Written evidence submitted by Dr Gary Christopher (ASC0024)

Successive governments have presented reform ideas for adult social care, yet few of these have been implemented. This inquiry seeks to understand what this inaction is costing. We will investigate the cost of inaction to individuals, the NHS, local authorities and also to the wider economy and HM Treasury, focussing not only on the financial cost, but also on the personal costs and on potential benefits that are being missed. The inquiry will consider social care for both older and working age adults.

Who Am I?

I am Dr Gary Christopher, a Senior Lecturer at the Centre for Ageing and Dementia Research at Swansea University[1]. My work focuses on the emotional and psychological challenges of ageing and dementia, particularly through person-centred interventions that enhance quality of life for individuals and caregivers. I have authored books and researched dementia, depression, resilience, and healthy ageing, aiming to bridge academic insights with practical applications[2].

I am submitting evidence to this inquiry because I believe the adult social care system is unsustainable and needs reform to meet the needs of vulnerable individuals. Drawing on my research and wider experience, including recently being a carer for someone with Alzheimer’s disease, I highlight the importance of comprehensive support, innovative interventions, and equitable, person-centred care, as reform is essential for improving lives and addressing systemic inefficiencies.

Evidence

The lack of comprehensive reform in adult social care seriously affects the National Health Service (NHS) and local authorities responsible for providing public health and social care services. These consequences include a rise in untreated health problems, greater financial strain, and diminished efficiency throughout the system.

Impact of Inaction on the NHS and Local Authorities

Escalation of Health Issues

A significant and immediate consequence of insufficient social care is the escalation of both physical and mental health issues in at-risk populations. Social care aims to assist individuals in preserving their independence and quality of life by meeting non-medical needs, which include support with daily tasks, social interaction, and ensuring safe living conditions. The lack of timely social care interventions leads to the following.

Delayed Detection and Intervention

Social care providers are in a crucial position to notice early indicators of declining health, such as alterations in mobility, nutrition, or cognitive function. When these services are underfunded or hard to access, chances for early intervention are lost, permitting minor concerns to develop into significant medical emergencies[3]. For instance, a frail older adult who lacks assistance with meal preparation or medication management may experience malnutrition, dehydration, or falls, frequently resulting in emergency hospital visits[4].

Increased Emergency Admissions

Without sufficient social care, older adults and those with chronic conditions often rely on emergency medical services for avoidable issues. Proactive social support, like help with medication management or mobility, could greatly decrease these unnecessary hospitalizations[5]. However, data consistently indicate that individuals lacking adequate home support are more prone to acute health crises, further burdening NHS resources.

Mental Health Deterioration

Insufficient social care negatively impacts mental health, especially in older adults, those with disabilities, and unpaid caregivers. Prolonged isolation, unfulfilled emotional needs, and inadequate practical support lead to higher instances of anxiety, depression, and cognitive decline[6]. These mental health issues diminish individuals’ quality of life and elevate the demand for NHS mental health services.

Extended Hospital Stays

Numerous patients, particularly older individuals or those recovering from surgery, cannot be safely discharged from the hospital without sufficient home support. This situation results in "bed-blocking" (officially known as delayed transfers of care), where patients stay in the hospital longer than required. These delays utilize valuable NHS resources and diminish hospital capacity, worsening overcrowding and extending waiting times for other patients[7], as well as leading to physical deconditioning, a decline in function due to prolonged inactivity.

Long-Term Costs and Resource Strain

The financial strain of managing preventable health issues stemming from insufficient social care is significant. For example, the NHS spends over £2 billion each year on treating hip fractures resulting from avoidable falls, much of which could be mitigated through basic home adjustments or caregiver assistance[8],[9]. Likewise, emergency hospitalizations for malnutrition or dehydration in older individuals lead to considerable yet avoidable costs for healthcare systems[10].

Post-Diagnostic Support Deficiencies

Post-diagnostic support encompasses a variety of services, resources, and interventions offered to individuals after receiving a diagnosis of a health issue, including cognitive impairments or dementia. This support is essential for assisting individuals and their families in managing the diagnosis, maintaining a quality life, and adjusting to evolving situations. Nonetheless, substantial shortcomings in post-diagnostic support for those with mild cognitive impairment (MCI) and dementia are apparent, leading to significant repercussions.

Insufficient Emotional and Physical Support

Cognitive impairments affect memory and reasoning. MCI indicates noticeable but not disruptive decline, while dementia severely impairs independent living[11]. Following a diagnosis, individuals often lack organized support systems for their emotional and physical needs.

