Ageing Without Children

AWOC THINKS…..

Designing care services and systems that don’t rely on family to make them work

Our blog for Independent Age’s Doing Care Differently series

https://www.independentage.org/policy-and-research/doing-care-differently/designing-care-services-that-dont-rely-family-kirsty-woodard

AWOC Resources

Resources to help you know more about AWOC’s work and ageing without children

Report of our first conference in 2015

Report of first Ageing without children conference

Survey of people ageing without children 2015

awocsurvey15

Our Voices – the experiences of people ageing without children 2016

Our Voices Final Report

Our Voices Summary Final

Summary of second AWOC conference 2016

 

conference summary (1)

Estimates of people ageing without children by local authority in the UK

awoc-ons-2015-population-data-mye2_population_by_sex_and_age_for_local_authorities_uk_2015

Dignity in Dying & Ageing without Children

Guest blog from Jill Lamede http://www.lamede.com/

Dignity in Dying

What is death? It is the moment of transition – the natural full stop to a life. It is something we must all experience. We can choose to fear death – but that fear can poison our lives. Better that we should accept that death will come – to each of us and to those we love. Death is not a failure… it is a completion.

What is dying? It is the process that leads to the moment of death. This is what most of us fear… the pain… the indignity… the years of hell, trapped in an unresponsive body with a failing mind…. watching family and friends suffer on our behalf as they struggle with the costs, bureaucracy and exhaustion involved.

It doesn’t have to be like that. The Aborigines in the Bush deal with the process of dying quite simply. Each person knows instinctively when they have come to the end of their journey. They hold a farewell party and then calmly walk out alone into the Bush, sit down and wait for death to arrive.

Obviously this would not be a practical approach for western civilisations – but we could do things better than pushing those who can afford it to travel to Switzerland for a possibly premature assisted suicide.

First – we need to be less afraid of death. It will happen – we cannot avoid it forever. Doctors must accept that they do not need to prevent patients from dying when there is no hope of recovery.

Second – we need to know that a diagnosis of a terminal illness means that, when we feel we have reached the end of our journey, we will be offered palliative treatment that relieves pain and provides calm and relaxation and acceptance… even if it also allows us to die more swiftly. We must be permitted to refuse treatment that merely prolongs a painful and useless existence.

Old Age

Dignity in Dying as a campaign is focussing on the rights of the terminally ill. That must be just a first step. Next we must accept that extreme old age is also a terminal illness. Our current treatment of the very old is horrific.

My mother died at the age of 91. For several years she had been becoming increasingly blind, deaf, confused and incontinent.  As all her faculties gradually disappeared she became increasingly depressed and tried several times to take her own life – but she had already lost that capability.

For the last 3 years of her life she needed 24 hour care. She became so confused she kept getting lost in her own home – unable to find the bathroom – not knowing if she was upstairs or down  – unable to get up again when she fell over (a frequent occurrence). The GP offered lots of medication to keep her alive – but nothing that might make her life tolerable. He pointedly told her that none of  her medication was strong enough to be used for suicide.

The Carer

Our current system of coping with the old and the dying leaves the main burden of care on the family.

In my own case, after caring for my husband, I then had to care for my mother – eventually giving up my own life to move in with her and be ‘on duty’ 24 hours a day – every day – for 3 years.

On one occasion when a urine infection combined with an unfortunate change of medication and an overdose of sleeping pills, my mother was rushed into hospital at night. She was discharged the next morning, despite my tears and pleas that I be allowed at least one night’s unbroken sleep. I was obviously absolutely exhausted – but I was told to take her home and someone would come to see me in a day or so.

The final straw came when, after taking the dogs for a brief walk, I returned to find water pouring through the ceiling. I dashed upstairs to find my mother lying naked on the bathroom floor with the bath, taps full on, overflowing around her. She had tried to drown herself but fell while trying to get into the bath.

I immediately contacted Social Services, the GP and the Community Nurse. They rushed to make sure my mother was still alive – and then just left me to cope once more.

But I couldn’t cope.

I had been offered some work, just 2 days a week, that I really wanted to do. So I informed Social Services, the GP and the Community Nurse that I would be going back to work on the Monday. I organised a steady rota of carers, both professional and amateur, so that my mother would never be left on her own for more than a few minutes.

