Written evidence submitted by Alzheimer’s Society [ASC 065]



Alzheimer's Society is the UK's leading support services and research charity for people with dementia and those who care for them. We represent 850,000 people with dementia in the UK, as well as their carers and wider network of loved ones. People born today have a one in three chance of developing dementia and there are no significant interventions available to prevent the onset of the condition. Our responsibility is to make sure their voices are heard in this discussion and future arrangements meet the needs of all people affected by dementia.

Due to the limited range of clinical interventions available, most people with dementia access support through social care rather than health care. With health care being free at the point of use via the NHS, but social care subject to means-testing, people with dementia face an unfair penalty compared to other health conditions – and even when accessing social care, may face higher fees than people without dementia.

“My Mum, Sylvia spent around £160,000 of her assets on her care... In 1948 the NHS was set up to provide health care from the ‘cradle to the grave’. Why is it that if you have Alzheimer’s you have to fund your own care unless you become seriously incapacitated? As my mother now is. Neither myself nor my sister have an issue with our Mum funding some of her care but spending £160,000 is surely too much? Mum was a telephonist/receptionist and not a rich person. Had we not accessed [NHS Continuing Healthcare] funding almost everything would have gone by now. I think there is an urgent need to fix social care funding once and for all, there have been too many false promises.”

Philip Scott, son of Sylvia aged 92 who lives with Alzheimer’s disease in a care home in Lancaster.

People affected by dementia have been among the worst hit by the Covid-19 pandemic. Dementia was the single most common pre-existing condition in deaths involving Covid-19 and 92% of carers we surveyed said the pandemic accelerated their loved one’s symptoms.

The Covid-19 pandemic has shown the need for reform has never been more pressing. We need to see a bold ten-year vision for social care that delivers personalised care to everyone who draws on it, and a clear People Plan to support the workforce.

Any reform to the system must also consider and deliver improvements to the quality of and access to care, not solely focus on funding mechanisms.

We need to see investment in social care to ensure the 200,000 people with moderate or severe dementia with care needs who receive no formal social care support can access care.

Alzheimer’s Society supports the Care and Support Alliance’s call that “care should be free at the point of use” and “risk must be pooled” among the whole population.

A cap and floor model, such as proposed by the Dilnot Commission in 2011, would limit exposure to extremely high costs by capping lifetime care fees and increasing the ‘floor’ to enable people to keep more of their assets before paying for care. Whether Alzheimer’s Society could endorse such a proposal would depend on where the proposed cap and floor are set, and how many people with dementia would receive support.

Due to the extremely limited funding available to the sector at present, there is little scope for innovative practice and improvement; a dedicated care innovation and improvement fund could support the sector to improve quality and outcomes.

1. Introduction

1.1   Alzheimer's Society is the UK's leading support services and research charity for people with dementia and those who care for them. Dementia is the name for a set of symptoms that includes memory loss and difficulties with thinking, problem-solving or language. Dementia develops when the brain is damaged by diseases, such as Alzheimer’s disease. Alzheimer’s Society runs quality care services, funds research, advises professionals and campaigns for improved health and social care and greater public awareness and understanding of dementia.

1.2   Of the top ten leading causes of death in the UK, dementia is the only one we cannot cure, prevent or even slow down. Social care is essential for many people affected by dementia. For most health conditions treatment is predominantly available free at the point of use through the NHS, however for people with dementia, as the interventions available are non-clinical, support is provided through the means-tested social care system. People with dementia represent at least 70% of care home residents[1] [2] and 60% of homecare recipients[3]. Alzheimer’s Society research has found that dementia care is on average 15% more expensive to deliver than standard social care and care home fees are often higher for people with dementia.[4] This is the Dementia Penalty – the extra cost people with dementia face to cover their needs as a direct result of the health condition they have developed, due to needing more support from the means-tested social care system and the higher fees when accessing the system. It would take over 125 years to save for the typical cost of dementia care of £100,000.[5] Reform of social care must recognise the complex care needs of dementia and the debilitating costs currently being borne by families. People with dementia should have the same right to care as people with other conditions, without excessive, unfair costs due to the health condition they have developed.[6]

1.3   It is projected that there will be increased need in future, with the number of people with dementia increasing to 1.5 million in 2040. The fastest increase is projected in people with severe dementia, whose numbers will double from 510,000 to 1 million.[7] In its present state, the social care system fails to respond to current needs, let alone predicted future demands.

