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Carers speak frankly about how their legal rights have been affected by the Coronavirus Act 2020

Law 4 Dementia Care (L4DC) is a partnership project between the Life Story Network/tide and Making Space, funded by The Legal Education Foundation whose aim is to raise the awareness and knowledge of the legal rights of carers of people with dementia. Everyone’s life has been affected by the pandemic, for carers, this has been devastating. The Coronavirus Act 2020 contains ‘emergency powers’ to enable public bodies to respond to the Covid-19 pandemic. The L4DC project has been collecting evidence on how carers’ legal rights have been affected since the introduction of the Act to inform its 6-month review. The project found 32% of carers said they knew their legal rights and had access to information.  There was overwhelming frustration that even when carers know their rights, these were ignored or overruled by health and social care staff. With one carer saying,

There was a situation at … Hospital over my husband’s care where I was told that POWER of ATTORNEY just simply didn't matter. They took him off, asked him thousands of questions which he couldn't answer so he began to make up the answers and this affected ... influenced the care they gave him ... or in this case DIDN'T give him. He was discharged with severe concussion, couldn't walk out of A and E,  and was being sick ... and not making any sense to me. I had to take him back next morning because he was bleeding from his eye ... to find out that they had recorded the rubbish he had spoken even though he had dementia and recorded it as FACT. The second time they did allow me to stay with him as his representative. I know my legal rights and those of my husband were breached but did not know enough to stand my ground.”

The Act gave local authorities the right to invoke Care Act easements (in England) where this is considered necessary. A lack of transparency about decision-making processes saw some local authorities change their practices severely affecting carers and those they care for. L4DC has made 7 recommendations. You can read the findings of the review and the recommendations in the report: Download Summary Report  


More about: tide gives 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. Carers of people with dementia are the biggest workforce in dementia care providing 44% of the total cost of caresaving the economy £13.9bn a year.   Making Space are committed to working with tide and our partners to ensure that carers’ rights rights are afforded the protection that they are entitled to and rightly deserve.  

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