Dementia Action Week, House of Commons, 27 May 2021

Supporting people with dementia is not just a health and social care issue. Achieving dementia friendly communities is the responsibility of many council departments, all of which are financially stretched. Additional support is required to do more to develop dementia friendly communities.


Key messages

  • Councils are committed to supporting people living with dementia and their families to live the lives they want to lead in their local communities.
  • Supporting people with dementia is not just a health and social care issue. Achieving dementia friendly communities is the responsibility of many council departments, all of which are financially stretched. Additional support is required to do more to develop dementia friendly communities.
  • Appropriate housing, with a range of care and support, is key to supporting people with dementia and their carers. In order to ensure that people with dementia have access to the housing options that are right for them, we need government to give councils the powers and flexibilities to deliver more accessible homes for their communities.
  • COVID-19 has put adult social care firmly in the public, political and media spotlight. This emergency has highlighted the essential value of social care to the wider public and this interest needs to be harnessed in the debate about the future of care and support. Long-term reform is urgently needed.
  • Whilst we are pleased that the Queen’s Speech contained commitments to bring forward proposals on social care reform, councils urgently need a clear timeline. Councils will also want to see concrete funding proposals that will provide sustainable support to people of all ages across the country who draw on social care.
  • Our position is that the Government should make the case for increases in national taxation and/or a social care premium with different options for paying in. One of the key issues in taking such a significant step is the framing of the proposal. Too often we hear of the ‘burden of ageing’ or ‘tsunami of support for older people’. This starts from an inherently negative position. If we can portray investment in social care as an investment in us all – as part of our national infrastructure – we stand a better chance of winning public support.
  • Risk pooling is particularly important. Social care needs an equivalent risk pooling mechanism to the NHS, so that risk is shared amongst the whole population (on a means-tested basis for a degree of progressivity) to ensure nobody faces catastrophic costs, which can happen with families affected by dementia.
  • The pandemic has clearly shown how important it is to have a highly skilled, well equipped, and supported care workforce which has parity of esteem with the NHS workforce. There needs to be tangible improvements in the pay of the adult social care workforce, potentially more in line with comparable roles in the NHS, as well as investment in training and workplace development. As per our 2020 Spending Review submission, we believe the Government should commission an independent review of care worker pay and other terms and conditions.

Support for people living with dementia

Alzheimer’s Society research suggests the pandemic has had a disproportionate impact on people with dementia and their carers. This must be acknowledged as we recover from the pandemic.

Councils are committed to supporting the recovery from the pandemic. They deliver or commission a huge range of services that can have an impact on people with dementia and their carers: including public health, housing, leisure, planning, licensing, transport, and children’s services. However, councils have lately prioritised adult social care above other services in the face of financial pressures. Additional support is required to do more to support people with dementia to live the lives they want to lead.

We have seen continued interest in local authorities becoming Dementia Friendly Communities or establishing Dementia Action Alliances. The LGA has published and continues to promote a guide for councils on dementia friendly communities.

We must ensure a sufficient supply of suitably designed housing that supports positive ageing. This promotes independence for people living with dementia and reduces the number of people relying on social care and the NHS. Timely adaptations help to keep people in their homes for longer, fit and well and out of hospital. In order to ensure that people with dementia have access to the housing options that are right for them, we need government to give councils the powers and flexibilities needed to deliver more accessible homes for their communities.

Through health and wellbeing boards, councils are uniquely placed to bring health and housing partners together to plan for how best to meet the housing needs of the growing numbers of people living with dementia and their carers.

It is also crucial that the Department of Health and Social Care’s upcoming Dementia Strategy includes proposals to ensure that people with dementia and their families have immediate access to information and advice following a dementia diagnosis, as well as a professional to talk to about any concerns they may have.

Carers

The adult social care system could not survive without the contribution of unpaid carers, who provide vital support for thousands of people every day. Councils fully recognise their crucial role and assess and support hundreds of thousands of carers every year but could do even more with the right resources.

A recent report found that the 2014 Care Act’s strengthening of carers’ rights did not improve their access to support because of council budget pressures. Every part of the care and support sector is under intense pressure due to the pandemic and councils are doing all they can to support carers and those they care for.

Caring can place a real strain on carers – emotionally, physically and financially. COVID-19 has further highlighted the incredibly valuable role played by unpaid carers and the difficult circumstances they face. An estimated 4.5 additional people have become unpaid carers because of the pandemic. This is on top of the 9.1 million unpaid carers already caring before COVID-19 with many juggling their own health and wellbeing issues and employment.

Adult social care funding and long-term reform

Years of significant underfunding, coupled with rising demand and costs for care and support, have combined to push adult social care services to breaking point. This has been exacerbated by the COVID-19 pandemic.

Funding needs to reflect the rapidly increasing number of people with dementia. There are currently around 850,000 people with dementia in the UK, according to Alzheimer’s Society. The number of people with dementia in the UK is forecast to increase to over 1 million by 2021 and over 2 million by 2051.

