All watched over by social networks of loving grace

In the developed world, how we look after aging populations is rapidly becoming the most important policy issue governments face. Can technology help cure the social care crisis? Nick Ranger reports

My great aunt Bella is often on my mind. She’s in her mid 80s and lives in northern Scotland. She is deaf, doesn’t have a phone and wouldn’t be able to use it anyway. Her chronic mobility problems make her housebound. In and out of hospital regularly, she relies on her son-in-law Nigel, who lives in the next town, to do things like her shopping and taking her to appointments. She is a stubborn woman who values her independence, but needs the help of a small group of people to get through the day. And being based in London, there’s little I can do on a day-to-day basis to provide support.

In the UK there are millions of people in a similar situation to Bella and Nigel – about 7 million are family caregivers. In the USA that number is 40 million. Those people provide help and care to loved ones 24/7: administering medication, dressing, bathing, cooking, cleaning, providing transportation, talking and listening.

They are silent heroes. And while they are all doing something amazing every day, their situation isn’t sustainable, either for the caregivers personally or for society as a whole. As Gail Gibson Hunt, president and CEO of the USA’s National Alliance for Caregiving, says: “Not enough is being done to support family caregivers in the public or private sector. There’s a double-edged sword when we fail to support caregivers, because we put both the caregiver and the care recipient at risk.”

Beanpoles can’t shoulder the burden

As the baby boomer generation begins to retire, we are also witnessing a dramatic increase in both neurodegenerative disease and mental health issues, meaning that more and more older people will need some form of active caregiving, over and above the support we all might wish to have as we age. On current projections three in five of us will become carers at some point in our lives and in the UK, by 2030, the number of carers will increase by 3.4 million. In the US the ratio is expected to be four-to-one; by 2050, there will be fewer than three potential caregivers for every older American.

Meanwhile the shape of the family unit is changing. While the closeknit extended family is still prevalent in southern Europe and many developing nations, in northern Europe and North America, the more traditional family models we’re used to, the nuclear family and the micro family, are gradually being replaced by what sociologists call the ‘beanpole’ – families that remain close knit emotionally and communicate regularly, but are distant geographically, with younger generations often moving for work, even living in different countries, and so not close by enough to provide care.

There has also been, arguably, a change in what we give to and expect from the communities we live in. We know fewer people, and have less in common with our immediate neighbours. Combine this with a shift to the virtual communities we spend so much of our time in now, and effectively we aren’t in touch with the people who live around us like we used to be. Those who are lucky enough to have family members in their care network may get the help they need if they have their own Nigel living locally – but that network is shrinking.

Then consider those who need looking after. They often feel that they are self-sufficient and not inclined to ask for help – even when they may suffer loneliness and hardship – as they don’t wish to become a burden to someone else. So they suffer in silence.

Where we all labour

In the USA, the typical family caregiver is a 49-year-old woman caring for an older relative – but nearly a quarter of caregivers are now millennials and are equally likely to be male or female. Men, often stereotyped as failing to take on this particular responsibility, represent 40% of the caregiver population. About one-third of caregivers have a full-time job, and 25% work part-time.

If a caregiver is aged 75 or older, they are typically the sole support for their loved one, providing care without paid help or support from friends or relatives. A third provide more than 21 hours of care per week, have been caring for 5½ years and expect to continue for another five. Nearly half suffer high emotional stress and financial strain.

Source: AARP and the National Alliance forCaregiving; http://www.aarp.org/caregivingintheus/

The caregiving cliff

There is also a knock on impact on the workplace. The responsibility of caring for a loved one can become the equivalent of a second full-time job, and the burden of care has serious consequences for caregivers. Increased anxiety, stress, depression and lack of sleep affect caregivers at a higher than average rate. This means they too could become a burden on the healthcare system, other family members or are, at least, less productive at work. In the UK, the economic contribution of caregivers is £132bn annually. In the US, it tops $470bn (see page 38).

