Written Evidence Submitted by Alzheimer’s Society

(CLL0060)

Summary

• Alzheimer's Society is the UK's leading support services and research charity for people with dementia and those who care for them.

• Alzheimer’s Society has been calling on the Government to recognise at least one or two family members of care home residents as key workers for the duration of the pandemic to allow safe, meaningful visits.
   
• People with dementia have been disproportionally impacted by the coronavirus pandemic. Data from the Office for National Statistics shows that 27.5% of people whose death certificate mentioned Covid-19from March to June in England and Wales had dementia.
   
• Dementia diagnosis rates have fallen as a result of the pandemic and the closing of memory assessment clinics. In October the diagnosis rate hit 62.9%, the lowest of the year and significantly below the nationwide target of 66.7%.
   
• Alzheimer’s Society recommends that national UK governments set out a clear rehabilitation strategy to enable people affected by dementia to recover from the effects of the pandemic.
   
• Covid-19 has exposed how our fragmented social care system has failed to adequately support people with dementia. The need for social care reform is clear and urgent; it must be addressed within this parliamentary term.

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. It works across England, Wales and Northern Ireland. Alzheimer’s Society provides information and support to people with all forms of dementia and those who care for them through its publications, dementia helplines and local services. It 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.   In recent years, dementia has been the leading health and social care challenge facing the UK. 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. Of the top ten leading causes of death in 2018, dementia is the only one we cannot cure, prevent or even slow down.

1.1.   People with dementia have been at the centre of the Covid-19 crisis. Throughout the pandemic our Dementia Connect support line has been inundated with thousands of calls, 80% of those have been from people affected by dementia concerned about Covid-19 issues which demonstrates that people affected by dementia have been extremely worried during this period.
 

2. The effects of lockdown on people with dementia in care homes

2.1.   When shielding was introduced dementia was not considered as being one of those conditions particularly at risk. Alzheimer’s Society understands why governments and care providers took the step to close care homes to visits at that early point. However, in Alzheimer’s Society’s view this decision was a temporary measure until a longer-term solution could be found, it has now been over 8 months since then and this has not yet happened.

2.2.   There have been several iterations of guidance to care homes on visiting policy throughout the pandemic. This has often been published with little notice and with little reference to the needs of people with dementia.

2.3.   Guidance from 5th November states that indoor visits are possible using Covid-secure visiting areas/pods however these must have floor to ceiling screens and separate entrances to the room for residents and visitors. For many care homes, this is impractical or even impossible to facilitate. The guidance also suggests the use of ‘window’ visits; however, it stipulates that the windows must remain closed; this approach offers no meaningful contact.

2.4.   Alzheimer’s Society believes that this does not consider the specific needs of many people with dementia. There has been no progress in the latest iteration of the guidance to enable loved ones to provide residents with the vital care that they have been missing since March.

2.5.   Alzheimer’s Society welcomes the Government’s latest commitment to ensuring that visits will be able to take place between care home residents and their families by the end of 2020. However, Alzheimer’s Society believes these visits need to be meaningful, allowing loved ones to provide personal care to residents.
 

2.6.   For people with dementia, a lack of social contact is not only bad for their mental health, it also has a significantly negative effect on the progression of their dementia. If people with dementia do not practice their communication and cognitive skills, they run the risk of losing them permanently. Similarly, their dementia symptoms will deteriorate more rapidly than would usually be the case. Sadly, this could ultimately lead to them dying far earlier than they might otherwise have done so.
 

2.7.   Covid-19 symptoms are presenting differently in people with dementia and therefore family and friends are often best-placed to identify if someone is unwell and may require a Covid-19 test.
 

2.8.   If people living with dementia are unable to maintain their skills, they can quickly lose them. This includes recognising family members, as well as remembering words and how to form sentences.  People living with dementia are also more likely to have depression than the general population (23% against 19% of the whole population) and a lack of contact has the potential to deepen that depression.[1]
 

2.9.   A survey conducted by Alzheimer’s Society in August 2020 found that the most common symptoms that people living with dementia reported having increased since lockdown began were difficulty concentrating (48%), memory loss (47%), and agitation or restlessness (45%).[2]

2.10.                      Alzheimer’s Society has been hearing evidence throughout the pandemic of problems in providing care homes with the ongoing health support they needed when hospital admissions were discouraged, and clinicians physically withdrew. Alzheimer’s Society has been calling for NHSE to ensure that every residential care setting has nursing staff allocated to work in the setting at all times, at least for the duration of the pandemic.
 

