Now more than ever, writes author and consultant Deborah Stone, it is essential to recognise the pressure being placed on family carers of older people. That means it’s time to look hard at alternative solutions, as well as families having meaningful conversations at the right time…
Everyone knows that the care system has never been under more strain. But, as well as concentrating on the critically important needs of older people (which are often multifaceted and complicated, and which change over time) many of their informal carers are also at breaking point.
It’s a challenge that’s only going to grow. In rich countries the share of the population over 80 will double by 2050, by which time there will be only two people of working age for everyone over 65. Moreover, while people’s lives are getting longer, the number of years they spend in ill health is increasing. Most people over the age of eighty will need help at some point with basic fundamentals – washing, dressing, and cooking. Some will have physical issues and mobility problems, some will suffer from dementia, some will sadly be afflicted by both.
In countries such as Norway and Sweden, care for the elderly is pretty good, but costs taxpayers so much that it may not be sustainable. In others, such as Britain and America, taxpayer-financed care in a care home is intended as a last resort for the poorest and sickest.
Amidst all these pressures, it is worth noting that access to good-quality care is not necessarily easier or better for people who self-fund. Self-funders typically seek out and organise their own care, which can be a complicated and stressful process, and they are often charged more for their care to compensate for reduced local authority fees. The ONS estimates that in 2021/22, 28% of recipients of community-based care services for older people and those providing dementia care were self-funders, as were 39% of care home residents in England.
The scale of the carer challenge
As access to formal care becomes increasingly problematic, more and more is being provided by family members.
In 2021, an estimated 1.4 million people in England provided informal care for over 50 hours a week, up from 1.3 million in 2011. Approximately one million people provided care for between 20 to 49 hours, up from just over 700,000 in 2011. This demonstrates a move towards unpaid carers supporting people with high care needs who may have been able to rely on formal care in the past.
The pandemic has clearly contributed to additional pressures on unpaid carers as the provision of services decreased and patients were rapidly discharged from hospital from March 2020. Directors of Social Services have reported rising referrals and requests because of breakdowns in unpaid care arrangements.
Some 245,820 adults were waiting for a care assessment as of August 2022, with an additional 29,570 people waiting for care, support, or direct payments. Waiting times for care assessments are long. An estimated 33% of adults were waiting over six months in August 2022, up from 20% in November 2021. This is partly due to pent-up demand due to the pandemic, as well as a decline in the numbers of local authority staff giving advice or carrying out assessments, as well as a lack of capacity within care providers to take on new clients.
Insufficient social care capacity also means that people admitted to hospital are waiting for social care support which would allow them to be discharged, either to a care home, a home with support, or for short-term rehabilitation in a community hospital. Delayed discharges are becoming an increasingly significant issue with adverse consequences for patient outcomes and NHS capacity. In December 2022, 18% of patients delayed in hospital were waiting for a care or nursing home bed, 22% were waiting for a short-term bed, such as rehabilitation, and 25% of patients were waiting for a home care package.
An increasing number of care requests result in no care being provided (27% in 2021/22 compared to 23% in 2017/18), maybe because people do not meet the needs threshold, or because of a lack of available services due to workforce or cost pressures. Increasingly tight council budgets have resulted in a less generous system, and the means thresholds have not risen in line with inflation, so fewer people qualify for publicly funded care.
In addition, local authorities are shifting to more asset-based assessments to make savings, leaving older people either increasingly reliant on families, neighbours and volunteering services, or simply not getting care at all. Despite relatively stable levels of need for social care relative to the older population, the number of older people approaching their local authority for publicly funded support is increasing and the social care system is struggling. The growing number of older people means that the number requiring support is increasing.
A global perspective
Staffing shortages hinder the ability of care providers to return to the same level of services seen pre-pandemic, or to accept new packages of care or care home residents. In addition, the cost-of-living crisis has placed additional pressure on providers, who are increasingly going out of business, with knock-on effects on the NHS.
