Written evidence submitted by Alzheimer’s Society (CBP0026)

Key points:

-          The 850, 000 people living with dementia in the UK have been worst hit by the pandemic. In the first wave, over a quarter of all COVID-19 deaths in England and Wales were people living with dementia[1] and the biggest increase in excess deaths was also in people with dementia.[2]

-          For those who survived, the impact of the ‘lockdown’ measures introduced to contain the virus have been severe and many people with dementia have seen their condition deteriorate at a faster rate over the course of the pandemic. 

-          An Alzheimer’s Society survey in mid-2020 on the effects of lockdown found that 82% of people affected by dementia reported significant deterioration of symptoms in loved ones. Of those who had seen a decline, around half reported increased memory loss (50%) and difficulty concentrating (48%).[3]

-          Diagnosis rates for dementia have plummeted. Before the pandemic, the national diagnosis rate stood at 67.6% (February 2020) but dropped significantly to 61.1% (February 2021).[4] This means more people are living without a diagnosis and are unable to access specialist post-diagnostic support.

-          As we emerge from the pandemic, there will be an increased need for rehabilitation services for people with dementia. People living with dementia must be able to access rehabilitation services to enable them to prevent further deterioration and/or help them to manage with the skills they have left. However, even prior to the pandemic, the NHS struggled to sufficiently provide rehabilitation support to people; this must be addressed.

1. Introduction

1.1.   Alzheimer's Society is the leading support services and research charity for the 850,000 people in the UK with dementia, as well as those who care for them. Working across England, Wales and Northern Ireland, Alzheimer’s Society provides direct services and information to people affected by dementia, funds research and campaigns for change. The number of people with dementia is set to rise to over 1 million by 2025.

1.2.   People living with dementia have been worst hit by the COVID-19 pandemic. In the first wave, over a quarter of all COVID-19 deaths in England and Wales were people living with dementia[5] and the biggest increase in excess deaths was also in people with dementia.[6] For those who have survived the crisis, the impact of the ‘lockdown’ measures introduced to contain the virus have been severe and many people with dementia have seen their condition deteriorate at a faster rate over the course of the pandemic. 

1.3.   We would like to thank Professor Linda Clare of the Alzheimer’s Society-funded research project Improving the experience of Dementia and Enhancing Active Life (IDEAL) at the University of Exeter, for providing research evidence in support of this submission.

2. What is the anticipated size of the backlog and pent-up demand from patients for different healthcare services including, for example, elective surgery; mental health services; cancer services; GP services; and more widely across the healthcare system?

2.1.   The reality: Imagine going into the first national lockdown with dementia. As well as dementia, you are having heart problems which need further investigation. Suddenly, all of your GP and hospital appointments are replaced by phone services – but you do not feel you will be able to say what has been troubling you properly on the phone. Since none of your healthcare providers have a video call option (you’re a regular on Zoom in other aspects of your life), your children have to speak on your behalf. As a result, no healthcare professional has actually seen or spoken to you about your health problems. You feel as though you have lost control and are no longer yourself. It is like nobody is listening to you anymore. You do not want to burden the NHS but feel sad that no-one at the GP practice has been in contact to ask how you are.[7] 

(This vignette is based on interviews the IDEAL programme carried out as part of their linked COVID-19 INCLUDE project. This has been the reality for many people living with dementia).

2.2.   The INCLUDE project is a rapid response research study seeking to understand the impact of the COVID-19 pandemic and the resulting restrictions on people with dementia and their carers. Evidence collected from September 2020 - April 2021 showed that even by this point, little progress had been made with regards to accessing health services. INCLUDE heard from 173 people with dementia and 288 carers and found that 48% of people with dementia felt their healthcare needs had been negatively affected by the pandemic. Several people affected by dementia noted delays or cancellations to appointments, ranging from those for podiatry, through to cancellations of exploratory tests for “possible bowel cancer”. [8]  While it is understandable that during peaks of the pandemic, health services prioritised COVID-19 patients, this has, along with reduced social contact, contributed to people with dementia experiencing a significant deterioration in their condition.

