Select committee: Health and Social Care Committee

Supporting those with dementia and their carers

Closed Opened 12 May 2021 Closed 1 Mar 2022 2 recommendations 7 conclusions
Inquiry scope (the committee's words)
Many of those living with dementia and their carers rely on support from the social care system. However, those living with dementia can face catastrophic costs, the system can be difficult to navigate and many are left unable to access the care they require. This short inquiry will consider how the social care system is supporting those living with dementia. It will build on work from the Committee’s recent inquiry into Social Care: fund and workforce to further consider what changes must be made in the long awaited reform of the social care system to support those with dementia. The inquiry will be held over two sessions. The first will explore the experiences of those living with dementia, the support currently available and what good care should look like. The second will consider the Government’s commitment to ensuring all those living with dementia care are able to live well.

Where it stands

The inquiry is closed, opened 12 May 2021.

The committee has published 1 report, most recently Seventh Report - Supporting people with dementia and their carers on 29 October 2021.

The government's response

No government response linked yet: deadline 29 December 2021, 1768 days ago.

Recommendations and conclusions 9 shown

Conclusion 1

Conclusion · Seventh Report - Supporting people with dementia and their carers · Addressed to Department of Health and Social Care

Concluded (the committee's words)
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.

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Conclusion 2

Conclusion · Seventh Report - Supporting people with dementia and their carers · Addressed to Department of Health and Social Care

Concluded (the committee's words)
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.

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Conclusion 3

Conclusion · Seventh Report - Supporting people with dementia and their carers · Addressed to Department of Health and Social Care

Concluded (the committee's words)
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.

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Conclusion 4

Conclusion · Seventh Report - Supporting people with dementia and their carers · Addressed to Department of Health and Social Care

Concluded (the committee's words)
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.

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Recommendation 5

Recommendation · Seventh Report - Supporting people with dementia and their carers · Addressed to Department of Health and Social Care

Recommended (the committee's words)
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.

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Conclusion 6

Conclusion · Seventh Report - Supporting people with dementia and their carers · Addressed to Department of Health and Social Care

Concluded (the committee's words)
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.

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Conclusion 7

Conclusion · Seventh Report - Supporting people with dementia and their carers · Addressed to Department of Health and Social Care

Concluded (the committee's words)
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.

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Conclusion 8

Conclusion · Seventh Report - Supporting people with dementia and their carers · Addressed to Department of Health and Social Care

Concluded (the committee's words)
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.

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Recommendation 9

Recommendation · Seventh Report - Supporting people with dementia and their carers · Addressed to Department of Health and Social Care

Recommended (the committee's words)
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.

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Reports

1 report

Oral evidence sessions

1 session

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Date Session and witnesses Source
18 May 2021
Oral evidence session
Caroline Abrahams · Age UK, Fiona Carragher · Alzheimer’s Society, John, an individual with lived experience, Johnathan, an individual with lived experience, Sarah Pickup · Local Government Association
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Who gave evidence

5 witnesses

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WitnessOrganisationSessions
Caroline Abrahams · Charity Director Age UK 1
Fiona Carragher · Director of Research and Influencing Alzheimer’s Society 1
John, an individual with lived experience Not recorded 1
Johnathan, an individual with lived experience Not recorded 1
Sarah Pickup · Deputy Chief Executive Local Government Association 1

Correspondence

1 letter

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