Scaffolding Care: Rethinking Infrastructure for Alzheimer’s and Comorbid Conditions in Complex Health Systems

Where memory falters, let kindness remain, A scaffold of care through sorrow and strain, Love holds the mind when the mind cannot name.

Abstract

Alzheimer’s disease (AD), often accompanied by multiple chronic conditions, presents unique systemic challenges that extend beyond pharmacologic treatment. This article critically examines care infrastructure, not merely as a healthcare delivery mechanism but as a dynamic system of policies, people, and services essential to the wellbeing of people living with dementia (PLWD) and comorbid illnesses. Drawing on frameworks such as syndemic theory and complex adaptive systems, the article explores the fragmentation of current services in the UK, the tension between pharmaceutical innovation and diagnostic capacity, and the moral imperative for integrated, equitable, and culturally competent care systems. With reference to NICE’s recent evaluation of disease-modifying treatments and international evidence on care models, this work argues that robust infrastructure, comprising diagnostic equity, carer support, trained personnel, and systemic adaptability, is the true determinant of progress in dementia care.

Introduction and Background

Alzheimer’s disease is the most prevalent form of dementia, accounting for 60-70% of global cases (WHO, 2023). In the UK, nearly one million individuals are currently living with dementia (Alzheimer’s Society, 2023). While significant resources have been invested in disease-modifying therapies such as donanemab and lecanemab, these pharmacological innovations offer modest gains and presuppose functional infrastructure for diagnosis, monitoring, and follow-up (van Dyck et al., 2023; NICE, 2025).

Moreover, dementia is rarely experienced in isolation. The majority of PLWD have one or more chronic comorbidities, including cardiovascular disease, type 2 diabetes, and mental health disorders (Bunn et al., 2014). These layered health burdens demand not just clinical oversight but a web of social, logistical, and emotional support. Understanding and responding to this complexity requires reframing infrastructure as a living scaffold, responsive, inclusive, and centred on the lives it is designed to support.

Theoretical Framework: Syndemics and Complex Care Systems

To effectively interrogate the weaknesses in current dementia care, this study uses syndemic theory and complex adaptive systems thinking. The syndemic model, proposed by Singer and colleagues (2017), describes the interactions between diseases, social conditions, and structural inequalities that mutually reinforce poor outcomes. In the case of AD, syndemic thinking accounts for how poverty, isolation, ethnicity, and comorbidity create a compounded burden, often invisible in siloed health systems.

Simultaneously, complex systems theory highlights how health services behave not as linear delivery pipelines but as adaptive networks, with feedback loops and emergent properties (Plsek & Greenhalgh, 2001). This framework explains why top-down dementia strategies often falter: policies are introduced without adaptive mechanisms to accommodate local variability, professional culture, and patient need. Together, these theories illuminate the ethical and logistical necessity of redesigning care infrastructure to reflect lived realities.

Current Care Infrastructure for Dementia in the UK

The UK’s care infrastructure for dementia reflects both progress and persistent fragmentation. The National Dementia Strategy (Department of Health, 2009) aimed to improve early diagnosis, public awareness, and the quality of care. However, over a decade later, implementation remains uneven. Memory assessment services are centralised in urban areas, while rural and underserved communities face significant diagnostic delays (Giebel et al., 2019). Additionally, funding for dementia-specific services has not kept pace with demand, leading to postcode lotteries in service provision (NHS England, 2022).

Workforce challenges are equally pressing. A 2024 Royal College of Nursing report found that fewer than 40% of nurses working in long-term care had received specialised dementia training (RCN, 2024). Moreover, Integrated Care Systems (ICSs), introduced to align health and social care delivery, have yet to achieve consistent coordination. Fragmented digital infrastructure inhibits seamless communication between primary, secondary, and social care providers (Baxter et al., 2018).

Furthermore, people living with dementia (PLWD) report difficulty navigating services, with post-diagnostic support often limited to brief informational leaflets or outdated referrals (Giebel et al., 2025). These barriers result in poorer outcomes and increased emergency admissions, contributing to system strain (Livingston et al., 2020).

Comorbidity, Inequity, and Fragmentation

Alzheimer’s disease is frequently accompanied by multimorbidity: 66% of PLWD have at least one other chronic illness, and 30% live with three or more (Bunn et al., 2014). Managing overlapping conditions places intense cognitive and logistical demands on individuals, carers, and providers. Treatment pathways often conflict, such as polypharmacy in older adults—while referrals may fall between service silos (Smith et al., 2016). For example, a patient navigating diabetes, arthritis, and Alzheimer’s simultaneously may be bounced between multiple clinics without unified care planning.

Socioeconomic and ethnic disparities exacerbate these challenges. People from Black and Asian communities are statistically less likely to receive timely dementia diagnoses and more likely to experience poor quality care (All-Party Parliamentary Group on Dementia, 2019). Digital exclusion, language barriers, and historical mistrust in institutions further limit engagement (Clarke et al., 2020).

In terms of system-level fragmentation, the separation between health (under the NHS) and social care (managed by local authorities) results in disjointed funding and delivery. Social care remains means-tested, unlike the NHS, creating confusion and inequity for families seeking consistent support (Health Foundation, 2021). As NICE has acknowledged, the infrastructure required to support new treatments such as donanemab and lecanemab is presently insufficient—not because the science is lacking, but because the system is not structurally prepared (NICE, 2025).

