Hidden No More: Dementia and disability

This 2019 report from the All Party Parliamentary Group on Dementia shines a spotlight on dementia as a disability. It seeks to enable people with dementia to assert their rights to services and for their rights as citizens to be treated fairly and equally. 

Dementia is a disability, according to domestic law and international convention.

Thousands of people who responded to the All-Party Parliamentary Group (APPG) inquiry agreed that they see dementia as a disability. But they told the APPG that society is lagging behind and failing to uphold the legal rights of people with dementia. 

The evidence reveals that, across the country, people with dementia are not having their disability rights upheld. This report seeks to highlight the human impact that this has on people living with dementia. It focuses on themes of equality, non-discrimination, participation and inclusion.

Read the 2019 APPG report in full

Societal barriers

This inquiry also revealed some of the barriers in society that are preventing people with dementia from living independent lives.

Almost all (98%) of the 2,521 survey respondents thought that people living with dementia are treated differently to those with other health conditions or disabilities.

They believe this is due to the ‘hidden’ nature of dementia, as well as the condition's individuality and surrounding stigma.

Submissions to this inquiry revealed that action needs to be taken across key areas. These actions will ensure that people with dementia receive the protections and safeguards that legislation and convention provides. 

In this report we focused on six of these key areas which have a direct impact on people’s daily lives. We identified opportunities for action, based on what respondents told us they found challenging in each area. 

6 key areas where action is needed

Employment

  • There needs to be more awareness of the employment rights of people with dementia among both employers and employees. 
  • People need to feel empowered to tell their employers about their diagnosis. 
  • Employers should feel supported to fulfil their responsibilities to make reasonable adjustments to ensure people with dementia can continue to make a meaningful contribution in the workplace.

(For more information and advice, see our dementia-friendly business guide)

Social protection 

  • People with dementia and their carers often need support to know what financial help they are entitled to, as well as how to make a successful claim. They deserve to be assessed by professionals who understand the condition, without having to undergo unnecessary reviews or reassessments. 
  • Assessment processes need to be clear and appropriate for people with cognitive impairments. 

(For more information and advice see our Benefits and Council tax guides)

Social care

  • The medical and social care support available to people with dementia is inadequate and inaccessible. 
  • The forthcoming Green Paper on social care reform must recognise and reflect the needs of people living with dementia, now and in the future.

(For more information, see our Fix Dementia Care campaign)

Transport

  • People with dementia face a lack of alternatives to driving. It is imperative that any changes to bus and community transport services are reviewed in the context of the Public Sector Equality Duty.
  • Reasonable adjustments must be made that enable people to continue to use public transport. 
  • There must be an increase in societal awareness to reduce the stigma and discrimination that people with dementia feel while using public transport.

(For more information and advice, see our Driving and dementia factsheet)

Housing 

  • People with dementia have the right to personal choice over where, and how, they live. Our evidence found that people want to live independently for longer. However, limited availability of appropriate housing means they are faced with a lack of personal choice. They must have access to adaptable housing, trained home care staff, and specialised supported housing schemes.

(For more information and advice, see our Dementia-friendly housing charter)

Community life

  • Communities must increase their awareness and understanding of dementia. People need to be supported through the development of inclusive communities where no one is excluded or has to face dementia alone.  

(For more information see our guide to making your community more dementia friendly)

Read the 2019 APPG report

Throughout this report we make recommendations, calling on local and national government to take action in each of the above areas of daily life. This will create meaningful change for people with dementia.

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