1.4   People affected by dementia have been among the worst hit by the Covid-19 pandemic. Data from the Office of National Statistics for the first wave of March to June 2020 in England and Wales shows dementia was the single most common pre-existing condition in deaths involving Covid-19 with 27.5% of those who died of Covid-19, or 13,840 people, had dementia.[8] This is the most recent data published on pre-existing conditions of people dying of Covid-19. We estimate, based on these trends that there have now been over 34,000 deaths of people living with dementia.[9] Between March and the start of May 2020, the rate of deaths due to dementia was 52.2% higher than expected, compared to the five-year average in England.[10] 5,409 additional ‘excess’ deaths of people with dementia were recorded between 4 January and 10th July, in addition to deaths attributed directly to COVID-19.[11] This is likely driven by deaths due to disruption of the normal care pathway and the stress and impact of lockdown, as well as deaths from Covid-19 being underdiagnosed early in the pandemic.

1.5   Since the pandemic, thousands of people with dementia have seen a deterioration in their symptoms, with evidence suggesting this has been caused by lockdown increasing social isolation, interruptions to health or social care services, and changes to regular routines. [12] In an Alzheimer’s Society survey in March 2021, 92% of informal carers said the pandemic had accelerated their loved one’s dementia symptoms; 28% of family carers said they’d seen an ‘unmanageable decline’ in their loved ones’ health.[13] 

1.6   This perfect storm has piled pressure on loved ones - 76% of family carers whose responsibilities had increased during lockdown said they were providing more and more intensive care because of these worsening symptoms.[14] Based on the number of informal carers in the UK, we estimate that family and friends spent an extra 92 million hours caring for loved ones with dementia in the 20 weeks between the start of lockdown on 23 March and the end of August. In an Alzheimer’s Society survey conducted in August 2020, 95% of carers reported that increased caring responsibilities had an impact on their mental or physical health.[15]

1.7   Covid-19 has struck a sector that was already significantly overstretched and had not received sufficient investment in several years. Central government grants for local authorities have decreased 38% in total, between 2009/10 and 2018/19[16] - significant reductions in their budgets means they have gradually stripped back the care they are able to provide[17] as the number of older people receiving support has decreased from 587,000 in 2015/16 to fewer than 550,000 in 2018/19, despite an increase in the older population of nearly 468,000, despite the year-on-year increase in the number of people with dementia.[18] This has had huge consequences for people with dementia. Too many are being left without support at a time when it could help to prevent their condition deteriorating, and instead are only able to get support at a point of crisis. Healthwatch, with Alzheimer’s Society, found that in 2017/18 only 45% of people with dementia had received a planned annual care review – despite it being a right under the Care Act 2014 - while the rate for people without dementia who had received a planned review was higher, standing at 51%.[19] We know that many people with dementia currently don’t receive any support; approximately 200,000 people with moderate or severe dementia who have care needs do not receive any professional or support.[20]

1.8   The care system seeks to support those individuals who require extra care and support; the underfunding of the system means those individuals have been left without the care and support they need and, further, there has also been the added impact on the 700,000 family carers of people with dementia.[21] Of those 200,000 people without formal social care support, an estimated 60,800 have severe dementia and 93,100 have moderate dementia and receive support from family carers. This creates additional need for assessments and support, but our research in The Fog of Support[22] found that 53% of carers surveyed had not had a carers assessment. 61% of carers say their health has been negatively affected by caring.[23] Family carers would not be as obligated to leave the workforce or reduce their hours to provide care if they can get support; over 112,000 people are no longer in paid employment and over 147,000 have had to reduce their hours or are having difficulty balancing work and care. We estimate this cost English businesses £3.2 billion in 2019 and is projected to grow to £6.3 billion by 2040.[24]

1.9   When the lockdown happened, the care package that we managed to secure for Mom before lockdown – it was three times a day – suddenly disappeared when, understandably, the carers needed to think about their own health. It was so stressful to try and find an alternative. Initially, I was working from home and caring for her, but whenever Mom needed something I had to interrupt my work. I was very clear that that couldn't be sustained for much longer. Eventually, we found someone to return – albeit for only twice a day. Each day I worry if our carer might be unable to continue to care for Mom, leaving us in an unimaginably stressful situation in terms of trying to find an alternative, equally agreeable and sensitive carer.