People diagnosed with MCI or dementia frequently experience shock, fear, anxiety, depression, and social isolation[12],[13]. Counselling services are often unavailable, leaving families unsupported. A significant lack of culturally specific emotional support also intensifies existing disparities.

Practical support systems for daily living and future planning are inadequate. Many struggle to access necessary services like occupational therapy and memory aids. Furthermore, guidance on managing symptoms and obtaining financial or legal advice is often poorly communicated[14].

Impact on Quality of Life

The lack of post-diagnostic support affects individuals' quality of life, making it harder to maintain independence and increasing reliance on formal care. Family members often face unmet needs, jeopardizing their mental health and finances[15],[16]. Individuals with dementia may withdraw from social interactions due to stigma or logistical issues, leading to loneliness and quicker cognitive decline.

Strain on Healthcare Services

Inadequate post-diagnostic support burdens healthcare services with preventable hospital admissions due to unresolved issues like falls and infections. Without effective symptom management at home, individuals may enter residential care sooner, increasing resource pressure.

Why Post-Diagnostic Support Matters

Comprehensive post-diagnostic support is a compassionate approach for those with cognitive impairments and a cost-effective strategy that enhances well-being and eases pressure on healthcare systems.

Awareness and Accessibility

Awareness and accessibility are essential for an effective adult social care system, especially for individuals with dementia and their families. Many remain unaware of their entitlements, leading to inequitable access and preventable hardships.

Unawareness of Available Services

The UK social care system is often fragmented and difficult to navigate. This complexity can deter individuals from seeking support and create confusion about eligibility and available services[17],[18]. For families living with dementia, this often means a lack of clear guidance post-diagnosis, leaving them without a roadmap to care.

Stigma and Misconceptions
The stigma surrounding dementia and ageing can hinder engagement with social care services. Families may delay seeking help due to fears of judgment[19], viewing dementia care as solely medical rather than encompassing emotional and practical support.

Barriers to Accessibility

Current signposting mechanisms are insufficient, with GPs often lacking the resources to guide families effectively[20]. Online resources can be overly technical, alienating those with limited digital skills. Location-based disparities, or the 'postcode lottery,' leave many areas underserved[21]. Language barriers and culturally inappropriate services disproportionately affect minority communities[22],[23].

Regional Inequities

Regional inequities in adult social care refer to significant disparities in the availability, quality, and accessibility of services across different areas, leading to unequal outcomes for individuals based on their location. While some regions offer exemplary care, others struggle to meet basic standards, highlighting the need for standardized, equitable care.

Extent of Regional Disparities

Some areas provide well-funded, comprehensive support services, while neighbouring regions may offer minimal care due to funding or workforce shortages. The lack of benchmarks perpetuates a "postcode lottery."[24] High living costs and insufficient training opportunities hinder staffing, particularly in rural areas, while urban centres face high turnover rates.

Impact of Regional Inequities

Individuals in underperforming areas struggle to access essential services, increasing reliance on untrained family caregivers and worsening health outcomes. Geographic disparities in care exacerbate broader social inequalities, negatively affecting health outcomes, quality of life, and financial stability, especially for vulnerable groups[25].

Economic Impact on Families

The economic impact of inadequate adult social care significantly affects service users and their families. Informal caregiving—unpaid care by family members—is a crucial part of the UK’s social care system. However, this reliance often comes with substantial personal and societal costs, as caregivers frequently sacrifice employment opportunities and financial stability.

Lost Income and Financial Strain

Many family members, especially women, reduce working hours or leave jobs to care for relatives. Approximately one in four carers has reduced their hours, and one in five has left their job due to caregiving duties[26]. This loss of income leads to heightened financial insecurity, often requiring reliance on savings or debt[27].

Long-Term Financial Implications

The financial sacrifices during caregiving have long-term effects, including reduced pension contributions and interrupted career progression, leaving many carers, particularly women, vulnerable later in life.

Health and Well-Being Costs

Financial stress exacerbates the emotional and physical toll on carers, leading to increased anxiety, depression, and health deterioration, which further impacts their ability to work[28].

Wider Economic Implications

Losing informal carers reduces workforce participation, affecting national productivity and tax revenue. Moreover, financially strained families often resort to public assistance, increasing demand for already stretched public services and highlighting systemic inefficiencies in social care provision.

