Last week was Carers Week, an annual awareness raising campaign that highlights the vital role of people who care, unpaid, for family or friends. Carers Week also aims to promote ways in which carers can be better supported, which is particularly relevant for one group of carers who I feel are amongst the most marginalised in society – older carers.
While many people dream of retirement and ageing as a golden period in their life when they can pursue the hobbies they enjoy and where their time is truly their own for, potentially, the first time in their life, the reality for an increasing number of older people (70+, 80+ and beyond) is that they are taking on a new and very unexpected role – that of an unpaid carer.
Most commonly this would be for a husband, wife or partner, but potentially also for a sibling, a friend, a neighbour or even their own adult child. I personally don’t believe that there is an accurate figure for how many older people are carers. Age UK reported last month that 417,000 people aged 80 and over are carers (which equates to 1 in 7 people in this age group), with 144,000 of these individuals providing care for more than 35 hours a week. However, in common with the rest of the caring population, many older carers don’t identify as being ‘a carer’ and are therefore never counted in official statistics.
My concern is that because older carers may be even less likely to engage with carers’ organisations, both from the perspective of getting support but also participating in surveys/data collection etc, they are even more isolated and underrepresented than younger carers. There is also the double whammy effect at play – we know that as people age they can become more isolated and lonely. As a society we aren’t great at supporting our older population generally, but if you also happen to be a carer you are potentially in an even more marginalised position.
Then you can possibly add in the stigma associated with the various health conditions the person being cared for may have, which in many instances will include either suspected or diagnosed dementia. It is my view that people who care for a loved one with dementia are often even more isolated than other carers due to the lack of understanding about dementia, the complexities it can present, and the long-term, progressive nature of dementia.
Why I have a particular passion for raising awareness of the needs of older carers is largely because I’ve met so many of them. People who tell a tale, time and time again, of how they’d planned with their spouse of x number of years (usually a lot of years) to have a dream retirement, before the love of their life developed dementia and everything changed.
Some people remain upbeat, research the particular type of dementia their loved one has, access support independently of the health and social care systems, implement their own coping methods and get on with life. But many older people just don’t have the means to begin that crucial research process and access vital support, and life begins to unravel from there.
Much of the best support available is online, through social media for example, and the internet is an amazing resource for research and building knowledge and understanding, but it only works for you if you have a computer or device that you can operate, and access to broadband to connect you to this virtual world.
Again, some older people do, and I know from my own experience that my mum, who is in her mid-seventies, is a total convert and daily user of an iPhone and iPad. But her ability with these devices has been build up largely by living in a multigenerational household where us younger members can help her.
I suspect that my mum is in the minority though. Far more older people live alone, or are only living with the person they care for – they aren’t able to go out to classes to learn about technology, nor can they just pop down to the local library to use a computer if there is no one else to care for the person they are caring for. Leaflets in the GP’s surgery or a telephone helpline may bring more accessible support into their life, but the real issues go far deeper.
They can include denial, with some older people trying – with the best intentions – to cover up the health problems that their spouse is experiencing. This further isolates them from the help they need, and keeps other family members – for example adult children – in the dark. Frequently there are also financial concerns, with people worrying about paying for professional care (thus trying to provide more care themselves and often putting their own health at risk), and a lack of awareness about the assessments they are entitled to.
The very nature of ageing, where a person is likely to develop more health problems, means that older carers are at high risk of carer breakdown. The physical and mental rigors of caring for another adult mean a move into a residential care setting for the cared for person is very likely, particularly at known key-points of acute stress, for example if the cared for person becomes immobile or incontinent.
I suspect that all of this is just the tip of the iceberg though. I feel strongly that as a society we don’t know anywhere near enough about what being an older carer is really like, and because this group of people are more isolated than many others, their opinions and feedback on their experiences and views are rarely gathered systematically or on a large scale.
As a result we don’t hear their voices, and policies often don’t reflect the needs this group of carers have. I sincerely hope that the new Carers Strategy, which is due to be published later this year, will include key aspirations for supporting older carers, harnessing not just health and social care in joint endeavour but also engaging the wider community.
We all have a role to play in identifying and supporting older carers, and it can be in really simple ways. For example, on a few occasions I’ve printed off internet resources for older people who are caring for a loved one but don’t have access to the online world. On those occasions I’ve also made a point of ensuring I include information about carer’s assessments and carer’s allowance – even if a person doesn’t feel they want to have an assessment or apply for benefit at that time things can, and do, change.
As Sir Francis Bacon is quoted in saying in the maxim for his book, ‘Meditationes Sacrae and Human Philosophy’ that was published in 1597, “Knowledge is power.” And it is. Moreover, when it comes to being an unpaid carer, it should never just be the preserve of the young.