Good Work framework: working with people living with dementia who have hearing loss, or use British Sign Language

Research shows there’s a link between hearing loss and cognitive decline.

There is strong evidence to show that:

• mild hearing loss doubles the risk of developing dementia
• moderate hearing loss leads to three times the risk
• severe hearing loss increases the risk five times.

We also know that BSL users have poor experiences of care.

This framework is based on the findings of this report.

Read more about the links between hearing loss and dementia on the Social Care Institute for Excellence website.

Before you use this guidance, you should read and understand the Good Work learning and development framework for Wales. This explains the main principles, values and skills you need to work with people living with dementia.

• Hearing loss is a preventable risk factor for people with dementia.
• There are different ways to communicate with people living with dementia and have hearing loss or who use BSL, such as using gestures.
• BSL is a language, not a communication tool. The Welsh Government officially recognised this in 2014.
• Reminiscence resources should be made available in BSL and have subtitles.
• There are different language professionals, including intralingual interpreters.
• There are lots of technologies you can use, as well as hearing aids and glasses.
• Makaton isn’t a language, but a way of communicating for people who have learning disabilities.
• Unpaid carers who have hearing loss or are Deaf have a vital role. They should have access to interpreters whether or not they’re looking after someone living with dementia who isn’t deaf or doesn’t have any hearing loss.
• Plans should be in place to make sure provision is ready before it’s needed.

Good support means planning in advance.

These learning outcomes are designed to prepare you for working with people living with dementia and who have hearing loss.

The learning outcomes you need to meet will depend on the situation.

You won’t need to achieve all the learning outcomes straight away, but you should be working towards achieving them. Small changes can make a big difference.

The outcomes are split into three sections:

• outcomes for informed people
  people who understand what dementia is and how it affects a person with dementia and those around them
• outcomes for skilled people
  informed people who have more detailed and comprehensive knowledge and skills across a range of key learning and development topics over time, according to their experience, role, interests and needs
• outcomes for influencers
  people who are informed, possibly skilled, who also have a management, leadership or strategic role.

You’ll also see where learning outcomes support the principles of the Mental Capacity Act.

1. Dementia and hearing loss

Hearing loss is a preventable risk factor with dementia. You should support and encourage people to use the technology that’s available and be able to help someone who uses aids.

Learning outcomes

The learner will:

• understand the links between hearing loss and dementia, and how this may impact people, including people with learning disabilities
• understand how ‘hearing loss’ or dementia may be hidden by other circumstances or symptoms
• understand the importance of maintaining good hearing for people living with dementia
• know what help is available through audiology services to support and prevent undiagnosed and unmanaged hearing loss.

Resources

These resources are available in English only. We’re not responsible for resources produced by other organisations.

• Making Audiology Appointments Dementia Friendly – Hywel Dda University Health Board
  A guide for staff.
  
  
• How Can Hearing Loss Cause Dementia? – National Library of Medicine (USA)
  Journal entry about dementia and hearing loss.
  
  
• Audacity magazine: issue 18 – British Society of Audiology
  
  
• RNID hearing loss and dementia how they’re linked – Royal National Institute for Deaf people
  Factsheet about how hearing loss and dementia are linked.
  
  
• Publications and dissemination: Deaf people with dementia – University of Manchester
  Research brief for Social Care Institute of Excellence (SCIE) about dementia and sensory loss.
  
  
• Speech-in-noise hearing impairment is associated with an increased risk of incident dementia article – Alzheimer’s Association
  Article about speech-in-noise (SiN) hearing impairment and dementia.
  
  
• International practice recommendations for the recognition and management of hearing and vision impairment in people with dementia – University of Manchester
  Article looking international practice recommendations for the recognition and management of hearing and vision impairment in people with dementia.
  
  
• The Lancet infographics dementia risk factors – The Lancet
  Infographics highlighting 12 potentially modifiable risk factors for 40 per cent of worldwide dementias.
  
  
• Animation: hearing loss and dementia – Centre for Ageing and Dementia Research
  Raises awareness of the link between hearing loss and dementia and the value of seeking help and using hearing aids.
  
  
• Why it is important to have help with your hearing (easy read) – Swansea Bay University Health Board and Cardiff and Vale University Health Board
  Explains to people with learning disabilities why they need to have help with their hearing.
  
  
• Why having a hearing test is important (easy read) – Swansea Bay University Health Board and Cardiff and Vale University Health Board
  Explains to people with learning disabilities why having a hearing test is important.
  

2. Generic communication

Gesture is a useful way to communicate for everyone.

The learner will:

• understand how gestures are part of everyday communication and learn to use them confidently
• be aware that everyone is responsible for using gestures and other non-verbal forms of communication
• find their own unconscious bias and develop an understanding of what it means to be ‘hearing’, and value difference.

