Why a reformed social care system in the UK cannot wait

There are an estimated 850,000 people in the UK living with dementia. Someone develops the condition every three minutes, and there is still no cure. Dementia robs people of their memories, relationships and identities and devastates the lives of those around them.

Dementia itself is not a disease, but the name for a group of symptoms commonly including problems with memory, thinking, problem-solving, language and perception. It is caused by different diseases that affect the brain, with Alzheimer’s disease being the most common. Other common types of dementia include vascular dementia and dementia with Lewy bodies.

The need for a reformed social care system

The number of people living with dementia in the UK is set to rise to 1.6 million by 2040, making it one of the biggest health and social care issues facing the UK. While researchers around the globe work tirelessly to find treatments and cures, the reality is that good dementia care is vital to the vast number of people living with this condition now.

If you develop cancer, heart disease or diabetes, you are supported by the NHS free of charge, but the typical care costs for people with dementia can be £100,000.(1) This financial burden is shouldered by the person living with the condition, or the 1.8 million devoted family members and friends who act as unpaid carers, plugging the gaps of an ailing social care system.(2) The human toll cannot be underestimated; we hear from those forced to choose between a hot meal and a wash during home care visits, or people forced to sell their homes to pay for care.

Sadly, the coronavirus pandemic has further exposed how threadbare our social care system is. Our September 2020 report, ‘Worst Hit: dementia during coronavirus’,(3) highlighted the drastic toll of the pandemic. Dementia was the most common pre-existing(4) condition in deaths involving COVID-19, and there was a stark rise in deaths from dementia itself: the Office of National Statistics reported that, in comparison with the five-year average, deaths from dementia and Alzheimer’s disease in private homes increased by 79.3% over 28th December 2019 to 11th September 2020.(5) Many others saw their condition worsen due to social isolation and interruptions to health services caused by lockdown.

At least 70% of care home residents have some form of dementia(6), so when coronavirus spread like wildfire through care homes in March and April 2020, people with dementia were disproportionately hit. Social care was not placed on an equal footing with the NHS and not prioritised for COVID-19 testing and personal protective equipment. Regular testing for staff and residents was not announced until 3 July, and there were significant delays in the rollout of this scheme. Of all deaths registered as COVID-19 related in the UK during the pandemic period, at least 21,775 (40%) were care home residents.(7)

Outside of care homes, around 400,000 people with dementia live in the community(8), many of whom receive professional home care services to support with medication, washing and eating. However, a staggering one in three home care workers have no dementia training.(9) This failure to recognise the value in supporting more people with dementia to remain at home for longer, where many of these people would rather be, results in avoidable hospital or care home admissions. It also puts pressure on family members and friends to fill the gaps, shouldering unpaid care to support their loved ones.

76-year-old Gordon Weldon from Scarborough, who was diagnosed with prostate cancer last year and cares for his wife Sue with Frontotemporal dementia, has lost the paid carer who visited an hour a day and Sue can no longer attend a daycare centre four days a week. Gordon said: “The carers used to really help with my stress, giving me some time off to look after my own health. But when lockdown hit, I stopped getting that care and the day centre closed. It was all on me, and I didn’t want Sue sitting in bed all day. So, I took it all on – the morning getting up, cooking all the meals, all the washing, the housework. Sue’s not able to do anything for herself now, so it was exhausting and I began to feel very depressed.”

Over 112,000 people have left their jobs to care for loved ones with dementia, a loss of workforce, which will cost businesses as much as £6.3 billion a year by 2040.(10) Coronavirus has amplified this precarious situation(11) with worrying results – 73% of carers we spoke to reported that their caring responsibilities have increased during lockdown.(12) In addition to this, 82% of people affected by dementia reported an increase in dementia symptoms.(13)

Lessons to be learnt from COVID-19

Nobody could have predicted the scale of the coronavirus pandemic, but lessons must be learnt. The Health and Social Care Select Committee’s acknowledgement that social care needs an extra £7 billion a year to work effectively is positive, but people affected by dementia need urgent action to make up for decades of neglect. In the short-term, the UK Government must set out a clear strategy to help people affected by dementia 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. And if we are to protect people with dementia from the same fate, the Government must commit to long-term reform of the UK’s creaking social care system so that it becomes available to all and free at the point of use, funded in the same way as the NHS, education and other public services.

References

(1) Alzheimer’s Society, 2017.

(2) CEBR, 2019.

(3) Alzheimer’s Society, 2020 https://www.alzheimers.org.uk/sites/default/files/2020-09/Worst-hit-Dementia-during-coronavirus-report.pdf

(4) Over March to June we saw 13, 840 deaths of people with dementia involving COVID-19 in England and Wales, making dementia the most common pre-existing condition in deaths involving COVID-19.

(5) Office for National Statistics: Deaths in private homes, England and Wales (provisional): deaths registered from 28 December 2019 to 11 September 2020 [Online] 2020.https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/articles/deathsinprivatehomesenglandandwalesprovisional/deathsregisteredfrom28december2019to11september2020

(6) Alzheimer’s Society. Dementia UK: Update. [Online] 2014. https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/dementia_uk_update.pdf

(7) Bell, D et al. COVID-19 mortality and long-term care: a UK comparison. [Online] LTCcovid, 2020. https://ltccovid.org/2020/08/28/covid-19-mortality-and-long-term-care-a-uk-comparison/ Pandemic period is defined as lasting from week 11 (ending 13th March) in England up until week 26 (ending 26th June).

(8) The costs of dementia in England, Wiley Online Library https://onlinelibrary.wiley.com/doi/full/10.1002/gps.5113

(9) Alzheimer’s Society, 2016. https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/fix_dementia_care_homecare_report.pdf

(10) CEBR, 2019.

(11) 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.

(12) Alzheimer’s Society. Survey: Caring for a person living with dementia during the COVID-19 pandemic. [Online] 2020. https://www.alzheimers.org.uk/COVID-19-report-news

(13) Alzheimer’s Society. Alzheimer’s Society online survey: The impact of COVID-19 on People Affected by Dementia. [Online] 2020. https://www.alzheimers.org.uk/news/2020-07-30/lockdown-isolation-causes-shocking-levels-declinepeople-dementia-who-are-rapidly