The work helped restore my sanity and confidence – but when I returned home that first day, I found the house empty. There was a scribbled note saying that my mother had been taken to hospital as a place of safety. Her condition had not changed in any way, but the fact that I was not there and the Community Nurse had to deal with her falling and incontinence meant that the situation was at last taken seriously.

My mother was a bed-blocker for 4 months – clearly very distressed but never given any palliative care to help make her existence bearable. Hearing aids were lost or fitted with dead batteries so that her isolation was complete. Her complaints of discomfort and a throbbing under her diaphragm were simply dismissed as imagination.

I visited her every day – the one bit of brightness in her life.

When at last she was transferred to a nursing home she died within hours of a burst abdominal aortic aneurism. Of course her discomfort had been real and could have been eased. But no one believed her.

Ageing Without  Children

There are hundreds of thousands of us – and the number is growing. We have done our share of caring. We have saved the country uncounted  £billions in care costs. Now each of us is alone.

We may never have been fortunate enough to have children. Our families have died before us – or are estranged – or living overseas. We are facing a dreadful future.

We know how hard we had to fight to get the help, financial and practical, that our loved ones needed as they approached their deaths. Who will now fight for us?

Unless I die suddenly from an accident, heart attack or stroke, I anticipate that, as I become incapable of coping at home alone, I will be shoved into the cheapest available care home – all my possessions sold to cover the costs – and simply be left to rot.

Yes… I am angry…

and…  I am afraid.

Finding ways forward

 

Context

The numbers of people over 65 without adult children are set to double from 1.2 million at the present time to 2 million by 2030. At the moment 92% of informal care is provided by family [1]and 80% of older people with disabilities are cared for by either their spouse or adult children [2]. The older a person is, the more likely they are to be cared for by their child. However, the number of older people with disabilities who live alone and have no child is also projected to increase rapidly, rising by nearly 80 per cent between 2007 and 2032[3] This year for the first time, more older people need care then there is family available to provide it.

“As the baby-boomer generation ages, a growing ‘family care gap’ will develop as the number of older people in need of care outstrips the number of adult children able to provide it. This is expected to occur for the first time in 2017” The Generation Strain, Institute of Public Policy Research 2014

Successive Governments have failed to get to grips with the issue of both how to fund social care and ensure that it is of a good quality. This coupled with the austerity programme of reduced public spending has resulted in fewer people receiving social care [4]and Government policy insofar as it exists has been to focus on families doing more. Little thought has been given what happens to those older people who have no children (or other family) to help and support them in later life.

 “We need to start thinking as a society about how we deal with care of our own parents. One of the things that has struck me as I’ve been doing this role is that nobody ever questions the fact that we look after our children, that’s just obvious. Nobody ever says it is a caring responsibility, it’s just what you do. I think some of that logic and some of way we think about that, in terms of the sort of volume of numbers that we are seeing coming down the track, will have to impinge on the way we start thinking about how we look after our parents. In a way, it is a responsibility in terms of our life cycle that is similar.” [5] David Mowat Minister for Care January 2017

“Family planning must be as much about care for older generations as planning for younger ones. A wholesale repairing of the social contract so that children see their parents giving wonderful care to grandparents – and recognise that in time that will be their responsibility too” Jeremy Hunt Secretary of State for Health 2015 [6]

So far, the growing numbers of people without family has not appeared on the radar of social care policy at a national and often local level. There is no current evidence to suggest that criteria to access social care will be loosened or that there will be a significant boost in social care spending during the lifetime of this Parliament. Despite the fallout from the so called dementia tax, Government is likely to focus policy on individuals with assets funding their own care rather than raising taxes nationally.

