about dementia in BSL and general knowledge in the Deaf community about dementia is poor. Typically hearing professionals have never met a Deaf person before and have little understanding of the Deaf community and its culture. Direct communication between professionals and Deaf people is rare – communication via an interpreter is much more likely. This makes it difficult to spot behavioural or linguistic characteristics that might be significant in making a diagnosis. There have been, until recently, no validated psychometric tests in BSL that are culturally appropriate for Deaf people (see below). Few support services for people with dementia and their carers are accessible for Deaf people.

Learning about Deafness and dementia

A research project, ‘Deaf with Dementia’ funded by the Alzheimer’s Society and launched in 2010, has started to address these gaps in knowledge and to support the improvement of services for Deaf people with dementia. The project has interviewed Deaf people with dementia and their carers, held discussions with members of the Deaf community and developed some new cognitive tests in BSL (see below). The work is just beginning to be published in early 2014 (for example, Ferguson-Coleman, Keady and Young 2014) and will be disseminated widely to professional audiences and the Deaf community during 2014/15. This dissemination will include the creation of a new information hub about dementia in BSL. For more information, visit the
Deaf with Dementia research project.

Progress in diagnosis

One of the early developments as a result of the Deaf with Dementia research project has been the establishment of a new clinic which can offer specialist diagnostic services. The clinic can accept referrals of patients who are Deaf BSL users and who have suspected dementia. It is based at the National Hospital for Neurology and Neurosurgery in London.

The clinic can offer assessment in BSL using validated tools that are culturally and linguistically appropriate for Deaf people. This is important because simple translations into BSL of existing assessments are not likely to produce accurate results. The new tests that have been developed are the BSL Cognitive Screening Test and the BSL Verbal Memory and Learning Test. These tests are not yet widely available for use but for more information about this clinic, visit the Deaf with Dementia research project.

Communication is the priority

The most important issue for professionals working with Deaf people with dementia is communication. Deaf professionals who are social workers, nurses, psychologists or care workers, for example, have a significant advantage. They are fluent BSL users already, and they are able to tune in to the communication strengths of the person with dementia and recognise their difficulties. Even hearing people who might be fluent BSL users are generally less able to adapt their language use in this way. But it is extremely rare for Deaf people with dementia and their carers to meet a Deaf professional with whom they can communicate directly. It is much more common that their interaction with services is via an interpreter. However, there are unfortunately many examples of poor practice where a professional assumes that they can communicate well enough, or that the Deaf person does not really need an interpreter because they can lipread.

Getting the basics right

It is vital that any professional who has contact with a Deaf person with dementia or a Deaf carer reflects on their own assumptions about communication and considers whether their skills and knowledge are adequate. Five useful questions to consider are:

  1. Do you know what this individual’s language preferences and language strengths are?
    Just because an individual seems to be able to lipread, does that mean it is their easiest or preferred way to communicate? A Deaf person who uses BSL has a right to services in their preferred language. Dementia can seriously affect language use, therefore beginning with an individual’s communicative strengths is vitally important.
  2. Do you know how to use an interpreter?
    When a conversation is being interpreted, do you know where to look? Towards the interpreter or the Deaf person who is signing? Have you considered the implications of always being behind when a Deaf person is signing? Remember that the spoken language interpretation will be out of sync with the Deaf person’s signing, therefore body language/facial expressions will not match up with the spoken language message. This can be confusing because it is harder to ‘read’ an individual’s feelings behind what they are saying.
  3. Have you considered other issues about the individual’s health and wellbeing that might also be relevant to good communication?
    Has the person’s sight deteriorated? If so, ensure they are wearing their spectacles before starting a discussion.
  4. Are you depending too much on hearing people to tell you about the Deaf person because it’s easier for you to communicate with them rather than with the Deaf person?
    Most Deaf people have hearing children. Communicating with them might seem easier for the hearing professional but can mean that the Deaf person with dementia is not as fully involved as they should be and their ability to express their own wishes and preferences might be reduced.
  5. If you can sign, is your signing good enough to be able to pick up the nuances and complexities of a Deaf person’s language use if they have dementia?
    Many hearing professionals overestimate their signing skills or assume that a Deaf person will adjust their signing to ensure good communication. A Deaf person with dementia might use unconventional or highly creative forms of signed communication that might be very hard to follow for a non-native user of the language. They might also have a reduced ability to follow a hearing person’s signing if it has grammatical errors or uses unfamiliar signs.

If you need to find a BSL/English interpreter you can contact the Royal Association for Deaf People.

Information about dementia in BSL

It is a myth to assume that providing information in a written form solves communication difficulties. Many older Deaf people do not have good literacy in a written language such as English, but might have strong literacy in a signed language such as BSL. For some older Deaf people from minority ethnic backgrounds, written English might be their third and least fluent language. So written information about dementia is not usually accessible for many older Deaf people. Consequently general knowledge in the Deaf community about dementia is quite poor.

When a Deaf person looks for information on websites it is rarely if ever available in sign language too. There are some translations available of information about dementia in BSL but these tend to be translations of material that has been created for hearing communities. It has not been created from scratch for Deaf people in a way that makes the information culturally relevant. The Deaf with Dementia research project has demonstrated the importance of gaining information and knowledge about dementia in BSL through the use of discussion groups. These involve active learning instead of passively watching a video or DVD.

Improving services

The majority of Deaf people choose another Deaf person as a life partner and around 10 per cent of Deaf parents have Deaf children. Therefore Deaf carers are very common in the Deaf community and they too can face distinct challenges in accessing support services both for themselves and for those they care for.

Thankfully, some good examples are beginning to emerge of services for Deaf people with dementia and their carers – such as dementia cafes that ensure that a BSL/English interpreter is present to assist with supportive communication between Deaf people with dementia and their carers, and other users of the cafe. In Northern Ireland, the Alzheimer’s Society and the British Deaf Association have teamed up to provide training in BSL to Deaf people who wish to become ‘Dementia friends’ under the scheme being led by the Alzheimer’s Society.

Younger Deaf people are becoming much more aware about dementia. Knowledge about dementia and why early identification is important is starting to spread through the community.

Some carer support services are provided by Deaf people to Deaf people such as the Royal Association for Deaf People Deaf Carers project which provides:

Downloads

All SCIE resources are free to download, however to access the following downloads you will need a free MySCIE account:

Available downloads:

  • Activity: Deafness and dementia
  • What the research says: Sensory loss