2.3.   Dementia diagnosis rates: A person concerned with possible dementia symptoms will generally speak to their GP in the first instance. Following this, they may then be referred to a memory assessment service for a formal dementia diagnosis. A timely diagnosis provides huge benefits for the individual.[9] It unlocks a range of information, advice and support which will enable them to cope with their condition but also live better now. It also provides for better management of any other conditions that may be affected by their dementia while also providing them with the time to plan ahead and make informed decisions about their future needs. In 2013, NHS England agreed a national ambition for diagnosis rates, aiming for two-thirds of the estimated number of people with dementia in England to have a diagnosis. This was first achieved in November 2015, with rates remaining broadly steady since then.[10]

2.4.   However, diagnosis rates for dementia over the pandemic have plummeted. Before the pandemic, the national diagnosis rate stood at 67.6% (February 2020) but dropped significantly to 61.1% the following February. Since March 2021, there has been a steady, albeit marginal, increase in the dementia diagnosis rate (0.1% each month until June 2021) to 61.9%.[11] Whilst the continued increase is positive, progress is far too slow. From June 2021, we conservatively estimate that services nationally need to diagnose 32,385 people to at least get back to pre-pandemic levels (achieving the two-thirds target). Others suggest this could be as high as 50,000.[12] We understand that the changes in healthcare delivery at both primary and secondary care level, redeployment of healthcare staff, and patient fears over COVID-19 have all contributed to the reduction of the dementia diagnosis rate.

2.5.   Care plan reviews: Care plans exist to identify emerging care and support needs, while also identifying appropriate measures to be put in place. Initiation of new care plans as well as care plan reviews for dementia have significantly reduced over the course of the pandemic. The 2019 monthly average percentage of people with dementia who had a care plan review stood at 67.7%.[13] However, the monthly average for 2020 was 62.3%. The latest data for June 2021 shows this indicator stands at just 36.8%. Similarly, in 2019, the monthly average percentage of people with dementia who had a medication review was 22.2%. This dropped slightly to 21.5% in 2020, but the latest data (June 2021) shows this at just 12.8%. Given the needs of people with dementia will have likely increased over the pandemic, the lack of care plan reviews means people will be living with heightened care and support needs, yet these will not be identified appropriately by healthcare professionals.

2.6.   Reduced social contact: A number of studies examining the impact of the lockdown measures introduced during COVID-19 found that reduced social contact has resulted in a decline in cognition and mental health in people with dementia.[14][15] People with dementia must regularly practise their physical, communication and cognitive skills; if they do not, they risk losing those skills permanently, which can lead to a premature deterioration of their dementia and potentially a premature death. An Alzheimer’s Society survey in June 2020 found that 79% of care homes reported that a lack of social contact is causing a deterioration in the health and wellbeing of their residents with dementia.[16] The measures taken to contain the pandemic, such as multiple ‘lockdowns’, restrictions on visiting in care homes and the closure of day centres have removed opportunities for these skills to be practiced, contributing to increased deterioration of individuals’ dementia. Another Alzheimer’s Society survey in July 2020 on the effects of lockdown found that 82% of people affected by dementia reported significant deterioration of symptoms in loved ones. Of those who had seen a decline, around half reported increased memory loss (50%) and difficulty concentrating (48%). More than one in four (27%) said reading and writing has become more difficult, and one in three said the same for speaking and understanding speech (33%).[17] As we emerge from the pandemic, there will be an increased need for rehabilitation services from people with dementia. Such rehabilitation will enable them to prevent further deterioration and/or help them to manage with the skills they still have left.