Access to family care for people ageing without children

Research has shown that people ageing without children are less likely to have informal care support when their health deteriorates

“The absence of children is not clearly associated to a disadvantaged situation when health is good, but when someone becomes frail and loses their independence in carrying out daily living activities, childlessness becomes a problem. The worst situation in terms of the availability of informal support is clearly that of the frail elderly who are both childless and unmarried or widowed, especially if they are men” [7]

Furthermore it has also been demonstrated that extended family e.g. siblings, nephews/nieces, cousins, friends and neighbours do not make up the care deficit if one does not have a nuclear family. Essentially, the more support a person needs, the less robust their support network is in being able to meet their needs

“Childless people tend to compensate for the absence of exchanges with their own children by more frequently extending their networks to neighbours and friends, and by getting more involved in community activities. They also tend to develop stronger ties with other family members – parents, siblings and, along the generational line, nephews and nieces………However when strong support is needed, these compensatory arrangements work only partially. When getting frail and acquiring limitations in their ability to carry out the activities of daily living, childless people receive much less support than parents, are more likely to enter residential care, and do so at lower levels of dependency”[8]

The lack of informal care has an inevitable knock on effect to formal care; evidence shows that older people without children and especially those who are widowed are more likely to need formal care services [9]  People ageing without children are 25% more likely to enter into residential care [10] which given the limited alternatives to residential care that exist in the UK and the precipitous state of the residential care market is extremely worrying.

However there is evidence to show that although individuals ageing without children do use formal care more than those with children, it is a more complex picture than one would expect

“Two of the very few studies on the utilization of formal care services by the childless clearly indicate that elderly nonparents tend to use formal service provision more frequently and intensively than parents do. But the same studies also show that the utilization of public care services by the elderly is strongly mediated by the presence of children, who act as advocates on behalf of their parents (Choi 1994; Larsson and Silverstein 2004)….. As a consequence, the utilization of public care services by the childless do not fully compensate for the support deficits they face”[11]

It has been established that people ageing without children often have poorer health and higher mortality rates than people with children  [12] [13] Poor health is the key determinant in whether people need care and support in later life. It may therefore be the case that people ageing without children are more at risk of failing health in later life than those with support from children. If this is the case, then they are more likely to need care and support

Solutions

It can been seen from above that

  • People ageing without children have less access to informal care support
  • Networks of friends/neighbours/wider kin do not substitute in intensity of support for adult children or partners. There are particular issues for the single/windowed ageing without children
  • People ageing without children are more reliant on formal care but can have greater difficulties accessing it
  • Poor health is the key determinant in needing care
  • People ageing without children more likely to drink more, smoke more and be underweight
  • People ageing without children 25% more likely go into residential/nursing care

What needs to happen?

  1. Existing service planning and provision must take into account the growing numbers of people ageing without children and adapt accordingly
  2. People ageing without children need support to plan and prepare for their later life.
  3. The capacity of advocacy services must be increased
  4. There need to be co living solutions including co housing
  5. There need to be local groups for people ageing without children

Conclusion

People ageing without children who need care and support in later life face significant barriers including

  • No one to play the role of advocate to speak for them and curate care
  • Lack of informal support networks compared to those with children
  • Shrinking state provision

To overcome these hurdles, people ageing without children need targeted interventions that accommodate the lack of family support available to them. Failure to tackle the issues raised will lead to increased use of health and social care services and a considerably poorer later life for individuals without children.

 

[1] Measuring National Well-being – Households and Families, 2012 Ian Macrory: Office for National Statistics

[2] Hoff A, Current and future challenges of family care in the UK. Zittau/Goerlitz University of Applied Sciences,2015.

[3] Pickard, Linda et al Mapping the future of family care: receipt of informal care by older people with disabilities in England to 2032. Social Policy and Society, 11 (4). pp. 533-545. ISSN 1475-746

[4] Age UK Briefing: Health and Care of Older People in England 2017

[5] http://www.telegraph.co.uk/news/2017/01/31/parents-responsible-care-elderlymothers-fathers-much-children/

[6] https://www.gov.uk/government/speeches/personal-responsibility

[7] Childlessness and support networks in later life: a new public welfare demand? Evidence from Italy

Marco Albertini Letizia Mencarini 2011

[8] What Childless Older People Give: Is the Generational Link Broken? Albertinin M and Kohli M Ageing and Society 29(08):1261 – 1274 · November 2009

[9] Wenger, C. G., Dykstra, P. A., Tuula, M., & Knipscheer, K. (2007). Social embeddedness and latelife parenthood: Community activity, close ties, and support networks. Journal of Family Issues, 28, 1419–1456. doi:10.1177/0192513X07303895

