NHS0027

Written evidence submitted by Alzheimer's Society UK

Alzheimer's Society is the UK's leading support services and research charity for people with dementia and those who care for them. It works across England, Wales and Northern Ireland. The Society provides information and support to people with all forms of dementia and those who care for them through its publications, dementia Helpline and local services. We represent the 900,000 people with dementia in the UK, their carers and wider network of family and loved ones. Our responsibility is to make sure their voices are heard in this discussion and that future arrangements meet the needs of all people affected by dementia. This is even more important for the future, as numbers of people with dementia are set to rise to over 1 million by 2025.

We welcome the opportunity to feed into the Committees work. If we can be of any further assistance in providing additional evidence or meeting with the Committee, please let us know.

Dementia as a whole system challenge

Dementia is a complex condition crossing primary, secondary, community, acute and social care. This complexity inevitably leads to a lack of ownership of the condition within the health and care system meaning support for dementia is not provided by one service or care setting. This creates variation in the quality and type of support people receive. The integration of health and care services presents an important opportunity for people affected by dementia to experience better joined-up care across GP services, hospital care and social care. Better integrated dementia care also brings an opportunity to relieve operational bottlenecks within the system and improve quality of life in people affected by dementia by, for example, reducing crisis admissions and delayed hospital discharges.

Dementia diagnosis recovery

Dementia is a complex degenerative condition, with symptoms of cognitive, physical, and functional decline. This complexity, and the current lack of disease-modifying treatments, means that access to a timely diagnosis is the most essential component to management of the condition. Alzheimer’s Society’s frontline staff see time and again how receiving a dementia diagnosis opens the gateway for people to access pharmacological interventions for symptom management where indicated, and evidence-based psychosocial interventions, such as cognitive rehabilitation[1]. Without a diagnosis, you can’t. The importance of getting a diagnosis is echoed by people affected by dementia, with more than 9 in 10 people reporting at least 2 benefits from getting a dementia diagnosis[2].

The Covid-19 pandemic caused significant decline in dementia diagnosis rates. From January 2020 to June 2022, NHS Digital statistics revealed dementia diagnosis rates in England dropped from 67.6% to 62.0%, equating to a reduction of over 30,000 diagnoses in England alone. Despite a very modest investment of £17m from NHS England between October 2021-March 2022 the diagnosis rate has remained stagnant, and far below where it was before the pandemic[3]. A reduction in the number of people being diagnosed with dementia more broadly contributes to pressure on NHS capacity and waiting times. People affected by dementia have specific needs that can be supported through a dementia diagnosis. This includes access to community services such as rehabilitation to maintain their independence. Without a diagnosis and the support that it brings, people affected by dementia ultimately are more likely to reach crisis point, including avoidable hospital admissions. Research suggests that a community-delivered dementia management care programme to co-ordinate treatment and care has the potential to reduce avoidable healthcare costs, mainly through fewer hospitalisations and delayed institutionalisation.[4]

The evidence gathered by Alzheimer’s Society indicates several barriers to the recovery of dementia diagnosis rates in the UK, including memory assessment clinic funding and workforce capacity, and access to and waiting times for brain scans. Although GP referrals to memory assessment services in England have returned to pre-pandemic rates, the number of dementia assessments carried out remains worryingly low. Between 2019 and 2021 there was a 42% decrease in dementia assessments conducted. Although this number is slowly increasing, as of June 2022, on average just 2,850 people had been assessed per month at a memory assessment service, compared to a yearly monthly average in 2019 of 4,656.1

Alzheimer’s Society are hearing from memory service clinicians that people with dementia are not prioritised for vital brain scans which are essential for understanding the subtype of a person’s dementia to tailor care to their needs. Access to brain scans and their reporting is part of the dementia diagnostic pathway, but there is a current capacity issue in the radiology workforce and scanning equipment within the UK[5]. There is regional inequity of access to diagnostic services, including emerging and innovative diagnostic tools and technology. The latest National Audit of Dementia states that 23% of memory assessment services are not able to refer for PET scans, 12% for DAT scans, 56% for CSF examination and 22% for SPECT scans (which are all different methods of diagnosing dementia subtypes).[6] In addition, lengthy waiting times for the reporting of CT and MRI scans are routinely reported by clinicians in memory clinics as barriers to timely diagnosis.

