Basket | Login | Register

 
 
 
 

Recommendations

2017: Dementia as a disability? Implications for ethics, policy and practice

Governments and policy makers

  • —Use the ongoing evaluation of progress with the implementation of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) as an opportunity to highlight whether national provisions apply equally to people with dementia. If this is not currently the case, take necessary measures to rectify this in order to ensure that dementia is considered in relation to all policies linked to the application of the CRPD.
  • —Involve people with dementia in the CRPD ongoing evaluation process (e.g. by asking them to provide testimonies and commentaries).
  • —Audit, and revise where necessary, official information and guidance regarding people with disabilities aimed at government departments and agencies, employers, businesses, organisations, and members of the public. This includes appropriate references to dementia as a condition which can give rise to impairments that can constitute a disability, and how disability legislation and rights would apply for people with dementia.
  • —Ensure that people with dementia have equal access to provisions and services for people with disabilities (e.g. disabled parking badges, free travel on public transport, appropriate support in the work place etc.).
  • —Audit, and revise where necessary, training provided to all public sector staff with responsibilities for applying and upholding disability legalisation and rights, to ensure they are aware of and understand their duties and responsibilities to people with dementia when the impairments it causes constitute a disability.
  • —Audit, and adapt where necessary, public spaces and buildings to ensure they are accessible to people with dementia and other cognitive disabilities.
  • —Use the PANEL principles30 to inform policy and service development in a way that incorporates a rights-based approach and ensure that people with dementia are included in this. This is particularly important when countries are developing national dementia strategies.
  • —Meaningfully involve people with dementia and carers/supporters in the policy and service developments, and audits described above, in accordance with PANEL principles.

Alzheimer Associations

  • — Support people with dementia and carers to be on the boards and decision making structures of Alzheimer Associations.
  • — Support the active participation of people with dementia in relation to their own self-advocacy in policy development/research and political engagement.
  • — Enshrine the principle of elevating the voice of the person with dementia and placing the person with dementia at the centre in the organisation’s overall principles and ethos, whilst also recognising the vital role played by carers and supporters.
  • — Audit and revise where necessary, services and information provided to ensure they meet disability and human rights legislation as it applies to people with dementia.
  • — Use the PANEL principles to inform organisational and service development in a way that incorporates a rights-based approach and ensure that people with dementia are included in this.
  • — Actively pursue opportunities for taking test cases to court regarding possible disability discrimination against people with dementia.
  • — Meaningfully involve people with dementia and carers in the service developments and audits described above in accordance with PANEL principles.

Organisations of, or for persons with disabilities

  • —Audit, and revise where necessary, services and information provided to ensure they comply with disability legislation and rights as they apply to people with dementia to ensure they include appropriate references to dementia as a condition which can give rise to impairments that can constitute a disability, and how disability legislation and rights would apply to people with dementia.
  • —Meaningfully involve people with dementia and carers in the service developments and audits described above in accordance with PANEL principles.

Regulatory bodies

  • —Review and amend guidance on health and social care law and ethics to incorporate a social model of disability, disability legislation and rights, as it applies to people with dementia and other cognitive, physical and sensory disabilities.

The general public and institutions or organisations that have contact with or speak about people affected by dementia

  • — Bear in mind that impairments caused by dementia may result in disability.
  • — Realise that the provisions contained in the United Nations Convention on the Rights of Persons with Disabilities also apply to people with dementia who experience disability.
  • — Strive to ensure that people with dementia have access, if and when needed, to the same rights and support as people with other disabilities.
  • — Be sensitive to and respect people’s preferences regarding the use of the label ‘disability’.
  • — Aim to offer support and consideration in response to a specified, apparent or suspected need.
  • — Avoid making it necessary for people to state that they have dementia or disability in order to access any support they may need.
  • — Involve people with dementia in the development of initiatives to ensure their full citizenship and equal social inclusion in the local and wider community.
  • — Look for ways to promote the full citizenship and social inclusion of everyone rather than singling out people with dementia as a separate group (i.e. most if not all barriers are also encountered to some extent by people without dementia).

 

 
 

Last Updated: Friday 30 March 2018

 

 
  • Acknowledgements

    The discussion paper “Dementia as a disability? Implications for ethics, policy and practice” received funding under an operating grant from the European Union’s Health Programme (2014–2020).
  • European Union
 
 

Options