APPG Dementia Survey

All Party Parliamentary Group on Dementia seeks written evidence

Please take the time to get involved with the All Party Parliamentary Group on Dementia survey. This may be of interest to individuals affected by Leukodystrophies that can cause dementia symptoms. The information below was taken from the Disability Rights January 2022 Newsletter, if you have any questions please contact



This year the APPG is undertaking an inquiry into what people affected by dementia want and need from a social care workforce to live well and on their terms. As a part of this inquiry, the APPG is seeking written evidence, particularly from people with dementia, but also their carers, on a wide range of topics, including:


-What are the specialist needs of people with dementia who draw on care and what the barriers are there to them accessing this care?

-How those with dementia from underrepresented groups are supported in care?

-How technology and research can be used to support care staff in delivering more personalised care?

-How the Government’s proposals on reforms to the social care workforce will support people with dementia?


If you are living with dementia or are a carer of someone with dementia, please complete the online survey to share your story.

If you are an organisation or work in social care or academia, you can either: email your evidence to the APPG by using this Word Document or submit evidence online by completing this online form.

The evidence submission window will be closing at COP on Monday February 14th. If you would like to submit evidence, but do not feel you will be able to meet this deadline, please contact the APPG.

If you have any questions, or would like any further information, you can visit

Alex - The Leukodystrophy Charity