2.11.                      In a different survey conducted by Alzheimer’s Society in June 2020, 79% of 128 care home managers reported that a lack of social contact was causing a deterioration in the health and wellbeing of their residents with dementia[3]

2.12.                      In this survey, care home staff reported that residents felt ‘isolated… and were experiencing depression’, that ‘those in the end stages of dementia were declining at a faster rate than normal’ and that ‘residents living with dementia particularly were losing weight because of being constantly in their rooms and not eating and drinking as before’.

2.13.                      Alzheimer’s Society has been calling on the Government to recognise at least one or two family members as key workers for the duration of the pandemic, giving them access to testing, PPE and infection control training – on the same basis as care home workers.

2.14.                      Alzheimer’s Society has welcomed the Government’s pilot scheme to designate family and friends as key workers but would like to see the Government commit to this being rolled out before Christmas - particularly as we are now 9 months into the pandemic.
 

3. Testing

3.1.   Throughout the pandemic, social care has not been on an equal footing as the NHS, with its staff and users not being prioritised for Covid-19 testing in the same way as NHS staff and patients have. Public Health England data shows there were four weeks in March to April where more than 800 new outbreaks in care homes were reported each week[4].

3.2.   In the early stages of the pandemic in March and April, hospital patients were rapidly transferred into community care settings without automatic testing. This put care home residents and staff at significant risk. In early May the Government agreed to provide testing to asymptomatic care home residents and health workers.[5]

3.3.   Regular testing for staff and residents was not announced until 3rd July[6] and there have been significant delays in the rollout of this scheme. According to a survey of 77 care home managers and directors in England by the start of June, only 40% of care homes had been able to access testing for asymptomatic residents.[7]
,

3.4.   Alzheimer’s Society continued hearing evidence as late as September, that the testing regime was not functioning properly. Care homes reported that tests had not being collected to be couriered to laboratories and results had taken too long to be returned.

3.5.   Given the disproportionate way the virus has affected people with dementia and the different symptoms they may present testing should be rolled out amongst care home residents and their loved ones to allow visiting to take place in a safe manner – for the health and wellbeing of those with dementia, their families and care staff.

3.6.  
 

3.7.   Alzheimer’s Society has heard that some people living with dementia found receiving nasal swab tests stressful and confusing, particularly when not administered by a trained clinician.

4. The impact of Covid-19 on people with dementia

4.1.   People with dementia have been disproportionally impacted by the effects of the Covid-19 pandemic. Data from the Office for National Statistics shows that 27.5% of people whose death certificate mentioned Covid-19 from March to June in England and Wales had dementia[8][9].

4.2.   There were 13,840 deaths of people with dementia involving Covid-19 from March to June in England and Wales .[10] Statistics also show that of the 475 deaths attributed to Covid-19 in March and April in Northern Ireland, one-third of these also mentioned dementia on the death certificate.

4.3.   Despite the fact that males had a higher rate of Covid-19 deaths than females across all age groups, there were more deaths of females (52%) than males (48%) with dementia involving Covid-19[11] likely reflecting the greater prevalence of dementia among females than males.[12]
 

4.4.   As the majority of people with dementia are over 65, their risk of severe Covid-19is high, but the link between dementia and Covid-19 goes well beyond age. 94% of Covid-19-deaths in March to June were in people over the age of 60.[13]

4.5.   Between January and July of this year, over 5,000 more people than we would ordinarily expect died of dementia. This means that dementia deaths were 52% higher for that period than they normally are.[14] This is likely driven by deaths from Covid-19 not being registered as such due to lack of widespread testing, and deaths of people with dementia without Covid-19 due to disruption of their normal care pathway.

4.6.   Research from the UK Dementia Research Institute (supported by Alzheimer’s Society) indicates that a fairly high proportion (18%) of nursing home residents who tested positive for Covid-19were either asymptomatic or had only atypical symptoms[15], which may have also contributed to the challenge of detecting and preventing spread of Covid-19in this population.

4.7.   Dementia diagnosis rates have fallen as a result of the pandemic and the closing of memory clinic services. In October the diagnosis rate fell further to 62.9%, the lowest of the year and significantly below the nationwide target of 66.7%.[16]

4.8.   The physical and mental health of those living with and affected by dementia will be greatly affected by reductions in dementia diagnoses and the inability to access the associated support that a diagnosis brings. This will be seen in the progression of people’s dementia increasing in speed due to interrupted care; in more family and friend carers struggling and reaching crisis point; and in the psychological impact of the pandemic, including on care home workers who have been providing high levels of end of life care, often without the usual clinical support.

