Supporting those with dementia and their carers

We conclude, in line with our report on Social care: funding and workforce, the current social care system is “unfair and confusing”. Those living with dementia remain unprotected from unlimited costs and navigating the system is burdensome for those providing support. This is unacceptable and it is therefore essential the Government’s White Paper addresses these issues with full reform of the social care system.

We are disappointed that the Government has not provided greater funding for social care in the next three years from the new health and social care levy, with no clarity about what proportion of the levy will go to social care after that period. However, the Government has pledged to look at the wider issue of social care funding at the upcoming spending review and it is essential that the starting point for the social care funding increase must be an additional £7 billion per year by 2023–24 to cover demographic changes, uplift staff pay in line with the National Minimum Wage and to protect people who face catastrophic social care costs. (Paragraph 20) Providing appropriate care and support for people with dementia

We have heard of the importance of receiving a timely diagnosis for people with dementia and their carers. We appreciate that the covid-19 pandemic will undoubtably have played a part in the recent decline in diagnosis rates which was previously on target. We also welcome the funding NHS England and Improvement has committed to bring the diagnosis rate back to the target of two thirds of those estimated to have dementia.

However, the evidence we have taken has made it clear that improving diagnosis alone is not sufficient: people living with dementia and their carers need appropriate post- diagnostic support throughout the rest of their life. We are clear that there should be no gap between receiving a diagnosis and providing both immediate support and planning longer-term care for someone with dementia. People with dementia and their carers should not be left to fall through the cracks of an uncoordinated and complex pathway across the health and social care system.

We recommend the Department of Health and Social Care and NHS England and Improvement use the White Paper to develop clear guidance on the care and support those living with dementia and their carers should expect to receive from diagnosis through to lifelong post-diagnostic support. This guidance must encourage integrated working across the health and social care system while also establishing clear responsibilities for Integrated Care Systems in coordinating care. Alongside this, there must be appropriate data collection along the whole dementia pathway to monitor activity and support improvement. We expect an update on this work by the end of November 2021.

As emphasised by Alzheimer’s Society and other key stakeholders, social care reform must be “rooted in the recognition of what good quality care looks like” and 20 Supporting people with dementia and their carers create a system where people with dementia are able to receive personalised care. We support this and believe that an essential foundation to this is a sustainable skilled and valued workforce. Reforms to deliver this must be a core part of the forthcoming White Paper including a focused effort to reducing the 30% turnover rates typical in the sector with a more strategic approach to social care pay, progression and conditions. We expect the Government’s recent commitment of £500 million to be spent on the social care workforce is unlikely to address these issues.

With many people preferring to stay living at home if diagnosed with dementia, it is vital that any future Government strategies for dementia support this becoming a reality. Initiatives such as Dementia Friends and dementia-friendly communities have successfully increased awareness of dementia but more needs to be done for those living with dementia to be included in their local communities.

Ensuring inclusivity for those living with dementia goes beyond the health and social care system. We heard that, for example, achieving inclusivity requires changes to housing and transport. Therefore, we recommended that the Government’s new dementia strategy must include cross-departmental initiatives to ensure people with dementia are able to remain connected to their community.

Unpaid carers play a vital role in supporting people with dementia. We would like to acknowledge their tremendous contribution, especially over the pandemic period and we welcome the eventual inclusion of provisions in the Health and Care Bill relating to carers. The Government must consider unpaid carers in their White Paper for social care reform. To ensure reforms enable unpaid carers to better support those living with dementia, the Government must provide unpaid carers with the opportunity to contribute to any plans for reform. Carers deserve our support as well as our thanks. The Government must bring forward a National Carers’ Strategy by the end of March 2022 with the aim of offering improved support for people providing care and should improve the Carers register. (Paragraph 56) Supporting people with dementia and their carers 21