[10] Childlessness at the end of life: evidence from rural Wales WENGER G. Clare Ageing and Society, 29(8), November 2009, pp.1243-1259.Cambridge University Press

[11] Childlessness and support networks in later life: a new public welfare demand? Evidence from Italy Marco Albertini Letizia Mencarini 2011

[12]  How Does Childlessness Affect Older Americans’ Health Status and Behavior?  Robert D. Plotnick  February 2011  Daniel J. Evans School of Public Affairs and  Center for Studies in Demography and Ecology  University of Washington

[13] Modig K, Talbäck M, Torssander J, et alPayback time? Influence of having children on mortality in old age J Epidemiol Community Health 2017;71:424-430.

 

People ageing without children are 25% more likely to go into a care home – but who is there to speak for them?

I didnt watch Disptaches last night. The programme an expose on abuse and poor practice in BUPA care homes was another in a very long line of documentaries highlighting the appalling treatment of older people in some care homes. This should no longer be news to anyone but regularly as clockwork every year or two, another one will come round, people will be shocked, hands will be wrung, something must be done people will say and then that’s it till the next

People ageing without children are 25% more likely to end up in a care home. 25% more likely to end up in a system where if you don’t have anyone to speak for you, someone who actually cares about you and not just for you, you’re likely to be at the bottom of the pile. Bluntly those most likely to be speaking for you when you are in a care home are your partner/spouse (but as most people in care homes are over 85 the reality is they may not be around anymore or in a position to advocate), or your children or grandchildren.

If you don’t have those, who is there for you? The only answer is advocacy but advocacy in this country is scandalously underfunded and over stretched. Projects have been struggling for years to get funding with schemes closing or merging all over the country. Local authorities already struggling with austerity have focused increasingly on funding advocacy which is required by law such as independent mental health advocacy (IMCA) or advocacy under the care act 2014. General everyday on going advocacy is harder and harder to fund. Ironically of course this is now the time when it is needed more than ever. 1 million people over 65 in the UK already don’t have children and by 2030 this will double to 2 million. We are not in any way ready to deal with this as planners, policy makers, providers or as a society.

I don’t want to finish my life in a care home but frankly with no family to help to support me, I know it’s very likely. I don’t want to spend the last years of my life miserable, afraid and ignored knowing that even if anyone did notice how I felt, no one would care.

With social care at last near the top of agenda and with finally some public understanding of what it means, now is the time to do something, because if not now then when?

The first step to find solutions for people ageing without children is to include us in mainstream thinking on ageing

“older people and their families”, “older people and their relatives”; in all the coverage of the so called dementia tax and the spotlight on social care, older people were entirely bracketed with their family or relatives. AWOC believes we all know what is meant when media coverage or policy reports talk about family; they mean spouses/partners, children, parents. When the newspapers talk of older people having to “sell the family home” what they mean is the home where they would have raised their children, that’s why it’s so emotive.

Numerous think pieces and blogs have been published about social care both before, during and after the election. All of them refer to older people and their families. Not a single one that we have found mentions even in passing older people without family. It remains an invisible issue as we pointed out in “Our Voices”

AWOC is often told that we need to come with solutions; don’t bring more problems we are told, bring solutions. We have offered solutions; in “Our Voices” published in 2016 we list the following

  • Ensure that central government planning on ageing takes into account that increasing numbers of people will get old without family support.
  • Require local authorities to identify how many people in their area are likely to age without children and incorporate this into their strategies on ageing.
  • Enable GPs, hospitals and social care services to identify people without family, to provide support or care at an early stage and to guarantee involvement of other services to ensure they are not left without support.
  • Invest in intergenerational programmes and activities so that people ageing
  • without children still have the possibility of engaging with other generations.
  • Offer advice and assistance to everyone over making plans for their later life that take into account what will happen if they do need care or lose capacity to make their own decisions.
  • Develop a national strategy for people ageing without children that brings together individual people and Ageing Without Children, along with national and local Government, the NHS, housing providers and key bodies from civil society.
  • Create social awareness around the issues of ageing without children.
  • Provide education and training to service providers who will be working directly with older people without children. It is vitally important that those who write policy, plan services and work directly with older people understand all of the issues associated with ageing without children.
  • Campaign for the National Census to collect childlessness data for men, as well as to record the reasons why both men and women are ageing without children.
  • Explore the feasibility of creating a national online hub and telephone service that would link all the currently available services (both government and independent) that are available to adults ageing without children.
  • Look into currently existing advocacy services for older people and see how they
  • might demonstrate best practice in creating a national network of advocates for people ageing without children.