But some of the challenges are not restricted to the UK. In fact, all around the world staff at care homes turn over quickly. In Germany nearly a third of long-term-care workers leave their jobs after only one year. In France, a fifth of home-care positions remain unfilled. Carers are paid on average 35% less than people who do similar jobs in hospitals, according to the OECD.
Receiving care from too many people is a particular problem for people with dementia. They make up the majority of care-home residents but mostly do not live in institutions that specialise in their condition. At the height of the pandemic in London more than 25% of staff in care homes for the elderly could not work, or would not work. Officials sent in temporary workers to replace them, which added to residents’ confusion.
Many governments across the world spend little on long-term care. For example, Hungary spends just 0.2% of GDP compared to the Netherlands at 3.7%. Canada spends 1.3 and has less than half the number of care-home workers per 100 residents than Norway. America and Britain typically reimburse less than the cost of residential care. American nursing homes actively recruited patients covered by Medicare, who tended to come for short stays to recover after operations , but the pandemic has put a halt to most of that.
Better systems and planning are urgently needed to make it easier for most people to age at home and to support their family carers. Technology helps and can potentially do a great deal more. The urge to move someone to a care home often starts with concerns for their safety. Carers worry about falls and forgetfulness, with medication not taken or taken too often. There is a great deal of technological support available to help people at home via technology, both older people and their carers, such as fall sensors and smart pill dispensers.
Increased levels of innovation are on the way, including the use of robots. But how much will this cost and how much of it will be in reach of the average family in need of it? So much more investment is required.
Learning from other models
New models of care need to be considered based on the community. Buurtzorg, a nursing provider in the Netherlands, sends small teams out to care for a neighbourhood. Nurses spend more time dispensing help locally in an organised manner. Day-care centres can help too, especially with loneliness.
Some in Switzerland pick people up from their homes, help them get dressed and return them home again. In Sweden, elderly day care is offered by the state, in the same way that childcare is. Chile has made day care for the elderly a priority. Day care services can improve older people’s mental and physical health, as well as offering advice and respite for their families.
In Denmark, the government spends more on non-residential care than the residential sort, including retirement communities and flats built close to but not in care homes. Authorities in other countries are trying to make it easier for families to build granny flats for older relatives. Home sharing with younger people is also growing to provide companionship and care.
The Hogeweyk in the Netherlands is home to 169 residents with advanced dementia, who live in six-bedroom houses. They move around campus, which includes a high street with its own pub, hairdresser, and supermarket. Residents bring their own furniture and pets, help with household chores, and enjoy activities at social clubs.
In rich countries, up to one in four people over 50 provide care to another person at least once a week. Maintaining the physical and mental health of these carers is key to helping people age at home. If the carer wears out, they can no longer help their older relatives and fall ill themselves. The number of older people approaching their local authority for publicly funded support is increasing and the social care system is struggling to keep up with demand.
A growing number of older people in the population means that the number of people requiring support is increasing, even though today’s older people live without care needs for longer than previous generations. Access to and provision of publicly funded care has become worse over the past seven years, with thousands waiting for assessments and waiting for the care they need to begin. As I set out at the beginning, it is often the carer who is expected to fill the gaps – and they too are not always in the best of health.
Whilst all of these issues are urgent – and in the UK, we hope and pray for a sustainable resolution to social care – planning within the family can really help. Having the relevant conversations with older relatives, as well as with your partner, can prove hugely helpful when crises eventually strike.
If you need further information on all aspects of care for older people and their families, I have set these out in The Essential Family Guide to Caring for Older People, available in paperback, Kindle and Audible. I wrote it after working for many years in the care sector and based very much on my own experiences of caring for my father who suffered from dementia and subsequently for my mother over the following twenty years, who sadly died of Covid during the pandemic.
Deborah Stone runs www.maturethinking.co.uk. As well as an established author, she is also a highly experienced consultant and marketer with a profound understanding of how to target the older market in order to maximise sales and profit.
Sources: Social Care Institute for Excellence, The Economist