Enomwoyi cares for her mother, Pearl, who lives with Alzheimer’s disease at her home.


















2         How has Covid-19 changed the landscape for long-term funding reform of the adult social care sector?

Impact of Covid-19 on the quality of care

2.1   Alzheimer’s Society has long highlighted the issues of an unsustainable social care system that has been in need of an urgent overhaul for many years, calling for people affected by dementia to be able to draw on the care they deserve, when they need it, and without unfair cost. These calls pre-date the Covid-19 pandemic, however it has increased the urgency of the situation. Covid-19 has had a clear impact on the quality of, and lack of access to, care, though it will take many years to work out the many and wide ramifications. Many of the key problems in social care before the pandemic have been exacerbated and magnified by the pandemic.[25] The Covid-19 pandemic has further shown the need for comprehensive reform, including personalisation in social care.

2.2   The sheer number of deaths is evidence of the impact Covid-19 has had, especially among care homes, of whom more than 30,000 residents have died of the virus.[26] Many care home residents have been left isolated from their families, many of whom would come to care homes regularly to provide essential care, as 97% of care homes closed entirely to visitors in the first wave of the pandemic.[27] Some people with dementia in care homes have been cut off from their loved ones for almost a year, contributing to a massive, and likely irreversible, deterioration in their health.

2.3   Social contact and interaction with others is a vital element of care for people living with dementia, whether in care homes or in the community.[28] Regular social contact with loved ones not only helps people living with dementia feel secure, but also helps them maintain skills and independence, including basic cognition such as recognising family members, and communication skills like remembering words and following a conversation. Alzheimer’s Society, Dementia UK, John’s Campaign and tide (together in dementia everyday) surveyed 1,001 carers one year on from the pandemic beginning[29]; a third of respondents (31%) reported a significant deterioration in loved ones’ ability to speak and hold a conversation, and a quarter of respondents (25%) reported that their loved ones’ ability to eat by themselves had decreased. When surveyed in June 2020, 79% of care homes told Alzheimer’s Society that the lack of social contact was causing a deterioration in the health and wellbeing of their residents with dementia.[30]

2.4   Care staff provide a vital and complementary, albeit separate, role to family carers. At the same time as restrictions on family carers’ ability to provide care, paid care staff also faced significant pressure. Staff absence rates in care homes increased significantly during peak periods of the pandemic: staff days lost to sickness has risen from 2.7% pre-Covid-19 to 7.5% in March to August 2020[31]. In January 2021, some care home providers reported absence rates as high as 50%. [32].

An unstable system

2.5   Short-term funding has consistently hampered long-term planning and innovation in the care sector.[33] But the Covid-19 pandemic has significantly increased the pressure on providers, local government and the system as a whole. The ADASS budget survey shows more concern than ever over sustainability and ability to meet budgets, with just 4% of Directors of Social Services reported being confident that their budgets were sufficient to meet their statutory duties.[34]

2.6   Providers too may face substantial challenges this year: 7% of Directors of Social Services are concerned about all of their providers and a quarter of Directors of Social Services have concerns about most providers.[35] CQC reports that for care homes that fall within the Market Oversight Scheme (approximately 30% of the total care home sector), occupancy levels were on average 87% prior to the pandemic but reduced by around 10% at the height of the first wave. While average occupancy levels increased since the first lockdown to approximately 80%, care home occupancy remains considerably below normal.[36] Due to the low number of care homes included in the Market Oversight Scheme, occupancy rates may be significantly lower than this estimate. This indicates people who may normally benefit from the dedicated support which residential care can provide are hesitant to access it at present – likely meaning more demand on family carers or domiciliary care services.

A positive vision for social care

2.7   The way people have used social care has changed as a result of the pandemic. This may mean in future we see more complex care delivered in residential care environments, with a much greater emphasis on ensuring people can stay independent in the community for as long as possible, drawing on support from social care to enable them to live well. When organised well, social care can help each of us live in the places we call home, doing what matters to us, with an ecosystem of support and relationships that we can draw on to live our lives the way we choose to, with meaning, purpose and connection. For that to happen, Government must make good social care a priority and provide targeted investment.