Which is where the state comes in. In the UK, social care is a legal responsibility of local government. And while funding of social care has been relatively protected in recent years, money for other services has been cut. There has been a 32% real-terms reduction in local authority spending on non-social care services between 2010-17. Libraries, youth services, sports facilities, parks, road maintenance, recycling and waste collection and many other ‘non-essential’ services have suffered, while social care costs continue to grow.

It is clear that the status quo is unsustainable in the long term. The AARP says that the US is “facing a caregiving cliff”. But radical changes in technology could mean that we are on the cusp of a solution.

Holistic helping

If we think about the social care problem as linear, there seems little opportunity to solve the crisis. But a number of businesses, apps and initiatives are taking a more holistic view, looking to use the power of online social networks to reconnect communities with people who need help the most.

Probably the first solution to try and tap into the power of the social network was Lotsa Helping Hands (lotsahelpinghands.com). Launched in 2005, it supports the creation of online caregiving communities through a simple calendar app, which allows caregivers and volunteers to provide assistance by providing logistical support.

Some newer apps are more narrowly focused, offering ways to organise your own tasks and those of your family. Carely (care.ly), for example, uses instant messenger functionality to co-ordinate family visits to a relative in a care home. CareZone (carezone.com/ home) helps caregivers organise files, contacts, medications, and provides a journal where this information can be shared with other caregivers. And the athenaWell app (previously Patient IO) allows patients to send secure messages to their carer teams, and track their health data.

But that doesn’t remove the need for a platform to pull everything together into one solution. So something like CircleOf (CircleOf.io) is a step forward. Launching this year, it’s a mobile app and care collaboration platform that will connect those in need to those who can help. Its functionality allows family, friends and co-workers to create a community of care. It will also have a marketplace that will integrate with Amazon, Lyft and other brands, so that groceries, hot meals and prescription medicines can be delivered, providing a rounded care solution.

CircleOf is attempting to make it easy to get help. The idea is that by using the power of a social network to arrange care, families can share the burden among a wider network. And by integrating a marketplace, it should become easier for carers to arrange for everyday events to happen automatically, further reducing pressure on primary caregivers.

As the baby boomer generation retires, more and more older people will need some form of active caregiving.

Unpaid, unlamented

40 m - Number of people who are the primary caregiver for family members

70 % - Percentage of working caregivers who have difficulty managing their job and caregiving responsibilities

$470 bn - Value of unpaid care provided by family members

126 m - Work days missed by family caregivers per year

$25.2 bn - Lost productivity

All figures for the USA. Sources: FCA Caregiver Statistics2015: Work and Caregiving https://www.caregiver.org/caregiver-statistics-work-and-caregiving; GALLUP

We should all be Nigel

While it’s possible to integrate several technologies around a collaborative social network to provide tools care givers need, the bigger challenge will be getting more people involved in actually providing care.

Social networks are great for bringing together like-minded people who share an interest. What remains to be seen is whether people outside a primary care network, family and immediate friends, will volunteer, or indeed whether the people most responsible will be comfortable opening up the care of their loved one to a wider network.

It feels like integrated social collaboration apps are a good starting point, bringing together local people and services to connect and support those most in need, ultimately putting them back at the centre of a community.

At one level they will have to, given the cliff edge care services face. And, if these tools get widely adopted, there are other questions that will need to be answered. Will the intimate details and data of individuals be protected? Will we need to vet volunteers joining care communities to ensure they are genuine?

It feels like integrated social collaboration apps are a good starting point, bringing together local people and services to connect and support those most in need, ultimately putting them back at the centre of a community.

But can our familiarity with social networks and the ease with which we can engage online, encourage us to volunteer and take responsibility in our offline communities? Can we transfer the power of social networks to create real community spirit around those in need?

If we can, then maybe social networks can transform social care. And perhaps the majority of us will be encouraged to do a little bit more to help carers and the people they love – people like Nigel and Bella.