2.7.   Rehabilitative services: In order to maintain abilities for as long as possible, a person with dementia requires the support of a range of community rehabilitation services, such as occupational therapists, physiotherapists, speech and language therapists and podiatrists.[18] However, during the pandemic many of these services have been suspended. Communication from the Department of Health and Social Care and NHS England and NHS Improvement during the first wave, advised that allied health professionals may have to work outside an individual’s scope of practice due to the circumstances of the pandemic.[19] This meant that many allied health professionals who provide rehabilitation were deployed to acute services, with community services primarily offering virtual support. The IDEAL COVID-19 Dementia Initiative collected evidence between May-June 2020 to examine the experiences of people with dementia and carers during the first lockdown. It heard of suspension of both tests and exploratory treatment of a newly diagnosed heart condition, cancellation of regular appointments to monitor long-term conditions, discontinuation of physiotherapy and reablement following (pre-lockdown) fractured hips and suspension of daily visits by District Nurses to manage unstable diabetes. There was also a lack of availability of opticians, audiologists and chiropodists.[20] The above examples are from a sample of just 11 people with dementia and 11 carers, this provides an indication of the sheer number of people with dementia who are likely to be experiencing delays in accessing services. Although such interruptions were felt by the whole population, we must remember that these services and the support they offer are fundamental to enabling people to live well with dementia. We also know that over 90% of people with dementia are living with another health condition[21] and that such comorbidities negatively affect living well.[22]

2.8.   Avoidance of services: Some people with dementia and carers have been reluctant to access health and care services including GP, hospital, residential and domiciliary care. This is in part, due to a fear of contracting the virus, which they might perceive to outweigh the benefits of seeking support, but also in part due to a concern about not wishing to be a burden on the NHS.[23] During peaks of the pandemic concerns that the NHS could become overwhelmed were reported widely in the media and there was a decrease in the number of people accessing non-emergency services.[24]  When people with dementia were asked why they did not seek out health services, though the most common answer involved avoiding contracting COVID-19, participants also referred to fear of “putting pressure on the system”, observing that they “don’t want to be a nuisance – they’ve got enough on”. [25] However, not proactively seeking support can mean people with dementia and carers are left behind and trying to ‘catch up’ on their health later on, will likely be more expensive and time consuming to health and care services.

2.9.   Rise in antipsychotic prescribing: Rates of antipsychotic prescribing for people with dementia increased over the pandemic.[26] Pre-pandemic, the percentage of people living with dementia in receipt of an antipsychotic drug was around 9.4%. However, this has increased and has remained steady at around 10% since December 2020. Care homes and clinicians reported to us that many residents experienced increased agitation and distress. While there are non-pharmacological interventions that can be used to reduce these symptoms, care homes and clinicians reported to us that there was a lack of access to community nursing teams during the pandemic to undertake appropriate assessments and provide adequate interventions to reduce these symptoms without the need for medication.

2.10.                      Association between COVID-19 and dementia: One of the first studies looking at whether COVID-19 survivors are at increased risk of neurological disorders has recently been published. The study funded by the National Institute for Health Research shows that there is evidence for substantial neurological and psychiatric morbidity, including dementia in the six months following COVID-19 infection. Although incidences were greater where patients were hospitalised or required  intensive care, the risk was also increased in patients who did not require hospitalisation.[27] Clinicians have also seen a significant acceleration in people’s dementia symptoms following COVID-19 infection, and warn that without sufficient funding and research we risk being overwhelmed by an “oncoming pandemic of dementia“.[28] Given the scale of the pandemic, these findings are important to consider as health and care services plan for future need. We already know that the number of people with dementia is set to rise to over 1 million by 2025.

2.11.                      Social care assessments: Currently there is no cure for dementia, and the majority of care provided to people is through social care; at least 70% of care home residents are people with dementia.[29] The 2021 spring survey from the Association of Directors of Adult Social Services in England (ADASS), reveals that almost 75,000 disabled people, older people and carers are waiting for help with their care and support as social services struggle to cope with needs arising from the pandemic. While people with dementia have been worst hit by the pandemic, this has been on top of the long-standing underfunding and neglect of social care by successive governments that has made it difficult for people to access the support they need.[30] The government must demonstrate how it will increase the number of assessments undertaken and ensure that care needs are being met.

3. What capacity is available within the NHS to deal with the current backlog? To what extent are the required resources in place, including the right number of staff with the right skills mix, to address the backlog?

