Dementia report highlights importance of Care Supporters
21/05/2025
The Care Quality Commission have published a new report called “Health and social care support for people with dementia” as part of their Dementia Strategy, to review the experiences of people with dementia in England, and see how services are responding. With such a high proportion of people in care homes living with dementia, they are a group who urgently need a legal right to a Care Supporter. We are campaigning for Gloria’s Law, to ensure that every person in a health or care setting would be able to rely on a chosen representative to be their eyes, ears and voice when needed. This report demonstrates exactly why that right is needed.
The report emphasises some of the key challenges faced by people living with dementia in care, such as:
“Only 29% of the care workforce in England have had any kind of dementia training”
“In care homes where everyone is aged 65 or over, where the majority of people have dementia, 75% more notifications or allegations of abuse are submitted than those where people with dementia are a minority”
“In care homes, as the proportion of people with dementia increases, staff-to-person ratios decrease, staff turnover increases, there are fewer qualified staff, and fewer staff have named supervisors.”
One section in particular focuses on family and carers. The Urgent and Emergency Care survey, used as part of the research, found that carers stepped in on behalf of their loved ones to ensure they received food and attention, and to make sure care and treatment was properly explained. They also found that family carers were consistently stepping in to fill gaps in personal care provision, particularly when their loved one was in hospital. It is essential that health and care settings have appropriate staffing levels and training to ensure personal care can be delivered by staff, but when the person drawing on care wants their loved one - who often was their main carer before they moved to a residential care setting - to assist, this should be facilitated. Without the legal right to a Care Supporter, this is not currently protected, and we have supported people through our adviceline who have faced repercussions such as restrictions for acting on their loved one’s wishes in this way.
Communication was a consistent issue, with surveys finding that communication between staff, management and family members was poor. Calls and requests for meetings were ignored, and concerns weren’t addressed. This experience is incredibly common on our adviceline, where the lack of legal right sitting with the individual in care to have a chosen representative leaves them and their loved ones distressed and confused when trying to access information. Effective communication is key to good dementia care. The feedback for outstanding care homes often included comments about diligent communication, where they are listened to when they raise issues, actions have been taken, regularly reviewed and communicated back to the families.
The report also cites that people living with dementia may need assistance with tasks like contacting their GP, relying on family members for support, however we frequently support people who struggle to navigate systems on behalf of the person, even despite having power of attorney. Sometimes care providers will speak to health services on behalf of the resident without involving their loved one, which can increase confusion for the resident with dementia when their loved one is not up to speed with their care delivery.
The report also speaks to the importance of relationships for enhancing people’s sense of self. Despite the essential nature of maintaining relationships with loved ones to the wellbeing of people living with dementia, they still do not have this as a guarantee, and care providers can make changes to the nature of their visits, without considering how much of a negative impact this can have on the person. The right to a Care Supporter would facilitate the right to family life under the Human Rights Act for people receiving care - a key part of delivering personalised-care for people living with dementia.
You can sign up to support our campaign for the legal right to a Care Supporter here.