With emergency legislation needed as the world fundamentally changes in order to cope with the COVID 19 pandemic, the more we lose some of our fundamental rights already protected by law. Here at tide, we give a voice to carers of people with dementia. As experts by experience, tide’s members are people who are currently or have previously experienced looking after people with dementia. They understand what is needed for people with dementia on a day to day basis. Making Space is “committed to working with tide and our partners to ensure that carer’s rights are afforded the protection that they are entitled to and rightly deserve.” Before the pandemic, tide and Making Space have been working in partnership on a project called Law 4 Dementia Carers. This 2-year project funded by The Legal Education Foundation, is working with the Justice Hub at the University of Manchester and is looking at the legal including human rights issues that affect carers of people with dementia. With Covid-19 rapidly changing the world, a new Act of Parliament was passed on the 25 March called the Coronavirus Act 2020 . Fast-tracked through parliament in four days the Act contains ‘emergency powers’ to enable public bodies to respond to the Covid-19 pandemic. There is an acceptance that emergency legalisation is needed at this unprecedented time, however, we are concerned about how the health and social care aspects will be implemented locally. The emergency legislation allows individual local authorities to enact Care Act Easements where they consider it necessary to do so. Our key concern is how the Coronavirus Act 2020 will impact carers of people with dementia and their access to assessment and support as set out under the original Care Act 2014 Anna Gaughan, Chief Executive of tide said,

“We are extremely concerned about this new legislation and the potential impact on carers of people with dementia, who are currently vulnerable, exhausted and neglected despite their contribution to the care economy. It is estimated there are 850,000 carers of people with dementia in the UK. With the current pandemic, these numbers are set to rise as provision of care home places are reduced and additional respite care has been withdrawn. Dementia won’t stop for the pandemic and we are talking to our members who are caring for someone with dementia, without access to their usual support network. Indeed with even family and friends visits now limited, the carers are doing more than ever with less support”

Here at tide this is how we will ensure carers of people with dementia experiences are captured and listened to during this current crisis. The Law 4 Dementia Carers project will now:

1. 1. Gather feedback from people’s lived experience to contribute to and inform the 6-month review that the Government will be conducting in September.
   2.  Share information about the new legislation and what this means for carers of people with dementia; what the changes are, what they are aiming to achieve and how this is different from what is usually in place.
   3. Find different ways to engage with carers, sharing experience and learning from each other, about what this actually means in practice.
   4.  Ensure that even in these difficult times, carers human rights are respected and maintained.

You can find out more about tide by visiting our website or help us continue our work by making a donation Join the mailing list Follow us on Facebook and Twitter -------------------------------------------------------------------------------------------------------------------- Editor Notes Who are we? “Making Space is a national charity and leading provider of health and social care services across England. Making Space have been helping adults with care and support needs, and their carers, to lead independent and fulfilling lives for 37 years. Making Space delivers high-quality care, including support and enablement services for people with a range of needs, including complex mental health needs, learning disabilities, older people and people with dementia. Making Space supports nearly 10,000 people each year with dementia and their family carers” At tide, we empower carers by recognising them as experts by experience. tide aims to equip carers with the tools and confidence to use their knowledge and experience in a positive way so that other carers can benefit from their strength, make their voice heard and bring about real change. tide is a free network open to any carer, or former carer, of someone living with dementia. Each individual’s experience is valuable and welcomed Together in Dementia Everyday (tide) Registered Charity no. 1186976 Our work with people with dementia has shown that the phrase “Dementia sufferers”, or using the word suffering to describe dementia has a strongly negative view from people with the condition. We would request that you avoid using the phrase in headlines or in any article you publish to combat the negative way that people with dementia feel the condition is described. Find out more about the wok of tide, visit www.tide.uk.net/ If you would like to interview a local carer, or would like further information on tide, please contact Vicki@lifestorynetwork.org.uk Tel: 0151 237 2669 / Mobile: 0771 9986951