3.1.   Diagnosis: As outlined, there has been a significant drop in the dementia diagnosis rate. To circumvent this, proactive case finding for dementia is needed to identify these missed diagnosed cases, as well as further cases of dementia. The Dementia Quality Toolkit is a method of achieving increases in diagnosis rates proven to be successful. The toolkit runs a series of reports on GP registers and can identify possible dementia by a number of indicators, including patients who have been prescribed dementia mediation; patients who have been coded with delirium in hospital and patients who live in a care home. Additional screening processes for certain patient groups at primary care level may also help identify possible dementia, but we know, and it has been well-documented[31], that resources and capacity at primary care level are already stretched.

3.2.   Secondary care capacity: Memory services reported to us that they are struggling to cope with increased demand. Some memory services told us that the considerable increase in their case list was a direct result of the pandemic, meaning a knock-on effect on patient waiting times to diagnosis, as well as potential burnout of secondary care staff in reducing this backlog. In our survey to memory services between April 2021 to June 2021, we asked what the impact of the pandemic was on their service provision:

-          “Memory services were stopped for months... All our work was put on hold. We now have a massive backlog and a lot of our clients have deteriorated. We have been unable to provide the post diagnostic support we usually offer such as education groups”

-          “There will be a tsunami of referrals to memory services; family have not seen older relatives and may not have picked up on decline in function / cognition, as lockdown lifts family will become more aware of problems.”

In response to the question of how to reduce the backlog of patients waiting to access a memory assessment and/or diagnosis, memory services reported to us:

-          “Senior leadership need to deploy appropriate level of resources to enable memory service staff to do their job. Just expecting staff "to cope / manage" is not good enough.”

-          “I'm really not sure that we can, I feel that the restrictions continue to have a profound impact on our service. Video and telephone assessments are useful but limited to the few. Our most vulnerable clients are suffering, those with no internet, no family who need more engagement regarding human contact to build trust and therefore provide an accurate assessment and/or support”.

3.3.   Access to brain scanning is also a considerable factor. Brain scanning is not always needed for a dementia diagnosis but is appropriately used to identify complex dementias or identifying a subtype. However, access to brain scanning, which is usually done within an acute setting, has been significantly impacted during the pandemic. One reason for this reported to us was that brain scanning for dementia was not considered a priority. Overall, provision of additional workforce and resource, complemented by a national prioritisation of dementia diagnosis, is needed to address the backlog.

3.4.   Rehabilitative services: People with dementia rely on several community rehabilitative services to help manage their condition but these have been significantly restricted due to the pandemic. A delay in accessing rehabilitative services can result in people waiting until they reach crisis point before seeking out support.  Proactive case-seeking for people with dementia who are at risk of deconditioning is needed, and rehabilitative support provided to those who require it. However, even prior to the pandemic, the capacity of the NHS to deliver rehabilitative services was poor. Despite being recommended within NICE guidance to be considered as part of post-diagnostic support,[32] people with dementia were not being routinely offered rehabilitation services. [33] However, in the context of COVID-19, rehabilitation will be particularly important for people with dementia due to the increased risk of worsening physical, cognitive and emotional health in people who have been negatively impacted as a result of measures taken to contain the pandemic, which forced a change in routine, and isolation from regular support systems.

3.5.   While the aftercare needs of patients recovering from COVID-19 have been considered by the NHS,[34] the aftercare needs of people who did not contract the virus but have become deconditioned due to the measures introduced to control the spread of the virus have thus far been overlooked. A clear strategy is needed to support people affected by dementia as well as those with other long-term conditions. As per our recent paper, Moving Forward Stronger, we are calling on national and local government to:

-          fully fund a national two-year rehabilitation strategy that ensures people with significantly deteriorated long-term conditions get the therapeutic support they need

-          appoint a national clinical lead to implement this rehabilitation strategy

-          ensure local partners – such as local authorities and Integrated Care Systems (ICS) – develop and deliver their own localised rehabilitation strategy, and that each ICS has a regional rehabilitation lead.[35]

A rehabilitation strategy that enables people with dementia to recover from the impact of the pandemic can reduce this deterioration of cognitive or physical symptoms. To do so, the strategy must urgently provide people living with dementia with intensive support from professionals in community care and consider the needs of informal carers, who are an essential part of rehabilitation for people with dementia. However, despite the vital role of community rehabilitation services, they are poorly understood compared to other parts of the NHS and there is a lack of data on cost, activity, quality and outcomes of care.[36] As part of a rehabilitation strategy, better data collection and a review of rehabilitation services are required to understand and address the barriers to accessing support, including the capacity of the NHS to provide services that meet the needs of people with dementia.