2.8   It is clear we need reform. Alzheimer’s Society believes that any proposal for long term reform needs to address these basic principles:
     - Care should be person-centred and include an element of choice.
     - Informal carers should be recognised as an integral part of the care eco-system
     - There must be greater integration between health and social care.
     - There must be a minimum set of national standards.[37]

2.9   Now is the opportunity for reform to set a new vision for social care and to design a new system to deliver on this. Currently social care doesn’t always focus on what matters to people – it can be too transactional, driven by time and task and not enough by connection, purpose or genuine outcomes. Social care should not only focus on the basic personal care that allows for daily functioning – while it is essential, this basic personal care alone will not give people a good quality of life, which everyone should have the right to. The central principle of social care must be that it focuses on what matters to people so that it:

     - Offers people choice and control, responds to changing needs, actively seeks feedback and encourages and supports people to maintain their independence.

     - Supports the individual with choosing and setting their own goals and working with qualified care workers to plan how social care will support them in meeting that goal.

     - Recognises the importance of relationships to health and wellbeing – as all care plans should – including building or strengthening relationships with loved ones, family members or people in their community as a focus.

     - Improves people’s experience of ‘living well’, grounded in research. Research suggests that for people with dementia this should include measures of psychological factors, including optimism, self-esteem, loneliness and depression.[38]


2.10           Alzheimer’s Society supports the Care and Support Alliance’s call[39] that “care should be free at the point of use. A universal free care system would end the unfair higher costs that people affected by dementia face, characterised as the Dementia Penalty. A universal offer of social care would ensure people with dementia receive the care they need, when they need it – this would also benefit family carers, reducing negative impacts on their own health. It would best align structures and break down barriers between social care and health care, encouraging a preventative approach, saving the NHS and wider economy money with people incentivised to access care before reaching crisis point. We believe such a policy would receive substantial public support as it would be clearer, more transparent and dismantle many of the barriers to good quality care that currently exist.

2.11           Until the point of need, there is a widespread assumption that dementia care is available for free, as with care for other conditions. Despite being a health condition, a set of symptoms caused by diseases that damage the brain, the needs people develop are often best supported by services we usually consider to be part of social care – as a result, people are receiving support for their health condition from the means-tested social care service, not the health service which is free at the point of use. In our 2018 survey of the public, half of respondents incorrectly believed the costs of dementia care are covered by the NHS. In reality, they would pay these costs themselves. Eight in ten people don’t know the typical cost of care.[40]

2.12           A cap and floor model, such as proposed by the Dilnot Commission in 2011, would limit exposure to extremely high costs by capping lifetime care fees. These are a significant issue for people affected by dementia, who can risk spending everything they have on care. However, it could risk being bureaucratic and may fail to recognise the true cost of care should a cap not cover top up fees nor the higher fees for people with dementia. If the only costs that count towards the cap are based on local authority rates, this would not reflect the reality that care providers charge self-funders higher rates and many such people pay top ups. Around 41% of care home users are self-funders – the average cost for a self-funder in 2016 was estimated by the Competition and Markets Authority to be £846, far higher than the average of £621 for those with local authority funded places.[41] If the system of accruing towards the cap fails to reflect the full cost, it will result in additional sums being paid and an increased risk of having to sell your home to pay for care. There is also a potential for ‘moral hazard’: people could be encouraged to spend more to reach the cap faster, and it may also deter people from saving for care to fall below the floor. If means testing is broadened to include house value for domiciliary care, it may act as a disincentive for people to receive care in their own homes.[42]

2.13           Whether Alzheimer’s Society could endorse such a proposal would depend on where the proposed cap and floor are set, and how many people with dementia would receive supportA cap and floor would need to operate in conjunction with providing support for the additional costs of complex dementia care that exist above and beyond what a cap measures. Furthermore, a cap and floor would not be sufficient on its own. It is important that reforms not only consider funding, but also improving the quality of care that people receive. Due to reasons such as a lack of dementia-specific training for hard-working care staff, and the disconnect remaining between the NHS and social care, the social care system struggles to provide the high-quality, person-centred dementia care that people deserve. Reforming social care must result in improved outcomes for people affected by dementia. 

