World Alzheimer’s month – we need to stop putting people ageing without children in the “too difficult” box
It’s World Alzheimer’s’ Month and of all the many concerns people ageing without children have, what happens if they get Alzheimer’s or dementia is one of the biggest; It also asks one of the most poignant questions; ‘Who will remember who I was when I don’t remember?’
” If I get dementia, who is going to tell the carers I don’t like sprouts and hate ‘Eastenders’? No-one is going to know, are they? And I won’t be able to tell them.’
Each of us has our life story: the person we were, the person we are, the person we will be. Often these life stories are preserved in the people around us – family and friends. But if we don’t have a family, and our friends are getting older and dying, who will remain to tell our stories? For people ageing without children, the awareness that there will be no one to do that leads to an immense feeling of loss, and lack of legacy.
Wonderful work has been done in the field of dementia by people living with dementia and their children, with the children helping to tell the story of their parents, and ensuring that they are seen by NHS and social care staff as people with a life history. Despite the high profile campaigns around Alzheimers and dementia, how the needs of people ageing without children with Alzheimers or dementia should be addressed has barely featured. Certainly no mainstream conference on Alzehimer’s has addressed the issue to our knowledge despite people ageing without children already numbering over 1 million people over 65.
Initial conversations with organisations working in the field suggest that most contact with people with dementia is via carers and therefore that if someone does not have a carer, they are hard to reach and involve. We understand this but surely this suggests it is even more critical to proactively find people ageing without children or family who also have Alzheimer’s? We know for example that people with Alzheimer’s or dementia are more likely to be in a care home, we also know that people ageing without children are 25% more likely to be in a care home than those with children or family. Surely this must suggest a grave need to reach out to care homes and find those hit by the double whammy of having lost the ability to live independently because of Alzheimer’s and also having no children or family to monitor their care and advocate for them? The same also goes for hospital care; there have been numerous blogs published from sons and daughters highlighting poor examples of care in hospital for their parents when they have Alzheimer’s. It is safe to assume that that poor care is equally affecting those without children or family, the difference is that there is no one to see it happening and bring it to the attention of the public.
People ageing with no children or family and with a diagnosis of Alzheimer’s or dementia must not be put in the “too difficult” box any longer. It’s time to act!
It is Carers Week, the time to highlight the work of the unpaid carers that prop up the health and social care system. Everywhere there are articles pointing out how much unpaid carers save the state and how much the system would collapse without them, which is 100% true. Without them services would implode under the weight of demand simply unable to cope with the sheer volume of people needing help.
Coincidentally, today the Guardian published an article based on a report from the Directors of Social Services saying that social care is on the brink of collapse https://www.theguardian.com/society/2018/jun/12/adult-social-care-services-collapse-survey-england-council There have been numerous news stories over the past few years arriving with increasing frequency and higher levels of alarm covering the problems facing social care; so far they have not made any appreciable difference in terms of any additional money on anything like the scale required being forth coming.
Here’s the thing; last year for the first time, the number of older people needing care outstripped the amount of family available to provide it. This “care gap” is only going to widen; 20% of people over 50 don’t have children, more single people are entering later life and 50% of all people over 75 live alone. At the moment the vast vast majority of unpaid care is supplied by family (92%) with the greatest % of that by partners and/or adult children. The older someone is, the more likely it is their carer is their adult child. Research shows that wider family networks such as siblings, nieces, nephews as well as friends do not substitute for a partner and/or child; the more care someone needs, the more likely those networks of wider family and friends are to fall away. Essentially, if someone needs help for a short period of time i.e. after hospital or only on an ad hoc basis e.g. the occasional lift to hospital, the wider network holds strong. However as soon as people start to need long term help and care or to need help and care multiple times a week, the network falls apart unable to cope. Bear in mind that nephews/nieces for example will have their own parents to think of while friends will often be in the same age bracket as the person needing help.
People ageing without children are more likely than those with family support to need paid social care. Ironically though they struggle to access it more as often they have no advocate to help them navigate the system.
It therefore cannot be overstated how much people ageing without children will suffer if social care continues to be destroyed. It is fantasy land nonsense based on an anachronistic view of society to expect as Government says repeatedly families to do more. By and large families already do an enormous amount most of which they wouldn’t even recognise as being vital, for people with no family at all or with family unable or unwilling to help it’s simply not an answer in any way shape or form. It is completely irresponsible to overlook older people without family support as is repeatedly the case in discussion on ageing.
As we celebrate carers week, remember that people ageing without children are 30% more likely to be carers for their own parents. Who will care for them when they need it is the biggest unaddressed question in social care and it cannot and must not go on being so
AWOC provides training to organisations to help them better understand and be equipped to help people ageing without children Contact us on firstname.lastname@example.org
Dear AWOC members and supporters,
Looking back at 2017, one of the most remarkable thing for us is that AWOC is still here. We started the year with high hopes of receiving a grant from the Big Lottery Accelerating Ideas programme, a process we had begun back in the summer of 2016.
However, much to our disappointment, we fell at the last hurdle with our proposal not being recommended to panel for funding. Having ploughed all of our time and meagre resources into the bid, the organisation was left in an extremely precarious position and for a time we thought we would have to close.
However, thanks to emergency grants from Independent Age and the Calouste Gulbenkian Foundation we were able to keep the organisation afloat and look at sustainability options.
PRAMA Care https://www.pramacare.org.uk/ then came to our rescue with a grant to develop AWOC awareness in Poole Bournemouth and East Dorset. We are also looking at other funding sources and options. More on that in the New Year.
However, the people most responsible for keeping AWOC going are the people ageing without children themselves. When we feared we were going to close, it was knowing how much people ageing without children needed a voice and an organisation that understood and represented their particular issues that strengthened our resolve to carry on. We received many kind messages of support and donations from members which really gave us the heart to continue.
Even though it has been a difficult year, we have continued, as far as possible, to continue to campaign for and raise the profile of ageing without children.
Here are some highlights from a year which started as an annus horribilis and turned into something of an annus mirabilis:
- We had an article in The Guardian at the beginning of the year:
- We were interviewed by BBC Radio York;
- Our Facebook https://www.facebook.com/groups/1476937045912974/?fref=nf group grew to over 1300 members and one of our key priorities for 2018 is to establish a new secure online forum for AWOC;
- We spoke at two conferences on issues around planning for care needs;
- We were quoted at length in Independent Age’s Doing Care Differently report https://www.independentage.org/policy-and-research/research-reports/doing-care-differently
- Sue Lister, who runs the AWOC group in York, organised a session on ageing without children as part of the York over 50s festival with Rachel Maskell MP, the Lord Mayor of York, local councillors, Dr Robin Hadley and AWOC all speaking. Sue, who was awarded an OBE this year, has also written a play on ageing without children which will be performed as part of International woman’s week in March;
- The AWOC group in Leeds organised two seminars, one on legal issues with Blacks Solicitors and one on housing options with Care & Repair, Methodist Homes, and Leeds City Council Home share scheme;
- In Brighton, there were talks on Financial Planning from McClure solicitors, Planning Health and Welfare LPAs from Compassion in Dying as well as social get-togethers;
- There were also AWOC get togethers in Norwich, Oxford and Ireland.
Our plans for 2018 include:
- A national conference
- The production of a toolkit on how to create ageing without children awareness in organisations and communities;
- Resources for people wanting to set up AWOC groups;
- Development of a membership model; and
- A new online secure platform for AWOC members.
We would like to wish everyone a very Happy Christmas and a peaceful 2018. We look forward to seeing you all again in the New Year