4. How might the organisation and work of the NHS and care services be reformed in order to effectively deal with the backlog, in the short-term, medium-term, and long-term?

4.1.   An integrated health and care system: An integrated health and care system is fundamental to quality dementia care. People with dementia frequently move back and forth from health and care settings, and healthcare is often delivered in social care settings.[37] We welcome proposals in the Health and Care Bill for continued development of Integrated Care Systems, which we see as a significant and positive step forward. However, it is difficult to comment on a Bill that seeks to integrate health and social care when we are as yet unclear on what the future shape and format social care will take. The Bill is largely driven from the perspective of NHS resources and priorities. It misses an opportunity to build a real partnership between care and health built on equity which enables people to live their lives the way they choose, in the places they call home, and in communities where we care about and support one another.

4.2.   Decades of underfunding and neglect have led to a care system where people struggle to access the care they need, face catastrophic costs to pay for care, and in many cases experience care that isn’t of sufficient quality. Now, as we hopefully begin to emerge from the COVID-19 pandemic, with many people with dementia experiencing a worsening of symptoms, we need a care system and workforce capable of giving people the support they need and deserve. The need to invest in people and communities has never been more urgent.[38]

5. What positive lessons can be learnt from how healthcare services have been redesigned during the pandemic? How could this support the future work of the NHS and care services?

5.1.   Remote appointments for dementia diagnosis: The pandemic inevitably led to changes in the delivery of healthcare across primary and secondary care. This has been no different with memory assessment services. In our survey to memory services between April 2021 to June 2021, over the pandemic, 5% stated they provided no service, 48% had reduced the number of appointments, 33% said they were only seeing urgent and severe cases and 38% said they were accepting referrals but adding to their case list. Over three quarters (76%) reported providing appointments virtually in place of face-to-face appointments. The provision of remote appointments for the assessment and diagnosis of dementia as a new normal, at least over the course of the pandemic, brought about both challenges and opportunities for services and service users. Memory services reported that remote appointments were effective for triaging and collecting patient history yet were insufficient for cognitive testing. Services also reported that remote appointments were more time-effective, allowing professionals to get through their case list in a more efficient manner. However, services reported that the quality of assessment is also impacted by it being conducted remotely. Certain contextual information to support an assessment, such as walking gait or functional capability, can be difficult to ascertain remotely. People with dementia are likely to be older and are more likely to have other morbidities or conditions. Memory services reported to us great difficulty in conducting assessments with some people with dementia, particularly if they have sensory difficulties such as hearing loss or impaired vision.

5.2.   For service users, people with dementia reported to us mixed views of the benefit of remote appointments, including not travelling to appointments and the comfort of attending appointments from one’s own home. However, older people are the most likely cohort to be digitally excluded or disadvantaged and many reported having to rely on family members to support access. Other people with dementia told us that remote appointments felt ‘impersonal’ and it was difficult to build a rapport with their clinician, something that is important given that some people may find talking about their own cognitive decline a sensitive and vulnerable topic. This is particularly important given that a dementia diagnosis is a life-changing experience and for some people it can be inappropriate and distressing to receive a diagnosis  virtually. Being able to choose between a face-to-face and virtual appointment was a key theme emerging from our engagement with people affected by dementia and dementia services. This would support the delivery of personalised care for people living with the condition.