2.14           “Two years ago, I had to surrender my NHS hospital consultant husband to a care home. He was at that time 67 and has Alzheimer’s disease. Almost wordless, doubly incontinent, with little concept of time and space, we’ve been told he doesn't qualify for care from NHS care, even though he now suffers from regular seizures, as well. If anyone reading this could see him, they would know instantly, like I do, that this is not the case.

“His care costs £1,000 per week. It is eye-wateringly expensive but represents good value for money, given his needs and the quality of care he receives. His savings have been diminished by these charges and the local authority now helps out, but we are still paying £650 per week for his care. This could go on for years. I have no idea what the final costs of his care might be. It is bad luck to have the one disease the NHS doesn’t consider its responsibility. People living with dementia, deserve better.”

Deborah Gray, 62, lives in Wiltshire. Her husband, Atherton, worked all his professional life as a haematologist, for many years at Great Western Hospital in Swindon, where he rose to the rank of Assistant Medical Director before retiring due to young onset Alzheimer’s Disease. He was also a poet and his poetry group are currently compiling a book of his poems.


Supporting our social care workforce

2.15           One way to ensure improvements in outcomes is by training and enabling our social care staff. Reform for quality of care cannot happen without reform of the way we support staff and plan for the future demands on our workforce. Care staff need to be valued for the work they do, to be given the freedom to innovate and have their own wellbeing nourished in order to support others. Additionally, the social care sector is facing huge numbers of staff vacancies, which currently total around 112,000 (a 7.3% vacancy rate)[43]. Given the impact of the Covid-19 pandemic on the wellbeing of staff, this number may well grow. Almost 7% of social care staff hold EU nationality and may choose to return to Europe post-Brexit, which could further increase pressures on the sector[44]. If the number of people requiring support from social care increases in line with population growth, and the level of provision of care remains the same, then 32% (520,000) more jobs will be needed by 2035[45]. Annual turnover rate is also high: for care workers it is 38.1%[46]. The sector needs to transform if it wants to attract staff to fill vacancies and reduce turnover.

2.16           Government needs to work with staff and other stakeholders across the sector to develop and publish a People Plan for social care, including mandating minimum levels of evidence-based skills development and training in personalised dementia care for every care worker and providing the funding for this training to providers to deliver. For example, the NIDUS (New Interventions for Independence in Dementia) study[47] [a] which has developed a training programme for homecare workers supporting people with dementia and the WHELD (Wellbeing and Health for people with Dementia) [48] [b] programme which developed a training programme for care home staff involving training in person-centred care, reviewing antipsychotic medication, social interaction and exercise. These should be considered for rolling out to all social care staff, as the evidence base develops

2.17           Such a People Plan should also look to introduce a defined framework of career progression for care staff, tied to increasing training and development, and increasing pay levels, appropriate for the skilled and valued work that staff do and designed to properly support staff and reduce turnover; Including in this framework appropriate training and support for roles in leadership; and ensure plans enshrine parity of the social care and NHS workforces. This framework should support staff moving between social care and the NHS.

2.18           The public want and expect reform. Following a commitment to reform social care from the Government, polling from November 2020 indicates 68% of people would view a failure to deliver a social care funding solution by 2024 as a breach of trust.[49] In addition to this, there is support for increased investment, with 61% believing current funding is below what is needed and 53% wanting to see an increase.[50] It is clear that there is an appetite and expectation for reform.

3         How should additional funds for the adult social care sector be raised?

3.1   Alzheimer’s Society supports the Care and Support Alliance’s call that “risk must be pooled on a compulsory whole (adult) population basis, funded through taxation”.[51] People born today have a one in three chance of developing the condition, meaning the chances of needing dementia support demand a care system that recognises and protects against that risk. Alzheimer’s Society would support a model of social insurance as this could end catastrophic costs and enable the provision of high quality and affordable care in the future. Such a system would guarantee that people with dementia are no longer disadvantaged because of their need for social care support. Anyone may develop dementia and all of us may require support from social care to help us lead the lives we want to live. With a growing older population it is vital seeds are planted now for a new way of approaching care for future generations. We believe this is a concept that needs to be further explored through future proposals for care reform, with consideration of similar systems in other nations such as Japan and Germany. It is key that, whichever the mechanism for taxation, risk is pooled across society to prevent individual catastrophic costs.

