The All-Party Parliamentary Group on Dementia (APPG) is holding an inquiry into dementia and disability
What is the APPG?
The APPG is a cross party group made up of MPs and Peers with an interest in dementia. The APPG is run in partnership with Alzheimer’s Society and its aim is to raise awareness of dementia among parliamentarians and influence policy making in order to improve the lives of people with dementia and their carers.
The APPG on Dementia is currently holding an inquiry into dementia and disability. It is looking at 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. The APPG launched a written call for evidence to gather people’s thoughts on this topic, which received a record number of responses.
Gathering evidence about dementia and disability
Last month saw the oral evidence session for the inquiry. Both the written and oral evidence are currently being analysed and will feed into a report due to be published next year.
During the oral evidence session, the APPG heard directly from a number of people on how they feel about this important topic along with some tangible experiences and motivations for change.
The APPG took evidence from Sally Copley on behalf of Alzheimer’s Society, Philly Hare on behalf of Innovations in Dementia and DEEP – The UK Network of Dementia Voices, Emily Cook on behalf of Alzheimer’s Research UK, and Lena O’Connell and Cecilia Toole on behalf of tide – together in dementia everyday.
Hilary Doxford, who has early onset Alzheimer’s disease and is a member of the 3 Nations Dementia Working Group (3NDWG), also gave evidence at the session. The 3NDWG are a group of people living with dementia across England, Wales and Northern Ireland and who wish to contribute to the improvement of the lives of those who support and care for people with dementia and the work of professionals and policymakers working in this and related areas.
Hilary shares her experience of the session
'I attended the All Party Parliamentary Group on dementia on Tuesday 27 November to share my thoughts on how I felt about dementia being identified as a disability. On the day, Larry Gardiner a fellow member of the 3NDWG came to support me, his knowledge and speaking talents really added to the conversation.
The good news was we were oversubscribed and extra chairs were needed to accommodate everyone. This gave a feeling of energy and vibrancy to the meeting.
Baroness Greengross was the Chair, ably assisted by Debbie Abrahams, MP for Oldham and both are keen advocates for people affected by dementia.
How do I feel about dementia being identified as a disability?
It saddens and worries me that 6 years after the commencement of the Prime Minister’s challenge on dementia it was felt I needed to answer this question. What does it matter how I or any of us feel about the label? Language is important, but this discussion is a ‘nice to have’ topic for when the important issues that will make a real difference are sorted. Let’s stop what I and my 3NDWG friends consider low priority and diversionary talk and talk instead about fixing dementia care and doing something NOW.
I am lucky, I have an amazing husband. Larry very eloquently pointed out the additional problems for those who do not have a partner who cares. How many people are at the mercy of strangers? Many are good and kind but sadly too many are not.
All this because our rights under the legislation are either not implemented at all, are implemented inconsistently or barriers are put in our way. People give up what they are entitled to because they cannot fight the system while they try and fight the disease. It shouldn’t be a fight.
Are we disabled? Of course we are. If you ever have to listen to me speaking about my life, you will consistently hear me asking for assistance to ENABLE me to live as well as I can. My friends say the same.
We ask to be enabled because we are disabled. Under legislation, dementia is a disability. End of.
The Equality Act states I am disabled if I have a physical OR mental impairment that has a substantial long term negative effect on my ability to do normal daily activities.
That was written for dementia because not only do we have the cognitive mental disablement but many over time also become physically disabled.
So, people can decide for themselves if they want to use the disabled label, and where and when they use it, that is their right and their choice.
It is a shame we need a disability label to (supposedly) get us access to the rights we are entitled to, it hasn’t worked so far.'