“It’s only recently occurred to me, since I started working with older adults in a hospital, just how much care families are expected to provide. I’m starting to get concerned that if I’m sick there will be limited support for me and I’ll get stuck in hospital for ages or have to live in a home. That frightens me”
– Ageing Well Without Children survey respondent.
This week on twitter, a post has been circulating containing a letter written by a 90-year-old person with Alzheimer’s requesting that her daughter be allowed to stay with her if she is admitted to hospital.
Please re-Tweet this reason why hospitals must allow family caregivers to be present when people with #Alzheimers disease and other forms of #dementia are being evaluated or receiving treatment and care. pic.twitter.com/v8UJAcd66A
— Ian Kremer (@LEAD_Coalition) April 6, 2019
It seems ridiculous that a case should even have to be made to allow people who live with Alzheimer’s or dementia to have their family with them in hospital. However, the fact that Johns Campaign exists shows that it was until recently far from the norm.
One of the many things that makes ageing without children so difficult for people to engage with is that, bluntly, thinking about it is hugely uncomfortable. We accept without question that if an older person requires treatment, it is undeniably better for them and for the hospital, that they have their family with them. It helps the person in hospital feel calmer, to recover quicker and improves their experience of being in hospital. It also enables the hospital to understand the person better and to get a rounded history of their health and issues. When it comes to discharge, they help oil the wheels of bureaucracy, by: passing information between different services (of course family members shouldn’t have to do this, but sadly communication between different parts of the care system is often poor); helping to arrange support; and making sure someone is there when the person goes home.
And yet, a barely a word is spoken about the experiences in hospital of people without a family, and many of those ageing without children are often without a partner/spouse as well. If we instinctively know that having family around helps when an older person is in hospital, it must follow that not having family around, for whatever reason, makes the experience considerably worse.
“Any illness requiring hospital treatment is also much harder without an advocate, preferably someone with an emotional attachment who is naturally disposed to fight for you through thick and thin”
– Ageing Well Without Children Survey Respondent.
The stories of those without family in hospital are rarely heard, rarely actively sought out. In almost all cases complaints about treatment are raised by family members, if you don’t have a family, there is no one to raise complaints. An older person, ill, isolated and worried in hospital with little or no external visitors is not likely to “make a fuss”. As far as we know there has been no research targeted at finding out about the experiences of people ageing without children in hospital.
As Ageing Well Without Children pointed out in our report “Our Voices“, those who are ageing without children remain an invisible group within the age sector. One of the key issues people talk about is the bafflement expressed by hospital staff when they say that “no they don’t have children” or “no they don’t have anyone”. Puzzled conversations along the line of “What… no one?! No one who can come?!” have been talked about in our local groups and online. Given the numbers of people ageing without children, it’s hard to believe that people not having family or family willing/able to help are so unusual and yet people in this situation are often made to feel as if they are a unique in not having support.
“I have a fear of being one of those old ladies in the hospital/care home who people feel ‘sorry for’ because she doesn’t have any family so she doesn’t get any visitors!”
– Ageing Well Without Children Survey Respondent.
Of course, not having family doesn’t mean a person may not have friends visiting and offering help. Often friends provide an enormous amount of support, but the crucial difference is:
- They’re not a relative and people have reported that the hospital simply won’t discuss any issues with a friend because they’re not the next of kin or related
- Friends often have their own families as well and cannot always give as much time as they would like.
However, it is also the case that some people in our groups have talked of having been in hospital and not having had a single visitor. There are a number of reasons for this, for example, as we age our friendship group can shrink. Meanwhile, people find that however much they want the simply make the journey to hospital as much as they would like.
How do we improve the situation?
- Greater understanding and awareness in hospitals that there are many more people ageing without children than ever before.
- Proactive identification of people without family
- An understanding that just because a relative can be found it does not mean that they know anything about the person concerned; a friend will know far more than a distant relative
- Greater investment in advocacy services
- Everyone both people ageing without children and those who do have family should be helped to plan for their later life including their wishes if they go into hospital
People ageing without children must be brought into mainstream thinking on ageing – and this includes hospital care. Only by working collectively, can we as individuals, communities and wider society address the needs of older people without children or any family support.