 

However, it is not just AWOC’s job to do this. Everyone working in the age sector should be thinking about it and ensuring that people ageing without children are incorporated into all that they do.

We are told that AWOC has been very influential which is really good to hear but being honest it doesn’t seem to have translated into much change on the ground. Reports regularly refer to older people and their families and don’t acknowledge the existence of older people without family. It’s not covered on conference agendas, the data on people ageing without children remains difficult to find e.g. why when the role of family is acknowledged as crucial in hospital discharge for example, is it impossible to find the numbers of older people discharged who don’t have family?

AWOC can propose solutions but has zero resources to implement them and we have to rely on others to take them up.

If AWOC is unable to find funding it will close in September and we are thinking about our legacy. We hope that if we don’t survive, others will take up the banner but at the moment it feels that people ageing without children are still very much on the periphery. We hope that this will change; helping people ageing without children is an issue for all the age sector, not just AWOC.

When older people have no children who will help?

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. There are many wonderful campaigners – Beth Britton http://d4dementia.blogspot.co.uk  Nicci  Gerrard and Julia Jones  of Johns Campaign http://johnscampaign.org.uk , Gill Phillips http://nutshellcomms.co.uk to name only a few who have taken the poor experiences and treatment of their parents and used them to campaign to improve the experiences of all older people. As you read the stories of what happened to their parents and the things they had to do, it’s easy to empathise and think how you would feel if it were your parents going through the same thing. Its harder to start to think about, in detail, what happens to people with no one to fight for them

Last year my mother in law very sadly died of cancer at the age of only 64. What was thought to be just an isolated mini stroke turned out to be a side effect of stage 4 lung cancer which had already spread to her brain During the 4 months from diagnosis to her death 4 months later, I witnessed firsthand just how much my husband and his sister did to help

  • Going to the hospital when she was admitted via ambulance after having a mini stroke at the GPs surgery
  • Being with her when she was given her diagnosis (the hospital told her they wanted someone with her when she was told)
  • Liaising with the ward staff, social services and the red cross about her discharge
  • Talking through treatment options with her
  • Making her wishes known to the hospital when she collapsed again and they wanted to carry out a number of invasive tests (she’d made it clear no more tests)
  • Explaining to the ward staff that their mum didn’t know what a rabid response team was and therefore didn’t know if she’d been assessed by them
  • Feeding her as the cancer left her weak and unable to lift her arms
  • Going to get ward staff when the call bell went unanswered after 2/3 ring (they were completely over stretched)
  • Moving her up the bed 2/# times an hour as she slid down unable to prop herself up
  • Going home to get her washing things, books and favourite possessions
  • Bringing a phone charger
  • Notifying other relatives and friends of what had happened and keeping them updated
  • Standing firm when the hospital wanted to discharge her to a residential home to receive palliative care as she had said she didn’t want that
  • Liaising with ward staff over a place in a hospice
  • Helping her plan her funeral
  • Buying a tangle teaser as her hair became increasingly knotted with laying in bed all day
  • Just being there – every day even if only fo a few hours she knew she wasn’t alone and people cared

After reading all that, tell me, who will be there to do that for people ageing without children? All those things her children did for her, who will do them? It’s very difficult to think about people going through experiences like my mother in law with no one by their side but with already 1 million people over 65 who have never been parents and many others with family too far away or unable to help for other reasons, there are people going through it and there will be more as the demographic shift plays out.

We cannot have a 2 tier system where people with children to fight for them have a better experience than people who do not.  We all know social care is under huge pressure, that the third sector is struggling to fund services, that advocacy is woefully under resourced, that the Government’s answer to the challenge of caring for older people when they need it is “family must do more”. We have to find a way, all of us working in the age sector to answer the question of “who will do the things children do when there are no children?”