Overreliance on Charitable Organizations

Charitable organizations are crucial in the UK's social care system, often filling gaps left by inadequate government services. However, excessive reliance on these charities is unsustainable and highlights the need for reform.

Charities provide essential services often underfunded by local authorities, such as dementia support from community-based programmes. Many services depend on unpaid volunteers, which introduces fragility and unfairly burdens communities without guaranteed government support[29]. Charities frequently handle crises, like providing interim care for hospital discharges, which ideally should be managed by statutory services[30].

Charitable organizations rely on donations and grants, making them vulnerable to economic fluctuations. Funding shortfalls can lead to service closures, particularly during downturns[31]. Access to charitable services varies significantly, with urban areas typically having more resources than rural or deprived regions, creating a "patchwork" care system[32]. While many charities provide quality care, lacking universal standards can lead to variable care quality and challenges in integrating services with statutory health systems[33].

Equity, Diversity, and Inclusion (EDI)

Equity, Diversity, and Inclusion (EDI) are crucial in adult social care services, ensuring fair access and accommodating diverse needs as outlined in the Equality Act 2010. A proactive approach is necessary to address disparities and ensure services are accessible and culturally competent.

Lack of cultural awareness can hinder care, exemplified by language barriers and stigma surrounding conditions like dementia[34]. Ethnic minorities and LGBTQ+ individuals often experience underrepresentation and discrimination in access to services[35],[36]. Many services do not accommodate physical or sensory disabilities, lacking necessary adaptations and accessible information[37]. Those with intersecting identities, such as older ethnic minorities or LGBTQ+ individuals with disabilities, encounter compounded challenges, necessitating tailored approaches. Upholding EDI in social care is not only a legal requirement under the Equality Act 2010 but also vital for public trust and the ethical integrity of the system, fostering a fair society.

Psychological Impact on Patients

The availability and quality of support significantly impact the psychological well-being of individuals requiring social care. Insufficient care not only heightens practical challenges but also leads to emotional and psychological issues, especially among older adults, who may feel like a burden on their families or society. This internalized stigma can reduce self-esteem and contribute to poorer health outcomes.

Many older adults develop a sense of being a burden due to reliance on family members for care, often at a high personal cost to the caregivers[38]. Additionally, internalized ageism—adopting negative stereotypes about ageing—can diminish self-worth and discourage individuals from seeking help[39]. This internalized stigma correlates with higher risks of depression and anxiety[40].

The psychological strain from inadequate social care leads to various health issues. Chronic stress and isolation can weaken the immune system and exacerbate existing conditions[41]. This creates a negative feedback loop where caregiver burnout reinforces feelings of guilt in those needing care, prompting them to withdraw from services and contributing to poor health outcomes. Ultimately, this cycle increases reliance on emergency healthcare, placing additional strain on the NHS[42].

Promotion of ‘Ageing in Place’

Ageing in place allows individuals to live independently in their homes and communities as they age, with necessary support and services. This approach is vital in social care, reducing hospital admissions and premature care home placements.

Benefits

Familiar surroundings boost emotional well-being, reduce depression, and support cognitive health[43]. Proactive care prevents hospital admissions and allows faster discharges[44]. Ageing in place is more affordable than residential care, which can exceed £50,000 annually[45].

Barriers to Ageing in Place

Workforce shortages and funding issues result in long wait times and inadequate support. A lack of tailored services for individuals with complex needs, such as dementia, exacerbates the problem[46]. Over a third of older adults live in housing that fails to meet basic accessibility standards, such as step-free entry or appropriately sized doorways[47]. Lower-income individuals struggle to afford care or modifications, facing geographic disparities in available services.

Service Reforms Hindered by Social Care Pressures

The significant strain on adult social care systems limits the ability to implement critical service reforms, particularly in areas requiring ongoing and coordinated support. One of the most severely affected areas is post-diagnostic dementia support, which remains fragmented and underfunded. This lack of comprehensive care from diagnosis to end-of-life leaves individuals and families without the necessary guidance, assistance, or continuity of care.

Post-Diagnostic Dementia Support: A Gap in Care

Despite its importance, support for dementia patients is often inconsistent and lacking. Many receive no structured guidance post-diagnosis, and existing services are poorly coordinated. Cultural and geographic barriers exacerbate these issues, especially for minority and rural populations[48].

Without comprehensive support, individuals may face accelerated cognitive decline and isolation, while families experience increased strain, leading to burnout and mental health challenges[49].

