APPG disability and dementia

Giving evidence on dementia as a disability

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.'

Contact the APPG

To join the distribution list and be invited to future APPG meetings email [email protected] 

Email APPG
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2 comments

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Don't these well meaning Politicians realise that our Country has a huge crisis on its hands, & inadequate care via NHS ? Around 1 million people have Dementia diagnosed conditions, & very likely many more are as yet undiagnosed. Entitlement to NHS Continuing Healthcare is vague, & people are frequently refused care unfairly. The expected Green Paper on Social Care has been repeatedly delayed. Our Politicians should be ashamed, but instead are still talking rather than acting to make the current system work more effectively.
This Christmas I understand around 5000 people occupied Hospital Beds because no care arrangements were organised in their Homes. At £850 per Bed each day that was around £4 million wasted every day. Care in your own Home 24/7 costs around £1000 per week. I will leave the Politicians & NHS to do the maths.
There is plenty of evidence that NHS is failing to cope . I am doing my best to help people to cope looking after their loved ones in their own Homes . Advice on how to make a claim is available on my website at https://continuinghealthcare.wordpress.com/
I hope this is of assistance to lots of people. Best wishes.
Peter Garside

I hope someone hears my plea, I care for my father who has been diagnosed with Alzheimer’s and mother who has serious health problems. I live with them and have to do everything for them. I am trying to complete a science degree but caring takes me away from completing final assignments and having to work from home now as an external student.
I am not able to have any financial support from the state because of the status ‘ student’ despite not having any funding from student Finance England .
There is a systematic failure as I have been using my savings for eight months to enable me to care for both Dad and Mum, savings that have almost gone with no hope of any financial support. I have had a benefit check through Citizens advice who confirm there is no financial support available despite caring 24/7 and squeezing in as many minutes a day to continue completing my BSc as I Haagen had to register as an external student. I visited my local benefits department for help but was told leave your course, that would mean giving up my hope of becoming an environmental scientist as a mature student who through a caring role has strived to do something to benefit society, but also juggling caring at home.
I would like politicians to look at such failures, I have been refused an Occupational therapist assessment at home by my local social services department despite the risks at home, to be told we don’t do Occuoational assessments you have to buy safety rails etc despite communicating the risks I am faced with on a daily basis.
The list goes on, is there anyone who can sort out this national care crisis or will things just be discussed, round and round the table with lack of actual real time action.?
I find that it is absolutely shocking at how I find myself in a desperate situation unable to work to support myself, or have protected time to finish my degree I have worked so hard for, and not a single penny to help me whilst I care for two vulnerable adults. Without my continuous care both would actually be left vulnerable and as caring daughter I can’t turn my back on them. But I am suffering in all walks of life for such a decision . How many more are like me, this is facti and not a moaning individual.
Also I have to add I am a qualified nurse who decided to try and make a difference by undertakeing a degree that would complement nursing and environmental health. I have achieved very good grades at university and it is so sad it’s all slipping away because of my caring roll.
I now from a caring role am experiencing the failures from the other side and I am actually disgusted by the lack of care and support, and complete systematic failure to address the needs of vulnerable people such as my parents.
I rest my case, will someone please be proactive and actually make a difference?

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