5.3.   Rehabilitative services: The use of technology to assess and deliver rehabilitation services has expanded significantly during the pandemic. The Royal College of Occupational Therapists found that 60% of occupational therapists surveyed were providing an alternative method of service delivery such as remote delivery.[39] While there are some positives to remote delivery such as no PPE requirements and ease of access, there are still many issues with some services needing to be done face-to-face by trained professionals. Professionals have had to train care home staff to be their ‘hands’, as well as in communication and swallowing issues, to facilitate safe and effective assessment, however, this is not always possible in a busy and understaffed care home. For occupational therapy, some people are unable to pinpoint their own barriers, so face-to-face observation is required to identify barriers in their environment. Specifically, for speech and language therapy, poor Wi-Fi signal and sound quality can impact on voice assessments. For podiatry, video only enables a 1-dimensional view and prevents professionals from feeling the temperature of a foot, which, if cold, would give an indication of reduced arterial flow. People have also reported a lack of motivation to access digital interventions, signalling the need for face-to-face. NHS England and NHS Improvement have identified that where the use of digital technology is ‘benefitting patient experience and staff satisfaction, clinical outcomes, productivity and environmental impact’, it will be retained.[40] However, there needs to be more research conducted on how best to deliver rehabilitation services virtually, particularly for people with dementia. Digital methods need to consider full inclusion and patient choice to ensure they don't result in increased inequalities in access to rehabilitation.

5.4.   Data and information: One success of the response to the pandemic was the requirement on all social care settings to use the Capacity Tracker, enabling better information sharing for health and care providers and smoother transfers of care for individuals. The use of the Capacity Tracker in social care led to easier discharge, which is important to maintain. The efficacy of the tracker and scrutiny of social care can be further improved through publishing regular data on social care including that which is collected through the tool. However, we lack a huge amount of data on integration and provision, particularly in social care. In the recent publication of adult social care statistics in England, there are a number of gaps in data on unmet need, informal care, self-funders, outcomes for quality of care, and seldom listened to cohorts.[41] While the current Health and Care Bill attempts to close some of these gaps, it is vital that data is available that reports on people with different conditions. For example, the Adult Social Care Activity & Finance Report would be a vital resource in understanding whether people with dementia’s needs are being met by local authorities, but data is not collected by condition.

5.5.   In addition to this, within health there is a lack of data to help ascertain the quality of care being given to people affected by dementia.  An example of this was the dementia metrics within the CCG Impact and Assessment Framework, where a national level metric recorded whether people had had a care plan reviewed by their GP but told us nothing about the quality of that interaction or the care plan itself, just the process of it having been done.

5.6.   We agree that the sharing of data between systems should be prioritised in order to aid communication and swifter response to the needs of individuals who are moving between health and social care.  This particularly applies to people affected by dementia and can also help reduce duplication of ‘story telling’ in relation to assessments and referrals between services; an issue that is a particular challenge for people with dementia due to the impact the condition has on their memory and communication skills. The new data strategy from NHSX sets out a path for better and more co-ordinated data flowing between different organisations across health and social care. This ambition for better data, intelligence and information can support people to live the lives they want to lead independently and begin to position services as enablers for delivering a more proactive and preventative set of care models. It is critical that this integration is not just delivered at system level, but at person level with improved access to digital healthcare records across health and social care. The final NHSX data strategy should set out how better data and information will be made available to support those accessing social care to have more choice and control. This should also align with the recently published Care Quality Commission strategy.[42] 

6. What can the Department of Health & Social Care, national bodies and local systems do to facilitate innovation as services evolve to meet emerging challenges?

6.1.   The Government needs to do more to support and enable evidence in health and social care, including by improving funding for research into how quality care is defined, evaluated and improved, as well as supporting innovations in practice. The Government should create a dedicated fund to support local innovation and improvement projects on the frontline within social care that pilot new ways of delivering quality care, with effective evaluation and rolling out learnings more widely from existing networks such as the DHSC funded Social Care Institute for Excellence (SCIE), Think Local Act Personal (TLAP) and Shared Lives Plus’ Social Care Innovation Network.

6.2.   Staff on the frontline who have a good understanding of the needs of the people they are supporting are well-placed to identify new ways of delivering quality care. Support for this could build on the evidence-based principles to be effective at adopting innovation set out by the NHS Accelerated Access Collaborative (AAC) and the CQC, which includes developing a culture where innovation can happen. Social care can look to the impact innovation has had in the NHS, which a report from the AAC states has delivered benefits of over 12,000 fewer hospital admissions and a saving to the NHS of over £50 million.[43]

Sept 2021