The 2022 Alzheimer’s Society and Royal College of Psychiatrists survey found that for standard neuroimaging such as CT scans, patients with suspected dementia had to wait on average five to seven weeks, and for advanced neuroimaging such as PET, MRI or DAT scans, patients with suspected dementia had to wait an average of eight to 10 weeks[7].  Respondents also reported they had seen patients waiting over six months for both standard (7% of patients) and advanced (5% of patients) neuroimaging[8], which is over four times longer than the diagnostic waiting time target of a maximum of six weeks[9].

Currently NHSE does not know how many people are waiting for a dementia diagnosis, nor does it have a national plan to recover diagnosis rates. This is deeply concerning. Without this data and a credible, resourced national plan, people with undiagnosed dementia have no clear offer from the NHS that recognises and responds to unmet need. Alzheimer’s Society stands ready to work the NHS England and the Government to inform and support the development of a recovery plan.

A dementia diagnosis is the gateway to improved health and social care, however at present a dementia diagnosis does not lead to major intervention at secondary care level, as there are currently no disease-modifying treatments or cures, meaning in practice that dementia gets deprioritized.

As such people with dementia face a double disadvantage when it comes to accessing diagnosis under the current elective recovery plan. Not only must they adjust to a diagnosis of an illness for which there is no cure or disease-modifying treatment, they are also not seen as part of the elective recovery framework and as such dementia diagnosis pathways cannot access the elective recovery funding pot.

To support the provision of effective care and support, national dementia metrics on system and service performance must be developed and adopted appropriately by individual ICSs, depending on local population needs. This is necessary to enable ICSs to prioritise funding for dementia to ensure that it is focused on, and ultimately reduce crises in people affected by dementia that are costly on a financial, social and individual basis.

Post-diagnostic support and treatment: Access and monitoring

The main driver for a dementia diagnosis is to facilitate access to care and support to help people manage with this complex condition. Alzheimer’s Society know people do not get the post-diagnostic support they need - three out of five (61%) people affected by dementia told us that they did not feel supported by the health and care system after being diagnosed with dementia[10]. Post-diagnostic dementia support in England, Wales and Northern Ireland (we do not operate in Scotland) is very patchy with provision dependent on local commissioner decisions in England and Northern Ireland, and on central commissioning decisions in Wales. Unmet post-diagnostic support need increases the risk of adverse, costly and detrimental outcomes such as hospitalisation, carer breakdown and more rapid admittance to care homes for people affected by dementia. 54% of carers reported to us reaching crisis point over the last year due to a lack of necessary support, with 22% reporting this was due to their loved one being admitted to A&E with a crisis in their healthcare[11]. However, due to its complexity, which presents needs across primary, community, acute and social care, dementia has fallen through the gaps within Government and NHS England recovery planning. There is currently no mandatory monitoring of access to evidence-based interventions for dementia.

In the absence of centralised data from NHS England regarding the dementia treatment backlog, the system relies heavily on ad-hoc, clinical audits to assess unmet need. Most recently for example, the National Audit of Dementia6 demonstrated that just 25% of dementia services offered cognitive rehabilitation, despite this being one of the few evidence-based interventions for the condition1.

The lack of support in the community directly leads to substantial challenges for hospital care. In 2020/2021, 90% of hospital admissions for people living with dementia were emergency admissions, compared to 39% for the general population.[12] Two-thirds (65%) of all emergency admissions for people living with dementia were for potentially avoidable illnesses and injuries that could have been prevented with better community support[13]. There were over 350,000 hospital admissions for people living with dementia for chest infections, falls, urinary tract infections and delirium between 2015 and 2020[14] – potentially avoidable conditions with improved community support. This cost to the NHS in England was almost £1bn[15] and represented 1.6 million bed days[16] across a five-year period.