4         How can the adult social care market be stabilised?

4.1   As detailed previously, the social care sector is stretched, almost to breaking point, and needs investment. One-off funding initiatives and one-year spending reviews have left local government unable to properly plan for care costs beyond the current year.[52]  The Local Government Association indicate a further £2.6 billion will be needed to cover the cost pressures and non-tax income losses due to Covid-19 in 2020/21.[53] Such an immediate injection would go some way to stabilise the system from the impact of 2020.

4.2   To actually improve the quality of care, we need the Government to set out a robust vision for delivering personalised care for people with dementia and everyone who may draw on social care, with appropriate accountability in order to uphold the ideals of the Wellbeing Principle held in the Care Act. Any potential Green Paper on social care reform must ensure reforms consider not just funding, but also improving the quality of care that people receive. We need a clear ten year plan for social care that has as its goal supporting people to live well, and then invest in the system to meet that vision. A firm amount is not possible without that plan, as any long-term settlement will be dependent on the future shape of social care reform. To offer a sense of the scale of the need for investment, the Health Foundation[54] has provided estimates for the ‘social care funding gap’. By next year (2022/23) meeting demand will require an additional £1.5 bn – whereas to start to improve the sector by meeting demand, improving access to care, and increasing council budgets to improve the quality of provision by paying more for the care commissioned is more in line with £7.9 billion.

4.3   The National Audit Office latest report[55] reflects that the Department of Health and Social Care acknowledges that most local authorities pay care providers below a sustainable rate. This is likely due to decreases in local government funding and the drive to use local government’s purchasing power to reduce costs. This has unintentionally led to some of the key challenges in the care sector where providers are operating on razor thin margins which impacts the stability in the sector, as illustrated by ADASS’ regular budget surveys, and are recouping costs from self-funders. As NAO notes, the Competition & Markets Authority reported in 2017 that in the UK if local authorities were to pay the full cost of care for all care home residents they fund, it would cost £1 billion per year. This has led to councils tightening criteria and limiting the support they offer people with moderate needs – the Local Government and Social Care Ombudsman has “found councils at fault for raising eligibility thresholds to qualify for services, particularly in adult social care, as a means to save money. Instead of starting by assessing needs, developing a care plan and then meeting eligible needs, councils have made resource-led decisions, sometimes missing out the care plan stage altogether.”[56] This is unacceptable, and a symptom of an underfunded care system.

4.4   Covid-19 has starkly demonstrated how much we don’t know about what’s happening in our social care services, including the basics. NHS Digital has recently collated several data sources in social care and illustrated the ‘gaps in data and insight’ such as levels of unmet need, informal care, self-funders and part-funders, data on providers, limited data on outcomes and quality of care, limited data on seldom listened to cohorts and pathways of integrated care.[57] Until NHSE required use of the Capacity Tracker and CQC’s establishing returns for domiciliary care during the pandemic, we had a very limited picture of what happens nationally – and locally, ADASS notes[58] that 72% of DASSs disagree or strongly disagree that national sitreps record sufficient information to manage the local care market. It is no wonder that councils cannot sufficiently manage their local markets without the requisite data.

4.5   We welcome the proposed new powers from the White Paper: Integration and Innovation for CQC to assess whether local authorities are failing to meet their duties under the Care Act, and for providers to present data on their care to provide a more complete overview of the national and local picture. We look forward to seeing these develop. The increasing role of Integrated Care Systems in sharing resources and understanding on a wider footprint could lead to benefits in some areas to support and enhance councils’ current responsibility to shape and stabilise markets.

4.6   “Lesley and I were married in 1975. As Lesley was diagnosed with young onset Alzheimer's in 2012 she was admitted to a nursing home in 2014. Up until March 2020 I visited her every day. Because of the virus the home was closed to all visitors which was devastating. As time progressed efforts were made for visits but from a distance which were not beneficial for either of us. It has been unbearable not to be able to spend meaningful time with Lesley. In April 2021 the home allowed a family member to visit a resident in their room to help with their wellbeing. It has been immensely gratifying and beneficial to have real time with each other rather than just a quick visit from a distance.”