Adult social care is underfunded, focusing on crisis management rather than preventative care[50]. A lack of trained professionals hinders consistent support delivery. Poor coordination between health and social care leads to gaps in integrated support, which is essential for dementia care[51].

Cost of Inaction to Individuals and Potential Benefits of Reform

The lack of meaningful reform in adult social care has severe consequences for individuals relying on these services, leading to emotional, psychological, and physical challenges. Inaction fosters feelings of neglect and isolation, while comprehensive reforms can enhance well-being and restore dignity.

Emotional and Psychological Impact

When social care systems fail, individuals often feel helpless and fearful about their future, worried about health declines and care costs[52]. This neglect can lead to social withdrawal, particularly among older adults and those with disabilities, exacerbating loneliness and cognitive decline, especially in conditions like dementia[53].

Impact on Informal Carers

Families and informal carers face significant stress and burnout due to unmet care needs. Many feel overwhelmed, affecting their mental and physical health and creating a cycle of strain that impacts both carers and those they support[54].

The Case for Change

Failing to fully account for the costs of inaction perpetuates inefficiencies and inequities in the social care system. Comprehensive evaluations integrating financial, social, and economic considerations are essential for fostering informed decision-making. By prioritizing these assessments, the government can ensure that future policies address the root causes of systemic issues, delivering sustainable and equitable solutions for all.

Addressing the Current Crisis in Adult Social Care: The Role of Research and Innovation

The challenges facing adult social care are clear and urgent. While systemic reforms are necessary, we already know enough to make meaningful improvements today. Evidence-based approaches, informed by research and innovative practices, can immediately enhance the lives of individuals and families who rely on these services.

Investing in Social Care Research

Greater investment in social care research is essential to ensure equitable, efficient, and effective services. Understanding what works, for whom, and in what contexts is critical for delivering services that are inclusive and responsive to diverse needs. Research into person-centred approaches, culturally competent care, and innovative interventions can provide a robust evidence base to guide policy and practice.

Shifting Focus in Dementia Funding

In dementia care, most funding is allocated to biomedical research to find cures. While these efforts are vital, they offer little to those currently living with dementia or their caregivers. A more balanced approach is needed—one that allocates funding to improve the quality of life for individuals today. This shift would ensure that people living with dementia receive the support they need to navigate their condition with dignity and emotional well-being.

Contributing to Solutions for Today

There is a wealth of research available that can improve lives today. As one example, my research addresses immediate needs by focusing on the emotional aspects of ageing and dementia and developing interventions that enhance the quality of life.

I am working on developing nostalgia-based apps and tailored memory tools co-produced with individuals living with dementia and their caregivers[55],[56]These practical and cost-effective solutions tackle emotional and relational challenges, foster social connections, enhance emotional well-being, and help maintain a sense of identity.

My research emphasizes collaboration and co-production in designing user-friendly, culturally sensitive interventions that adapt to diverse needs[57]. This ensures that services are both practical and equitable. I explore how dementia impacts emotional regulation and identity[58]. This work provides insights into designing care practices that directly address these challenges, helping individuals and their families navigate this journey with resilience.

My research on digital health literacy[59] offers insights into practical solutions for supporting ageing in place. By leveraging accessible, person-centred technologies, older adults can maintain autonomy and stay connected to their communities, reducing reliance on institutional care. These tools support sustainable ageing-in-place strategies.

Immediate Solutions

Addressing immediate needs is separate from the importance of systemic reforms or long-term scientific advances. Instead, it complements them, ensuring that the current generation is not left behind while we wait for future breakthroughs. Research conducted by my colleagues and me provides actionable and scalable solutions that can be integrated into today's social care frameworks, demonstrating that we have the tools to create a meaningful difference.

Conclusion

Inaction on adult social care reform continues to impose profound and far-reaching consequences across society, affecting individuals, families, public services, and the broader economy. The absence of meaningful reform perpetuates inefficiencies, exacerbates inequalities, and undermines the well-being of some of our communities' most vulnerable members.

Innovative approaches to social care reform must address individuals' physical, emotional, and psychological needs. Such approaches demonstrate the potential of combining evidence-based strategies with technology to create compassionate, effective, and sustainable care systems

Ensuring dignity and fairness in access to care reflects the values of a compassionate society. Delays will only increase human, social, and economic costs.

By committing to reform, the government can:

• restore public confidence in social care,
• enhance the well-being of millions, and
• reduce strain on the NHS and local authorities.

Meaningful reform is essential for creating a society that values and supports all its members.