Next Steps to Put People at the Heart of Care.
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This blog is shared from Alzheimer’s Society's, with their view on the Next Steps to Put People at the Heart of Care announcement from the government last month, and what this means for people living with dementia.

In December 2021, the Government published its People at the Heart of Care white paper, setting out a much-needed 10-year vision for reforming adult social care.  When released, Alzheimer’s Society welcomed this paper for setting out a much-needed vision for social care that covered key concerns around quality, access, support for the workforce, and recognition of unpaid carers. 

More recently, in April 2023, the Government laid out its ‘Next Steps to Put People at the Heart of Care.’ We met this document with more mixed feelings, as along with the delay to the implementation of the cap on care costs, it signals that the white paper will not be implemented to the full extent that was promised. Much-needed cross-sector investment is still lacking. So, where does this leave the 750,000 people living with dementia in England?

With no current cure for dementia, quality social care can be a lifeline, with many drawing on care to help manage their symptoms. However, decades of underfunding and neglect have resulted in care that is costly, difficult to access, and too often, not tailored to people’s needs. The current system is simply not set up to deliver the high-quality, affordable, and personalised care people living with dementia want, need, and deserve. This must change – and that can only happen with sustained investment into the social care system, driven by a clear sense of direction and purpose.  

Right now, of the £1.7bn Government initially committed to social care reform in 2021, we believe that up to £600m remains unallocated. We need clarity as to why this is the case at such a critical time for the sector. The recent British Social Attitudes Survey saw just 14% of respondents satisfied with social care, with the top reason being that people do not get all the social care they need (64%). This was followed by the pay, working conditions and training for social care workers not being adequate (57%) and there not being enough support for unpaid carers (49%). It’s vital that the Government confirms how and when unallocated reform funding will be used to address these fundamental areas, complete with a timeline and plan for investment.

Currently, there are around 900,000 people living with dementia in the UK, which is estimated to increase to nearly 1.6m in 2040. We know that dementia is a complex condition crossing multiple services such as the healthcare system at the point of diagnosis and the social care system for ongoing post-diagnostic support to help people to manage their symptoms, making it a system-wide challenge with many interdependencies. It requires a system-wide approach to achieve tangible improvements. The integration of health and care services has presented an opportunity for people living with dementia to experience better joined-up care, but this will require sustained sector-wide funding to achieve. 

It is difficult to see how the Next Steps plan can fully deliver on the ambition of the White Paper. There is a clear focus on improving hospital discharge, and while addressing this is important, it remains a subsection of a much bigger sector-wide challenge. We need parity in funding allocations between the NHS and the social care system to help fully achieve the joined-up care that people living with dementia want, need, and deserve. The social care system must be treated as an equal partner alongside the NHS and must not be viewed as simply a supporting service. It’s critical that sustained investment into joined-up and preventative services for people living with dementia is prioritised, which can in-turn help reduce admission and consequently, discharge. This can be achieved by investment in providing high-quality and easily accessible social care, alongside improved support for unpaid carers. In severe cases, carer breakdown can lead to admission to hospital or mental health services, with potential wider impact seeing the person being cared for needing to be hospitalised if their carer is unwell, even without having a clinical need themselves due to a lack of available community support. If carers can easily access holistic support, not only can it improve their wellbeing, but potentially help avoid unnecessary hospital admission, resulting in savings for health and social care systems.

It’s positive to see at least £25m to kick-start a change in the services provided to unpaid carers confirmed, however this only goes so far in addressing the challenges that unpaid carers of people living with dementia encounter. 

We’re encouraged by the new co-developed Care Workforce Pathway and related call to evidence, which we have responded to informed by our learnings from the recent APPG report Workforce Matters. However, we’re concerned to discover that the £500m announced in the White Paper for workforce training and qualifications has been halved. 

The social care workforce has been poorly supported for years, with a concerning current vacancy rate of 152,000. There are too few staff, turnover is too high, and staff are not paid well enough and have limited advancement options. Importantly, many staff are not equipped with the right knowledge and training to effectively support people with dementia. It’s essential that we grow the social care workforce to help reduce the pressures faced by unpaid carers and address the difficulties they face in finding available support when needed. Around 40% of people with dementia live in a care home or nursing home in England, and around 13% draw on professional (domiciliary) care at home.  Around 60% of people drawing on care at home across the UK have dementia. In England, 70% of residents of older age care homes have dementia. It is therefore essential that the care certificate qualification announced includes mandatory training on how to provide dementia-specific care and support.

We have hope for the future as we know disease modifying drugs are coming, however they are not available right here, right now. Drugs will only be effective for certain subtypes of dementia, so people still need easily accessible, high-quality, and dementia-specific support. As well as looking at hope for tomorrow, we must also therefore focus on help for today. Alzheimer’s Society stands ready to be a critical friend when needed, but also to support the Government in planning and delivering the changes we all want and need to see, on behalf of everyone living with dementia.

    Ashton works as a Policy Officer within the Policy Team at Alzheimer’s Society and has a particular interest in and understanding of the social care system and how this works for people living with dementia. Her work focuses on the cost of care, alongside support for unpaid carers.

    She has a background in providing and assessing complex information and advice regarding the social care system and its underpinning legislation.


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