John Amos is married to Lesley, who is living with young onset Alzheimer’s in a care home



































5         How can the adult social care market be incentivised to compete on quality and/or innovation?

5.1   As seen during the Covid-19 pandemic, due to financial, staffing and structural limitations, the care system is poorly equipped to prepare for, or deal with, substantial shocks when they happen. We know that substantial investment will need to be made in the care sector to equip it for future epidemics, and to build resilience.

5.2   There is a wealth of innovative practice in the field and research that exists on improving care. Alzheimer’s Society is the UK’s biggest funder of dementia care research and part of this unique work has included the launch of a new Care Research and Technology Programme at the UK Dementia Research Institute.[59] Alzheimer’s Society has been using its position as a founding partner of the UK DRI to ensure that, as well as developing treatments, we can also improve the lives of people living with dementia today through care, technology and public health research. The centre brings engineers, doctors and researchers together with people affected by dementia to use technology such as artificial intelligence, robotics and wearable sensors to see how dementia-friendly homes could help people with the condition to live well at home for longer. There are also existing networks which provide learnings of innovative practice which require funding to share findings more widely, such as the Department of Health and Social Care funded Social Care Institute for Excellence (SCIE), Think Local Act Personal (TLAP) and Shared Lives Plus’ Social Care Innovation Network.[60]

5.3   A dedicated care innovation and improvement fund could be established to enable the implementation and testing of pilot products and services to deliver quality care, with effective evaluation. This could specifically be used to address issues such as maintaining social connection, improving use of wellbeing assistance, implementing digital services and novel infection control equipment and the like that have been such a challenge during the Covid-19 pandemic.

5.4   As research develops in these areas, an innovation and improvement fund could be used to test such approaches on the frontline. The fund could be opened to applications from UK-registered care providers, with applications assessed by a range of experts, including those with lived experience. Precedence for innovation funds already exist across social care,[c] but none are currently available to care home and domiciliary care providers.



April 2021











[a] Following a systematic review, NIDUS found a recurring theme of the importance of supporting independence. A key part of the model is relationships: approaches should be relationship-focused, developing a strong relationship between the carer and the person with dementia; and social connections of the person with dementia (to loved ones, family members, and others in the community) should be valued. NIDUS is now piloting their training and future results will show its effectiveness in improving quality of life and whether it is feasible for wider roll out.

[b] WHELD research found that increasing social interaction improves the wellbeing of people living with dementia in care homes, based on a programme of daily interaction from trained staff in conjunction with personalised care planning. The study found that 10 minutes of social interaction a day helps to improve wellbeing, and continued to be demonstrated in terms of positive outcomes for several months post study, in care homes which had previously only been providing an average of 2 minutes of social interaction per day. The programme has delivered benefits including a significant improvement in quality of life; reduced mortality; reduced agitation and overall neuropsychiatric symptoms; reduced use of anti-psychotics; fewer emergency and routine hospital admissions and GP visits; and cost savings of up to £2,000 for each care home over the 9-month study, after taking into account the cost of delivering WHELD.

[c] Such funds include the Social Care Digital Innovation Programme from LGA and NHS Digital (www.local.gov.uk/oursupport/our-improvement-offer/care-and-health-improvement/informatics/local-investment-programme ); and the DHSC Carers Innovation Fund (www.gov.uk/government/publications/carers-innovation-fund-how-to-apply/carers-innovation-fund-how-toapply). The Workforce Development Fund (www.skillsforcare.org.uk/Learning-development/Funding/Workforce-Development-

Fund/Workforce-Development-Fund.aspx ) and the former Workforce Development Innovation Fund


fund.aspx ) are available to providers but are specifically tied to training staff to increase their skills and knowledge.

[1] Wittenberg, R. et al (2019) “The costs of dementia in England”, International Journal of Geriatric Psychiatry, vol. 34, Issue 7,

available online at: https://onlinelibrary.wiley.com/doi/full/10.1002/gps.5113

[2] Livingston, G et al (2017) “Prevalence of and Associations With Agitation in Residents with Dementia Living in Care Homes: MARQUE Cross-Sectional Study”, BJPsych, 2017 Jul, https://pubmed.ncbi.nlm.nih.gov/28794896/

[3] UKHCA (2015) Dementia and Homecare: Driving Quality and Innovation. Available at:


[4] Alzheimer’s Society (2019) The Case For The Dementia Fund, Available at: www.alzheimers.org.uk/sites/default/files/2019-


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