The gridlock between health and social care

We know people with dementia are struggling to return home following a hospital admission due to a lack of capacity in the social care sector and lack of coordination on discharge. The Nuffield Trust reports that 24% and 15% of all patients experienced a delayed transfer of care for domiciliary care and residential care, respectively.[17] People with dementia stay in hospital twice as long as other people over the age of 65[18], meaning that a reduction in the number of admissions to hospital for people with dementia will result in a proportionately larger reduction in levels of bed occupancy compared to other conditions.

People with dementia can experience discharges that are inappropriate, unsafe and untimely. This can lead to significant challenges, both for people and their families, as well as the wider health and social care system. These challenges can include deconditioning, readmission and premature admission to care homes. Patients with dementia may have experienced deterioration of their condition when in hospital, especially those who stay for longer periods. While problems with discharge are widespread, we know that in 2021, 13% of patients with dementia stayed in hospital between 15 and 30 days and 4% stayed between 31 and 90 days. [19] Shockingly, even when people are discharged, a third of frail people (33%) have reported that the care and support they needed was not available when they left hospital, significantly higher than the non-frail patient cohort group (20%).[20]

A lack of capacity for hospital discharge is largely being driven by a lack of appropriate workforce in the community. Skills for Care reports 165,000 vacancies in social care in England, and the vacancy rate of 10.7% in 2021.22 is the highest since records began.[21] The Care Quality Commission reports that, in four of the five Urgent & Emergency Care systems they reviewed, people who were medically fit for discharge could not leave because of insufficient social care capacity.[22] The All Party-Parliamentary Group on Dementia’s recent report Workforce Matters[23] supported by Alzheimer’s Society, shows that people affected by dementia want a workforce with knowledge and understanding of their specialist needs, who provide care that sees the whole person and focuses on what really matters to them. The APPG sought the feedback of people affected by dementia, in part through a survey of nearly 2,000 people, which found that less than half of people (44%) rated care staff’s understanding of dementia positively. 28% rated it neutrally, and 28% rated it negatively. 26% of people didn’t feel involved in the planning and provision of the care received; and 42% felt somewhat involved. Involvement in the planning of care is essential in particular in the context of hospital discharge in order to ensure that someone is discharged in an appropriate manner with appropriate support from family carers and professional staff in the community.

System preparedness for future treatments

Alzheimer’s Society are clear that we need to immediately recover the dementia diagnosis rate to its pre-pandemic level. This is a precursor to preparing the system for emerging treatments and a far more ambitious diagnosis rate by the end of the decade. As of October 2022, there are 143 different drugs being tested in clinical trials for Alzheimer’s disease dementia, 83.2% of these being disease-modifying treatments (i.e. drugs which are designed to slow down the progression of the disease).[24] Of these, Donanemab and Lecanemab are the most promising. As these drugs are still in the clinical trial stage it is difficult to ascertain when they may be available to patients, if approved for use. However, to enable patient access in the UK, it is important that people have a dementia subtype diagnosis (for example Alzheimer’s type dementia; vascular dementia, frontotemporal dementia etc).

 

To enable accurate dementia subtype diagnoses, the NHS must have sufficient scanning capacity to ensure timely access to these emerging treatments for eligible patients. The most promising drugs all target and promote the clearance of amyloid protein from the brain. In order to identify which patients can benefit, they will need to be ‘amyloid positive’, which can only be understood through gold-standard diagnostic tests – amyloid PET scans and/or a CSF test via a lumbar puncture.

 

Overall, there is a need to speed up the diagnosis process to ensure access to disease-modifying treatments since many drugs are thought to likely be more effective the earlier a person living with Alzheimer’s disease dementia receives them. This will have significant ramifications for NHS diagnostics provision, including access to scanning - planning for which must commence now.

November 2022


[1] Dementia: assessment, management and support for people living with dementia and their carers

NICE guideline [NG97] Published: 20 June 2018.

[2] Alzheimer’s Society (2021) Barriers and Benefits to Diagnosis. Available: https://www.alzheimers.org.uk/news/2022-05-16/91-people-affected-dementia-see-clear-benefits-getting-diagnosis

[3] NHS Digital. (2022). Recorded dementia diagnoses. Available: https://digital.nhs.uk/data-and-information/publications/statistical/recorded-dementia-diagnoses.