Resources

These resources are available in English only. We’re not responsible for resources produced by other organisations.

• Dementia and deafness: what you need to know – Deaf Action
  PDF resources with information on dementia and deafness.

• Next of kin video – Cardiff University
  Story from a deaf perspective highlighting communication barriers.
  
  
• Book: An introductory guide for professionals working with Deaf and hard of hearing clients in clinical, legal, educational and social care settings (Amazon) – Dr Sally Austin and Dr Ben Holmes

1. Engaging with D/deaf or hard of hearing people

Intralingual interpreters are often called ‘Deaf Relays’. They're qualified Deaf interpreters. They work alongside BSL/English interpreters to provide a specialist and bespoke translation for Deaf people who need this service. Intralingual interpreters will make sure information is communicated and understood by both the interpreter and the Deaf person.

Working with an intralingual interpreter meets Principle 2 of the Mental Capacity Act: ‘Individuals being supported to make their own decisions’.

All staff should be aware of cultural differences and Deaf equality.

Learning outcomes

The learner will:

• recognise they should check the progress of any interaction regularly and that everyone is responsible for doing this know how their culture and mannerisms may influence their use of gestures and be aware of this when working with D/deaf or hard of hearing people living with dementia
• be able to describe the difference between interpreters and intralingual interpreters, and how they can be used while providing care and support.

Resources

These resources are available in English only. We’re not responsible for resources produced by other organisations.

• Publications and dissemination: Deaf people with dementia – University of Manchester
  Research brief for Social Care Institute of Excellence (SCIE) about dementia and sensory loss.
  
  
• Book: An introductory guide for professionals working with Deaf and hard of hearing clients in clinical, legal, educational and social care settings (Amazon) – Dr Sally Austin and Dr Ben Holmes
  
  
• The dementia guide: British Sign Language – Alzheimer’s Society
  YouTube video guide to dementia in BSL users.
  
• Factsheets – Alzheimer’s Society
  BSL videos explaining different types of dementias.
  
  
• BSL video – Alzheimer’s Society
  Explains the causes of Dementia.
  
  
• BSL video – Alzheimer’s Society
  Explains the different symptoms of dementia.

• BSL video – Alzheimer’s Society
  How to stay independent and healthy as possible.

2. Environment and technology

There are lots of technologies you can use to help people. There may be times when people won’t want to wear hearing aids or glasses.

If someone wears hearing aids you may still need to change how you communicate. For example, by using gestures.

This approach will enable you to take into account of Principle 1 of the Mental Capacity Act: ‘A presumption of capacity’ and Principle 3 of the Mental Capacity Act: ‘Unwise decisions’.

Learning outcomes

The learner will:

• be aware of environmental issues and their impact on communication and BSL, and on those with hearing loss or who are hard of hearing
• be able to show they can help someone who has hearing aids or glasses and find alternative technology, aids or support
• understand how to check and look after hearing aids, and ask or know what support is available
• make sure that when decisions are made about technology, they’ll be future proofed, for example, by making sure subtitles are always readily available
• make the best use of modern technology, supporting users to use them effectively and successfully, and to keep up to date with what’s available
• understand that although we have technology, the person has a choice in whether or not they use it, for example, wearing hearing aids.

Resources

These resources are available in English only. We’re not responsible for resources produced by other organisations.

• Hearing loss and dementia – Leeds NHS Trust
  Information about hearing aids.

3. Language and culture

Makaton is commonly used with those who have learning disabilities. Makaton is not a language.

BSL is a language, and has its own grammar and structure. The grammatical structure of BSL is completely different to English.

When someone uses signs in an English order they are using ‘Sign Supported English’. This is not BSL.

If deaf people have grown up learning to speak (oral communication) and learned BSL later in life, they may revert to oral communication or their native language when they develop dementia later in life.

Understanding communication or language preferences meets Principle 1 of the Mental Capacity Act: ‘A presumption of capacity’.

Learning outcomes

The learner will:

• understand that BSL is a language in its own right – it was recognised by the Welsh Government in 2014
• be able to describe how BSL differs from English
• be aware when they are working with people who might be using BSL differently, such as using signs that don’t exist anymore or are rarely used, or who start using Sign Supported English or speak or lip read because that’s the era they currently feel they ‘belong’ in
• ask the family or deaf person living with dementia about specific signs they may be using, or for their preferred interpreters
• be able to describe the difference between ‘D/deaf’ and ‘hard of hearing’, and how this has an impact on the provision of care and support
• be able to describe how language deprivation can have an impact on the way a person accesses, reads and understands information before they can make their own choices or decisions
• understand the importance of being connected to the community, appropriate networks and support staff acknowledge their own responsibility in finding the right support and resources, such as using the ‘sign bank’ for those who use regional variations of sign language.