Our analysis before the 2020 Spending Review showed that adult social care faced a funding gap of £2.2 billion in 2021/22, rising to £2.7 billion in 2023/24. This is just for ‘core pressures’ (demography, inflation and National Living Wage increases) and the provider market gap (the difference between what providers say is the cost of delivering care and what councils pay). This does not take into account the cost of tackling many of the challenges facing social care, such as unmet and under-met need; a lack of funding for prevention; an over-stretched and undervalued workforce; and growing strain on unpaid carers.

The 2020 ADASS Budget Survey shows that the onset of the pandemic, and the additional financial and demand pressures faced by local authorities as a consequence, has led to a significant change in the Directors’ confidence in meeting their statutory duties relating to adult social care. For the current financial year (2020/21) only 4 per cent of Directors are fully confident that their budget will be sufficient to meet their statutory duties; this compares to 35 per cent in 2019/20.

One of the few positives to come out of COVID-19 is that it has put adult social care firmly in the public, political and media spotlight. It has also shone an important light on the tireless work of our invaluable social care workforce who are providing care and support to all who need it in the most challenging of circumstances. This emergency has begun to highlight the essential value of social care in its own right to the wider public and this debate needs to be harnessed as we think about the future of care and support.

The legacy of COVID-19 for social care – and most importantly the people who use social care services – must be a reset, not simply a restart. We need a ‘1948 moment’ for social care; a moment where we collectively aspire to something bigger and better for social care, because we aspire to something bigger and better for us all.

The LGA has published seven principles for reform of adult social care, which charts a way forward for ensuring the very best local care and support in the future, so that people can live their very best life.  More than thirty prominent national organisations have signed up to these principles.

The Government should make the case for increases in national taxation and/or a social care premium with different options for paying in, such as weekly/monthly, on retirement, deferred and paid from a person’s estate.

One of the (many) key issues in taking such a significant step is the framing of the proposal. Too often we hear of the ‘burden of ageing’ or ‘tsunami of support for older people’. This starts from an inherently negative position. If we can portray investment in social care as an investment in us all – as part of our national infrastructure – we stand a better chance of winning public support. What is happening in America under President Biden is interesting to observe.

Risk pooling is particularly important. One of the most fundamental problems of the current funding model for social care, is that the risk of needing care and support – and therefore its cost – is not pooled. Instead, risk and cost fall solely on people with care needs. Some people within this group, such as those living with dementia, may be required to contribute to the cost of their care in line with the financial means test, which can mean they end up having to pay significant amounts.

Social care needs an equivalent risk pooling mechanism as the NHS’; a sharing of the risk and cost of meeting care needs amongst the whole population (on a means-tested basis for a degree of progressivity) to ensure nobody faces catastrophic costs.

Adult social care workforce pay and conditions

One of the LGA’s seven principles for adult social care reform is that the Government should commit to a new deal for the care workforce, comprising action on pay, training and development, career progression and professionalisation, and recognition.

There are on-going recruitment and retention problems highlighted in high vacancy and turnover rates that affect service quality. In addition, many staff have uncertain incomes because of the prevalence of zero-hours contracts. The temporary shifts in these patterns due to COVID-19 have highlighted the need to deal with them permanently. A recent Skills for Care report on ‘the state of the social care market’ found:

  • Pay in adult social care is on average 25 per cent lower than pay in the NHS.
  • The adult social care sector in England still needs to fill around 112,000 job vacancies on any given day.
  • The staff turnover rate of directly employed staff working in the adult social care sector was 30.4 per cent in 2019/20.

The ability to attract and retain staff with the highest skills sets is hampered by poor perceptions of pay and reward and the lack of coherent career structures that allow people to think beyond temporary work in social care. Better pay and reward needs to form part of a package of reforms to transform the sector as set out for example in the recent strategic workforce framework by the LGA, ADASS and Skills for Care. Increased investment in training and development, the use of technology and a focus on the wellbeing of staff will all help to drive improved productivity across the sector alongside improved pay and conditions.

The social care workforce must be developed in a manner equivalent to the NHS as part of a stable, sustainable solution to long-term funding problems and that this must involve “parity of esteem” for social care staff with their NHS colleagues. Any changes to pay and reward must be fully funded by central Government as there is no resource in the sector to meet the demands of this challenge.

The Government should establish an independent process to gather evidence and make recommendations on the level and future determination of social care pay as soon as possible so that planning can begin. The transformation of pay and reward is a complex medium to long-term proposition and will require considerable investment. Moreover, there will be a variety of opinions on the best way to take things forward. An independent process provides the best opportunity to achieve a consensus on outcomes. Other terms and conditions should be looked at as soon as possible.

Contact

Jade Hall, Public Affairs and Campaigns Adviser

[email protected]