APPG 2018 call for evidence

We are interested to hear from people in England, Wales and Northern Ireland about the APPG Inquiry into Dementia and Disability.

The APPG on Dementia is holding an inquiry into dementia and disability. We would like to find out what people think about dementia as a disability, what barriers people affected by dementia face in society and what can be done to make sure people with dementia are treated equally.

2018 APPG Inquiry 

Dementia and disability 

Despite the impairments caused by dementia being recognised as a disability under domestic and international law, people face significant challenges in realising their rights. One of the key reasons is that it is often seen as a ‘hidden’ or ‘invisible’ disability, as in some contexts the symptoms are less obvious. 

We know already that people experience challenges in a range of areas. People we have spoken to have told us: 

'People are surprised when I say I have dementia – they say ‘what, can’t believe it’ – it doesn’t stand out like something else might'

'I’ve thought of doing voluntary work, but as soon as you say to somebody ‘I have dementia’ you won’t get that voluntary work, because they know they can’t leave you alone… they know that there’s a liability there, you are a liability'

'The [benefits] assessor looked at the body – focused on the arthritis but didn’t want to hear about the mental problems. They ignored what I said I found difficult.'

As a result of this, we are seeking further evidence on the following questions – you do not have to answer all of them. 

  1. Please describe your views on dementia being identified as a disability 
  2. Do you feel that people with dementia are treated differently to people with other health conditions or disabilities? Please expand on your answer
  3. How have people with dementia been supported to live well and what else do people need in order to continue to live well?
  4. What do you think are the main challenges that people affected by dementia face in day-to-day life (for example using transport or in employment)? 
  5. What support currently exists to address these challenges and what future action do you think needs to be taken to address these challenges?

How it will work

Scope of the inquiry

This inquiry covers all forms of dementia and all ages. We are interested to hear from people in England, Wales and Northern Ireland. 

Disability is one of the protected characteristics within the Equality Act. Although people with dementia can experience discrimination on many grounds, this inquiry is focusing on disability. 

Structure of the inquiry

We will be gathering evidence until Friday 20 July 2018. This will include a one-off oral evidence session. We will produce a report in autumn 2018. 
We would particularly like to hear from:

  • People affected by dementia 
  • Third sector organisations including those representing carers and people with disabilities 
  •  Healthcare professionals and professional bodies 
  • Healthcare and service providers

How to submit evidence 

When you make a submission of evidence to the APPG, please ensure that:

  • Your submission is no more than 1,000 words
  • You state clearly who the submission is from, i.e. whether from yourself in a personal capacity or sent on behalf of an organisation 
  • You include a brief description of yourself/your organisation
Submit your answers

Please submit your evidence either by email or via our online survey. Alternatively, you can make a submission of evidence by post to 43-44 Crutched Friars, London, EC3N 2AE. If you would prefer to submit your evidence over the phone, please call Ella Robinson on 0207 423 3618.

Complete the survey Email your evidence

Wider information

Definitions 

Legislation across the UK differs but for the purpose of this inquiry, the following definitions of disability are relevant. 

The Equality Act (which covers England, Wales and Scotland) identifies disability as a protected characteristic

Disability is defined as: 

'… a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.'

The Disability Discrimination Act 1995 (which covers Northern Ireland) defines disability as:

 '… a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities.'


Dementia also falls within the definition of disability used internationally in the UN Convention on the Rights of Persons with Disabilities: 

'Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.'

Further context 

In the last few years, recognition that dementia is a disability has been an important part of campaigning for change for people living with the condition. Acknowledging that dementia can be a disability helps to recognise the barriers that exist in society that prevent people with dementia being able to live independently and provides a framework for action.   

Alongside this, there has been an increasing focus on taking a rights-based approach when talking about improving the lives of people affected by dementia, both at home and internationally. The new Dementia Statements, developed by people affected by dementia, clearly demonstrate that acknowledging the rights of people with dementia is essential to ensuring that people are treated as individuals.  

As well as this, last October, the UN Committee on the Convention on the Rights of Persons with Disabilities (UNCRPD), produced a damning report of the UK’s progress in implementing the Convention. The report mentioned dementia and the importance of addressing stigma around the condition and highlighted a number of actions that the Government needs to take to improve implementation of the Convention for people with disabilities.

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