People over the age of 85 needing 24-hour care is set to double


The number of people aged 85 and over needing 24-hour care is set to double, says a new study, as an expert warns the care system is “at breaking point”.

The study, published in the Lancet Public Health journal, analysed the projected health needs of the elderly in England between 2015 and 2035.

It found that the number of 65-year-olds and over needing round-the-clock care is also set to rise by a third.

The government says adult social care reforms will be set out in the autumn.

The modelling study, carried out by Newcastle University and the London School of Economics and Political Science, highlighted the fact that the fastest growing demographic in the UK is elderly people over 85, whose numbers are projected to more than double by 2035, increasing by 1.5 million.

Many of these elderly will develop multiple long-term health conditions, such as dementia and diabetes, leading to increasingly complex care needs.

The number of over-85s requiring help throughout the day with tasks such as dressing, bathing and going to the toilet is estimated to almost double to 446,000 by 2035.

By the same time, the experts predict that a million over-65s will need similar 24-hour care.

Prof Carol Jagger, from the Newcastle University Institute for Ageing and senior author of the study, said the number of unpaid carers is in decline. She warned that relying on unpaid family carers was not sustainable and said: “The challenge is considerable.

“Our study suggests that older spouse carers are increasingly likely to be living with disabilities themselves. “On top of that, extending the retirement age of the UK population is likely to further reduce the informal carer pool, who have traditionally provided for older family members.”

Investment

Nick Forbes, senior vice-chair of the Local Government Association, warned that more investment was needed to avoid a crisis. “Adult social care services face a £3.5bn funding gap by 2025, just to maintain existing standards of care,” he said.

“The system is at breaking point, ramping up pressures on unpaid carers. “There is an urgent need to plug the immediate funding gap and find a long-term solution to how we pay for adult social care.”

The study also noted that there were increasing numbers of adults aged over 65 living independently, with a rise of 60% forecast by 2035.

However, as they got older men were more likely to remain independent, whereas women will spend almost half of their remaining life with low dependency needs and more years needing intensive 24-hour care.

The researchers categorised elderly people’s care needs as high dependency if they need round-the-clock care, medium dependency if they need help at regular times daily, or low-dependency if they require support less than daily and are generally looked after in the community.

Focus on disabling conditions

Prof Jagger said this highlighted the importance of focusing on disabling long-term conditions, such as arthritis, that were more common in women than men.

“The rise in obesity is hitting women harder than men, and men have probably benefitted more from the reductions in cardiovascular disease.

“Women also suffer from a decline in muscle mass, and so I am stressing the importance of physical activity and maintaining strength and balance.”

She added: “This expanding group will have more complex care needs that are unlikely to be met adequately without improved co-ordination between different specialties.”

The report also predicts that the number of people aged over 65 with dementia and at least two other diseases will double by 2025 and treble by 2035.

Summary

This study published in the Lancet Public Health journal highlights the challenge faced by governments regardless of their political persuasion in meeting the future care needs of people in England. The study found that the fastest growing demographic in the UK is elderly people over 85, whose numbers are projected to more than double by 2035, increasing by 1.5 million. Many of these people will develop multiple long-term health conditions such as dementia and diabetes, leading to increasingly complex care needs.

Despite government platitudes claiming additional funding has been made to the social care sector, those who work in the industry know that this level of investment is no more than a sticking plaster measure. What is needed is real investment now and, in the future, along with a strategy that addresses the complex care needs of people who are living longer. To rely on the valuable contribution made by carers is unsustainable.

Albert Cook BA, MA & Fellow Charted Quality Institute
Managing Director
Bettal Quality Consultancy

Social Care Institute of Excellence Report prejudice and social isolation experienced by LGBTQI+ Disabled People

Until now, not much has been documented about the experiences of using self-directed social care support by LGBTQI (Lesbian, Gay, Bisexual, Transgender, Queer, Questioning and Intersex) + Disabled People. However, a recent report by SCIE found that LGBTQI+ LGBTQI+ say they have experienced prejudice and social isolation. They also say they are worried that if they come out to PAs (Personal Assistants) / support workers or those that assess and review their support, then that support could be compromised.

A new report, along with two films and two at a glance briefings, highlight, for the first time, some of the issues faced by LGBTQI+ Disabled People in England. They say that too often they have to make ‘bad bargains’ with PAs / support workers whereby they have (out of necessity) carried on with PA relationships even when there was an element of self-censorship or discrimination.

Quote from the report

A man who was not out to his family with whom he lived at the time, said that he had built up enough rapport and confidence with one support worker to come out: “…So I thought I would tell him about my sexuality and he went straight downstairs and told my mum. She was crying. She said to me, ‘Is this true?’ So, I had to lie to my mum and say, ‘I’m not gay.’”

LGBTQI (+ Disabled People say there are many benefits to using Self Directed Support, such as having more choice and control over their care. But they say that this can be a challenge for a number of reasons. They fear coming out to PAs / support workers because their care might be jeopardised. They say that when care needs are being assessed and reviewed there is a lack of attention to sexual orientation and gender identity. They also say that they can experience social isolation; they have experienced prejudice; and they often feel isolated from the wider LGBTQI+ community.

The report and films have been produced by the University of Bristol, the Social Care Institute for Excellence, Regard and Stonewall.

The research

In a survey, in-depth interviews and a focus group of LGBTQI+ Disabled People who use self-directed social care support, researchers found:

  • More than half of those surveyed said that they never or only sometimes disclosed their sexual orientation or gender identity to the Personal Assistants who they paid to support             them
  • More than a third of those surveyed said that they had experienced discrimination or received poor treatment from their PAs because of their sexual orientation or gender    identity
  • More than 90% of those surveyed said that their needs as a LGBTQI+ disabled person were either not considered at all or were only given some consideration when their needs were assessed or reviewed.

Social isolation is a big issue. When asked about getting support to do LGBTQI+ ‘things’ (e.g. go to an event/bar, have help to have sex with self or others) 22% said that their PAs did not help them with any of these activities.

Benefits of Self Directed Support

Having control over support arrangements is the most commonly cited reason in the report for preferring Self Directed Support. Interviewees gave many positive examples of the benefits of Self Directed Support. Previous experiences with agency staff who changed has frequently often led people to opt for Self-Directed Support as they want to be in control of who comes into their homes.

‘Bad bargains’

The study demonstrates that the reality of choice and control for LGBTQI+ Disabled People using self-directed social care support varies greatly. In more instances than not, those in the study had reservations about being open with PAs and staff about their sexual orientation or gender identity; they had experienced direct and overt discrimination from some PAs or support workers; they had made ‘bad-bargains’ whereby they (out of necessity) carried on with PA relationships even when there was elements of self-censorship or negative attitudes.

Professor David Abbott, Professor of Social Policy at the School for Policy Studies, University of Bristol, says: Self-directed social care support continues to provide opportunities for LGBTQI+ Disabled People to exercise choice and control over the support that they get. When support from PAs really meets the needs of LGBTQI+ Disabled People, people in our study talked about the positive impact on identity, inclusion and belonging. But our collaborative research also highlights the barriers that people faced and the lack of routine attention being paid to their human and legal rights.

Summary

This report highlights the concern of LGBTQI+ Disabled People in England who receive self-directed social care support. Leading to a loss of confidence in their PA’s and support workers. In the light of the report managers must ensure that support staff are appropriately trained, and aware of their responsibilities with respect to; trust, confidentiality, equality, discrimination and duty of care.

Albert Cook Albert Cook BA, MA & Fellow Charted Quality Institute
Managing Director
Bettal Quality Consultancy