Policy Implications and Innovations

Recent policy discourse around dementia has focused on early diagnosis and pharmacological innovation. However, policy without infrastructure is rhetoric without reach. The UK’s 10-Year Plan for Dementia, delayed repeatedly, reflects a lack of urgency (Department of Health and Social Care, 2023). Even when guidance is issued, such as NICE’s conditional endorsement of disease-modifying therapies, implementation is hampered by bottlenecks in diagnostic access, uneven clinical capacity, and the absence of biomarker availability in most general practice settings (NICE, 2025).

Integrated Care Systems (ICSs) were introduced to align local services, yet many struggle with fragmented digital records and disjointed funding between NHS and local authority services (Ham et al., 2021). Internationally, models such as the Netherlands’ DementiaNet and Japan’s Comprehensive Community Care System offer useful paradigms, emphasising community engagement, shared care planning, and interdisciplinary collaboration (Verbeek et al., 2020; Arai et al., 2012). There is also a growing recognition of culturally sensitive care. PLWD from Black and Asian communities continue to be underserved due to stigma, lack of translated materials, and poorly tailored outreach (Clarke et al., 2020). Policy frameworks must reflect these inequities, embedding inclusion as a core tenet rather than an afterthought.

Future Directions: Toward Adaptive and Equitable Infrastructure

Building a responsive infrastructure requires systemic investment and ethical clarity. Key priorities include:

• National Dementia Workforce Strategy: Training across sectors, from GPs to domiciliary carers, to standardise dementia-specific competencies (RCN, 2024).

  
  

• Universal Memory Assessment Access: Establish regional diagnostic hubs with equity mandates, including culturally competent navigators.

  
  

• Co-produced Care Models: Involving PLWD and carers in the design of services to ensure flexibility, respect, and usability (Wilberforce et al., 2018).

  
  

• Technology for Inclusion: Digital tools should enhance, not replace, human care, especially for those facing cognitive, linguistic, or socio-technical barriers (Topol, 2019).

  
  

• Funding Alignment: Unified care budgets across health and social care that incentivise continuity, not crisis response.

  
  

• These shifts demand political will and cross-sector accountability. Without it, the future risks entrenching innovation for a privileged few while the majority continue to face neglect.

Conclusion

Pharmaceutical breakthroughs must not distract from the foundational reality: care is a system, not a pill. Alzheimer’s and its comorbid companions expose the fragility of fragmented models. The path forward is not only to innovate treatments but to imagine and construct an infrastructure where such treatments can land meaningfully. True progress will not be measured by uptake of new drugs, but by the safety, dignity, and inclusion of all people living with dementia, regardless of postcode, diagnosis stage, or cultural identity. Scaffolding care means shaping a system that holds everyone, even when cognition fades.

References

Alzheimer's Society. (2023). Dementia UK: Update. London: Alzheimer's Society.

All-Party Parliamentary Group on Dementia. (2019). Hidden No More: Dementia and Disability.

Arai, H. et al. (2012). Japan's strategy for aging with dignity. The Lancet, 379(9823), 1055–1060.

Banerjee, S. (2019). Multicultural Approaches to Dementia. Jessica Kingsley Publishers.

Baxter, S. et al. (2018). Integrated care models: A review. BMC Health Services Research, 18(1), 350.

Bunn, F. et al. (2014). Comorbidity and dementia: A scoping review. BMC Medicine, 12(1), 192.

Bunn, F. et al. (2021). Improving access to diagnosis and care. British Journal of General Practice, 71(707), e643–e650.

Clarke, C. et al. (2020). Ethnicity and inequalities in dementia care pathways. Health & Social Care in the Community, 28(6), 1984–1992.

Department of Health and Social Care. (2023). People at the Heart of Care: Adult Social Care Reform.

Giebel, C. et al. (2019). Disparities in dementia care. Health & Place, 59, 102200.

Giebel, C. et al. (2025). Challenges of dementia care in the UK. BMJ, 389:r1135.

Ham, C. et al. (2021). Integrated Care Systems in the UK: Challenges and Opportunities. King's Fund.

Health Foundation. (2021). Social Care 360.

NICE. (2025). Technology Appraisal: Donanemab and Lecanemab for Alzheimer’s.

Plsek, P., & Greenhalgh, T. (2001). Complexity science: The challenge of complexity in healthcare. BMJ, 323(7313), 625–628.

Royal College of Nursing (RCN). (2024). Dementia: Professional Resource for Nursing Staff.

Singer, M. et al. (2017). Syndemics: A biosocial framework. The Lancet, 389(10072), 941–950.

Topol, E. (2019). Deep Medicine: How Artificial Intelligence Can Make Healthcare Human Again. Basic Books.

van Dyck, C. H. et al. (2023). Lecanemab in early Alzheimer’s. NEJM, 388(1), 9–21.

Verbeek, H. et al. (2020). DementiaNet in the Netherlands. Aging & Mental Health, 24(4), 564–570.

Wilberforce, M. et al. (2018). Co-producing mental health services for older people. Health & Social Care in the Community, 26(1), 122–130.