Inquiry into dementia and disability launched by APPG on Dementia
Upholding the rights of people affected by dementia is the central focus for the APPG’s activity in 2018 and beyond, writes APPG Co-Chairs, Debbie Abrahams MP and Baroness Greengross.
In the last few years, recognising dementia as a disability has been an important part of campaigning for change for people living with the condition. Acknowledging that dementia is a disability helps to identify and recognise the societal barriers that prevent people with dementia living 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. Furthermore, the UN Committee on the Convention of the Rights of Persons with Disabilities (UNCRPD) only last year produced a report of the UK’s progress in implementing the Convention, and within that mentioned dementia and the importance of addressing stigma around the condition.
As Co-Chairs of the APPG on Dementia, we are passionate about ensuring that such a rights-based approach resonates throughout our work. That is why we are holding an inquiry into dementia and disability during the course of 2018.
Despite dementia falling within the legal definition of ‘disability’ within domestic and international law, it may not necessarily be viewed in this way by the public, organisations and people affected by dementia. The APPG is therefore interested to look at how different people view dementia and what it means to identify dementia as a disability.
It is clear that people with dementia face a number of challenges in having their rights upheld across all areas of life, including accessing healthcare services, exercising their right to vote or being able to live independently in the community. This can partly be because it is considered a ‘hidden’ or ‘invisible’ disability. The APPG on Dementia will investigate the barriers that people with dementia face in having their rights met and the impact of this on daily life and we commit to take action to implement change that overcomes these barriers.
At the launch event in Parliament on 15 May, we heard from people with dementia, carers and a variety of organisations interested in this topic. John O’Doherty who lives with epilepsy and dementia gave a very moving speech regarding the “marked difference in the rights and entitlements afforded to people who live with both these diagnoses”. This was made evident in his experiences in employment where the “protected characteristics of epilepsy were taken into account and reasonable adjustments were made”. This is in stark contrast to the “awkward silence” he was met with when he informed people of his dementia diagnosis.
It is time that this discrimination ended and we will continue to work to ensure that people with dementia are not treated differently because of their diagnosis.
A call for evidence is now open and we welcome submissions from as wide a range of organisations and respondents as possible, including people affected by dementia, third sector organisations, healthcare professionals and service providers.
The deadline for submitting evidence is Friday 20th July. To submit evidence, please visit www.alzheimers.org.uk/appg
After a process of evidence gathering, we will publish a report later this year. We are hopeful that through this inquiry we can create meaningful change for people with dementia at both a national and local level.
Debbie Abrahams is Labour MP for Oldham East and Saddleworth and Baroness Greengross is a crossbench peer in the House of Lords.