[4] . Michaalowsky, B. et al. (2019). Cost-effectiveness of a collaborative dementia care management – Results of a cluster-randomised controlled trial. Alzheimer’s & Dementia. 15 (10): 1296-1308

[5] Kings Fund (2022). Available https://www.kingsfund.org.uk/publications/why-do-diagnostics-matter.

[6] National Audit of Dementia. (2022). Memory Assessment Services Spotlight Audit 2021. Available: final-1008-nad-mas-national-report-2021-v2.pdf (rcpsych.ac.uk).

[7] Alzheimer’s Society and RCPsych Survey, 2022, Memory Assessment Audit, SmartSurvey, Respondents: 59

[8] Ibid

[9] Nuffield Trust, diagnostic test waiting times. Available: https://www.nuffieldtrust.org.uk/resource/diagnostic-test-waiting-times

[10] Alzheimer’s Society. (2022). Left to Cope Alone: The unmet support needs after a dementia diagnosis. Available: https://www.alzheimers.org.uk/about-us/policy-and-influencing/left-cope-alone-unmet-support-needs-after-dementia-diagnosis

[11] I Ibid

[12] NHS England. (2022). 2018/19 to 2020/21 Hospital Episode Statistics. Data relating to dementia provided by Office for Health Improvement and Disparities.

[13] Alzheimer’s Society FOI request of 2019 NHS Trust data (2021), available: https://www.alzheimers.org.uk/news/2021-05-17/emergency-admissions-dementia-care-failures-soaring-and-worse-come-warns-charity

[14] Alzheimer’s Society FOI request of 2019 NHS Trust data (2021), available: https://www.alzheimers.org./news/2021-05-17/emergency-admissions-dementia-care-failures-soaring-and-worse-come-warns-charity

[15] Alzheimer’s Society (2022). Left to Cope Alone: The unmet support needs after a dementia diagnosis, available: https://www.alzheimers.org.uk/sites/default/files/2022-07/left-to-cope-alone-after-diagnosis-report.pdf

[16] Alzheimer’s Society estimate (2022), based on the average length of stay in hospital (two to seven days, an average of 4.5 days), multiplied by the number of admissions to hospital of people with dementia (356,681) across a five-year period. All of the data in the calculation (length of stay & number of admissions to hospital) is from NHS England. (2022). 2018/19 to 2020/21 Hospital Episode Statistics. Data relating to dementia provided by Office for Health Improvement and Disparities

[17] Flinders, S & Scobie, S. Hospitals at capacity: understanding delays in patient discharge. Available: https://www.nuffieldtrust.org.uk/news-item/hospitals-at-capacity-understanding-delays-in-patient-discharge Last accessed 10/10/22

[18] Alzheimer’s Society (2016) Fix Dementia Care: Hospitals, available: https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/fix_dementia_care_-_hospitals.pdf

 

[19] NHS England. (2022). Data provided by NHS England to Alzheimer’s Society. Hospital Episode Statistics dataset 

[20] Care Quality Commission. (2020). Most patients are positive about their hospital care but discharge delays and access to support once home remain a concern – particularly for the frail. Available: Most patients are positive about their hospital care, but discharge delays and access to support once home remain a concern – particularly for the frail - Care Quality Commission (cqc.org.uk) Last accessed 09/09/22

[21] Skills for Care (2022) The State of the adult social care sector and workforce in England, https://www.skillsforcare.org.uk/adult-social-care-workforce-data/Workforce-intelligence/publications/national-information/The-state-of-the-adult-social-care-sector-and-workforce-in-England.aspx

[22] Care Quality Commission (2022) State of Care, State of Care - Care Quality Commission (cqc.org.uk)

[23] APPG on dementia (2022) Workforce Matters: Putting people affected by dementia at the heart of care, https://www.alzheimers.org.uk/about-us/policy-and-influencing/all-party-parliamentary-group-dementia

[24] Cummings, J, Lee, G, Nahed, P, et al. Alzheimer's disease drug development pipeline: 2022. Alzheimer's Dement. 2022; 8:e12295. https://doi.org/10.1002/trc2.12295