In legal terms, dementia is recognised as a disability and in recent years, this recognition has been an important factor in our tide campaign for positive change. Acknowledging that dementia is a disability helps to identify the misconceptions and barriers that exist in society, which often prevents people living independently for as long as possible and shines a light on the immense pressure placed on family carers, often ignored and undervalued by policy makers, commissioners and society as a whole.
Recognising that dementia is a disability and that it is covered under the Human Rights Act, the UN Convention on the Rights of Persons with Disabilities and the Equality Act has a number of benefits, including greater legal protection, entitlement to support, and a positive cultural shift in recognising the true cost of dementia. It will particularly highlight the legal obligations of all organisations to respond appropriately to the needs of people living with dementia and their carers. Despite this many carers are unaware of their rights and how to exercise them as individuals in their own right.
Stigma, prejudice and a lack of understanding about the condition, as well as discrimination on multiple grounds including ethnicity, age and gender, compounds an existing postcode lottery of services for people with dementia and their carers across the UK. This can include, but is by no means limited to, access to healthcare, workplace rights, access to financial support and help for carers. In addition, both people living with dementia and their carers have a legal right to be fully involved in all decisions affecting them at all levels including: policy, research, commissioning and practice.
Against this backdrop the All-Party Parliamentary Group (APPG) on Dementia has launched an inquiry into dementia and disability. The APPG is looking at how people view dementia and what it means to identify dementia as a disability.
The APPG has announced a call for evidence for this inquiry and welcomes submissions from as wide a range of organisations and respondents as possible. The APPG will gather evidence until Friday, July 20, and will produce a report in autumn 2018.
Anna Gaughan, our Chief Executive welcomes this Inquiry and says “It is absolutely imperative that we move beyond the narrative of ‘Dementia Friendly/ Dementia Friends’ and recognise that both people living with dementia and their unpaid carers have legal rights based on UK and international law. Our work equipping carers with the knowledge, skills, confidence through our tide Carers Development Programme, is underpinned by a rights based approach. We believe that it is essential that carers of people living with dementia have a robust and distinct voice on the human rights issues that affect them, their families and friends and we will continue to empower them to have not only their voices heard but acted upon”.
We would love to know your thoughts and experiences, and use them to help formulate our submission of evidence to the APPG, if you wish to contribute you can do so here.