Resources

These resources are available in English only. We’re not responsible for resources produced by other organisations.

• Publications and dissemination: Deaf people with dementia – University of Manchester
  Research brief for Social Care Institute of Excellence (SCIE) about dementia and sensory loss.
  
  
• Book: An introductory guide for professionals working with Deaf and hard of hearing clients in clinical, legal, educational and social care settings (Amazon) – Dr Sally Austin and Dr Ben Holmes
  
  
• The dementia guide: British Sign Language – Alzheimer’s Society
  YouTube video guide to dementia in BSL users.
  
  
• Dementia toolkit – The Dementia Centre
  Written for Deaf people but useful insight for health and social care workers.
  
  
• Deaf people with dementia research project – University of Manchester
  Information about a specialist memory clinic for Deaf people.
  
  
• Older people who use BSL: preferences for residential care provision in Wales – University of Manchester
  A 2010 study report commissioned by the Welsh Government.
  
  
• ‘Getting to Know Me’: the development and evaluation of a training programme for enhancing skills in the care of people with dementia in general hospital settings – Routledge
  Snippet of an article from ‘Aging & Mental Health’.
  
  
• BSL video – Alzheimer’s Society
  Explains the most common challenges of being Deaf and living with dementia, and practical tips about how to support someone.

1. Supporting staff to engage with D/deaf or hard of hearing people

Deaf awareness

Deaf awareness can provide health and social care staff with invaluable skills and insight into the hearing loss and Deaf communities.

At times, it may be more beneficial to have tailor-made training to meet the needs of the setting.

Hearing loss or Deaf unpaid carers

You should make sure people with hearing loss or Deaf people living with dementia do not have any barriers when receiving care and support.

This should also include unpaid Deaf carers, particularly if they are looking after a hearing person who is living with dementia.

Being able to communicate with carers who are Deaf or have hearing loss will make sure you are complying with Principle 4 of the Mental Capacity Act: ‘best interests’ if it’s needed at the time.

Tangible outcomes

Influencers will make sure that:

• settings are able to identify suitable D/deaf awareness providers and plan how this can be adapted to supporting D/deaf people living with dementia
• policies and procedures are in place that support working with D/deaf or hard of hearing unpaid carers.

Resources

These resources are available in English only. We’re not responsible for resources produced by other organisations.

• Next of kin video – Cardiff University
  Story from a deaf perspective highlighting communication barriers.
  
  
• Book: An introductory guide for professionals working with Deaf and hard of hearing clients in clinical, legal, educational and social care settings (Amazon) – Dr Sally Austin and Dr Ben Holmes
  
  
• ‘Getting to Know Me’: the development and evaluation of a training programme for enhancing skills in the care of people with dementia in general hospital settings – Routledge
  Snippet of an article from ‘Aging & Mental Health’.
  
  
• Older people who use BSL: preferences for residential care provision in Wales – University of Manchester
  A 2010 study report commissioned by the Welsh Government.
  
  
• BSL video – Alzheimer’s Society
  Explains the most common challenges of being Deaf and living with dementia, and practical tips about how to support someone.

2. Systematic changes

Having plans in place means settings will be ready to provide care and support to someone with hearing loss or BSL users living with dementia. This is important to make sure the person does not have to ‘wait’ for things to be in place.

You should also make sure settings are ready to work with carers with hearing loss or with Deaf carers who care for someone who is hearing.

Tangible outcomes

Influencers will make sure that:

• there are plans to promote understanding of the links between dementia and hearing loss for all social care workers
• they can describe and are ready to explore the principle of reasonable adjustments
• plans are in place to enable staff to learn BSL – balance learning sign language and tailoring it to the setting
• they can review and plan policies and procedures to make sure seamless booking of qualified and registered interpreters and other appropriate language communication professionals (lip speakers and so on)
• policies and procedures are checked regularly to make sure they do not create barriers for unpaid D/deaf carers
• there are plans to provide care and support to D/deaf or hard of hearing people immediately by following checklists
• plans are developed for Deaf BSL users so they can access information in their native or preferred language and are given opportunities to express themselves in their preferred language.
• there are policies to make sure people with hearing loss are included in individual care and support plans and that a person's language (if BSL) is reflected in their individual care and support plans
• there are plans to make sure BSL users can attend culturally appropriate and/or accessible activities that enable their status as Deaf citizens.

Resources

These resources are available in English only. We’re not responsible for resources produced by other organisations.

• Introduction to deaf awareness – National Deaf Children's Society
  
  
• An Introductory Guide for Professionals Working with Deaf and Hard of Hearing Clients in Clinical, Legal, Educational and Social Care Settings (Amazon.co.uk) – Dr Sally Austin and Dr Ben Holmes