4.9.   Alzheimer’s Society believes that governments needs to set out a clear strategy to enable people affected by dementia to recover from the effects of the pandemic, including rehabilitation to counteract effects on cognitive or physical functioning, support for mental and physical health, and speech and language therapy.

5. Social care services in the pandemic

5.1.   At the height of the initial wave of the pandemic, the Government took the step of cancelling planned care and moved to promptly discharge some people in hospitals into community settings, including care homes. This caused a strain on the community care sector, reducing its vacancy rate from a typical 10% to about 2-3%.[17]

5.2.   An Alzheimer’s Society survey of 1,800 carers and people living with dementia showed that 41% of people who received a care and support package had this reduced or stopped since lockdown began. However, over half of all respondents (57%) stated they did not receive these services in the first place.[18]

5.3.   Because of this many people affected by dementia have been struggling to cope in isolation, with even less support than usual to deal with the sometimes severe and complex care needs that dementia can bring.

5.4.   An Alzheimer’s Society survey, conducted in May of over 1,000 carers during lockdown revealed that 45% felt that the level of care needed by the person they looked after was greater than they were able to provide.[19]

5.5.   The Coronavirus Act introduced in March allowed councils to adopt easements to their duties under the Care Act. The purpose of this was to temporarily relax certain responsibilities in order to prioritise care during this period of significant pressure. These easements included reducing obligations to carry out assessments of people’s needs, to undertake financial assessments for care needs, to prepare or review care and support plans, or to undertake assessments of the needs of informal carers.

5.6.   This raised concerns that people with dementia may experience reduced support with potential for irreversible deterioration to their condition if their needs were not met. Alzheimer’s Society published recommendations for how to adopt Care Act easements appropriately if they are required in exceptional circumstances.[20]

5.7.   This included - ensuring that Information provided to people affected by dementia is inclusive, accessible and presented in a dementia-friendly format and that any change to someone’s care and support plan must happen through involvement with the individual and their carer.

5.8.   Alzheimer’s Society believes that care assessments that were not completed during the crisis must be completed in full once easements are lifted and councils should receive funding to enable this.

5.9.   This reduction in social care services meant that the strain was often picked up by informal carers. In an Alzheimer’s Society survey of over 1,000 carers of people with dementia conducted in August 2020,[21]it was found that 73% of carers reported that their caring responsibilities had increased during lockdown.[22]

5.10.                      According to the survey, on average informal carers spent 9.8 more hours a week than normal in their caring role during the pandemic. 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 during the pandemic. [23]

5.11.                      95% of carers reported that the increased caring responsibilities had an impact on their mental or physical health; 69% reported that they felt constantly exhausted, 64% felt anxious, 50% have developed problems sleeping and 49% felt depressed.[24]

6. Social care reform as we emerge from the pandemic

6.1.   Alzheimer’s Society has been calling for long-term social care reform as a part of our Fix Dementia Care campaign.

6.2.   Covid-19-has exposed how our fragmented social care system has failed to adequately support people with dementia. The need for social care reform is clear and urgent; it must be addressed within this parliamentary term.
 

6.3.   Alzheimer’s Society believes that a social care crisis is a dementia crisis – people with dementia are estimated to make up at least 70% of care home residents[25] and over 60% of home care recipients[26], so it is essential that their needs are fully considered.

6.4.   The challenges in the NHS and social care are interlinked and require a shared solution. People with dementia face avoidable emergencies due to falls, dehydration and infections because of scarce, inadequate and costly care. Our research has shown that 40,000 people with dementia were stuck in hospital for over a month in 2017/18 alone, at a cost of £165 million.

6.5.   Alzheimer’s Society are calling for care to be universal and free at the point of use. The additional costs of dementia-specific health and social care should not be funded by individuals but via a shared pooling of risk across society, just like education, the NHS, and other public services.

6.6.   Alzheimer’s Society believes that any proposal for long term reform needs to ensure that: care should be person-centred and include an element of choice; informal carers should be recognised as an integral part of the care system; there must be greater integration between health and social care; and there must be a minimum set of national standards.

7. Conclusion

7.1.   The coronavirus pandemic is having a devasting impact on the lives of people with dementia, with them being the worst hit group in the UK. This pandemic has shown the urgent need for reform of our fragmented social care system which has often left people with dementia and their families to suffer the harsh consequences of the pandemic. The Government must, as a matter of priority, put in place a rehabilitation strategy for people affected by dementia to enable them to recover from the effects of the virus and mitigate further decline. The Government must also put in place measures – such as a key worker scheme – to allow the safe meeting of people with dementia in care homes and their families.

(November 2020)