Visiting Research Fellow at the NIHR Health and Social Care Workforce Research Unit, Dr Joan Rapaport, reports from the 11th Annual Joint Conference from Age UK London and NIHR HSCWRU and Making Research Count (MRC) at King’s College London. It was held on 7 March 2019 at the Guy’s campus of King’s. On Twitter: #olderpeople11 (3,328 words)
Welcome
Joint chairs Professor Jill Manthorpe, Director of HSCWRU, and Paul Goulden, CEO of Age UK London welcomed nearly 100 people to the 11th Annual Joint Conference. The packed room included social workers, health care workers, researchers, and a diverse cross-section of ageing activists, users of services and their family carers, drawn from London’s older population.
Paul was pleased to report that since the last conference that London had signed up to the World Health Organization’s ‘Global Network of Age-friendly Cities and Communities’. Network members are committed to promoting healthy and active ageing and a good quality of life for older people. Many of the presentations and debates during the day addressed aspects of this theme.
Should I go or should I stay? Deciding an ‘optimal’ time for people with dementia to move to a care home
Kritika Samsi, Research Fellow, HSCWRU, King’s College London.
Emerging findings from this HSCWRU study, funded by the National Institute for Health Research, reveal the decision to enter a home to be a most difficult and emotional time for older people and their close family carers. It found that social workers were concerned with risk of harm, they worried about carers’ ability to continue providing care, and were very focused on trying to meet the wishes of the person with dementia. They were constantly weighing up the situation, trying to act in the best interests of the individual, but sometimes being obliged to resolve imperfect and competing priorities.
The study found no consensus regarding the best or optimal time for moving to a care home. Early moves could lead to the person losing their everyday living skills but in other cases people thrived in company and with better care. Relatives felt the decision was an enormous responsibility, especially where the person could not be fully involved because they were not able to make the decision.
Care home managers considered that if a person in the early stages of dementia made the move to a care home, staff would have a better chance of getting to knowing them and meet their individual needs and preferences. However, they appreciated that this conflicted with the wishes of those who wanted to stay in their own homes for as long as possible. Respite or short break care was viewed as a taster, the individual becoming familiar with the home on a gradual basis before the final decision. Some people liked to be on a waiting list for backup security and to keep options open.
Family carers would have liked more information in the build up to a care home move. The actual move from one’s own home to a care home could take time and afterwards some people took a long time to settle. Family carers often found the financial aspects of paying for a care home place baffling, and social workers and indeed care home managers spent considerable time explaining them on an individual basis.
Discussion points from the floor:
- There are very few places or care homes for younger active people who have early onset dementia.
- The Care Quality Commission has judged one in three care homes as requiring improvement.
- Care homes can be unstimulating – they do not feed the mind.
- Problems of encouraging people from black and ethnic minority groups to come forward to participate in research: the residents interviewed were all white British.
- When does one sell the family home? What happens when there is a sudden move with a crisis?
- Advance care planning would help with the decision-making.
- Progress of the illness could advance suddenly while the person was looking at the options and this results in limiting the care home options.
- Self-funders may make the decision earlier and more actively than their public sector funded counterparts.
Kritika said that the final study report would be out shortly.
Mental health in later life – who is giving up?
Trish Hafford-Letchfield, Professor in Social Care, Middlesex University.
In her introduction Trish said that depression in later life should not be regarded as normal. However, 60% of people living in care homes have dementia. There is very little mention of the concerns of older people and they have fewer health resources allocated to their services even though they are a growing group. Older people do not have the same access as younger people to psychological talking therapies, although when these are offered people do very well. Older people are an invisible population in many mental health services and debates.
Trish talked about the risk of suicide among older people and said that this subject is under-researched. Suicides in care homes may not be recorded as such. Whilst the official rate is low among care home residents, Trish argued that this may not be the true figure. Perhaps there are few studies about care home suicides because it is a taboo subject. There are few opportunities to end one’s own life in care homes on account of the monitoring and supervision in the home. The few studies that exist have not involved older people and carers in the debate about preventive interventions that might help and the questions asked in many studies are not appropriate for care home residents. The impact and cost of current interventions to prevent suicide is also unknown.
Trish outlined her exploratory study on ‘giving up’ in care homes, coproduced with stakeholders and involving three peer (older people) researchers. The key question posed was: what does giving up look like? A vignette (fictional story) was offered to people to prompt discussion but this was not needed as people had their own stories and talked easily. Phrases such as ‘my time to go’, ‘turning to the wall’, ‘stopped eating’ and people ‘demanding to take control of their medication’ emerged. Staff did their best to divert the resident, such as by ‘jollying’ them along. They felt that they needed to be seen to be providing care but that this sometimes conflicted with the person’s wishes, that didn’t fit with care home routines. For some older people the decision to ‘give up’ was a reflective one. For others, it might include financial reasons, such as wanting to leave some money for their family, rather than it being ‘wasted’ on the care home fees.
Frontline care workers felt that they knew individual residents well but if the family had concerns then the family would generally talk to the care home manager rather than the key worker. Staff were expected to cope with people dying but many felt this was always difficult. No psychological support was offered. Some staff were conflicted about calling in religious leaders at this time whilst others felt this ritual was more helpful.
Trish said the topic of ‘giving up in care homes’ required a new conceptual framework regarding what giving up looks like and ways of responding to it. The conversation needs to start about how people see their lives ending. Staff may need training to recognize what they bring to this area of practice, to understand and predict risk, and to plan how best to respond to it. Standardized ways of how giving up is recorded should also be set. Older people, carers and community-based professionals should be engaged in any such research and developments.
The title of the above research project is: ‘He just gave up’.
Discussion:
- We are obsessed with longevity rather than allowing people to give up when they want to do so.
- We know depression is treatable. This should be taken into account when signs of giving up appear.
- The Mental Capacity Act and its provision for making Advance Decisions: local authorities may worry about taking decisions in this area.
- People need good care home choices.
- Access to Switzerland: an example of a person with capacity in a care home being prevented from taking this course was offered. The person reported that they had asked for an independent advocate but was refused. Is advocacy available to self-funders and who pays? Paul Goulden agreed to pursue this.
- The Lasting Power of Attorney (LPA) forms are too complicated for some people – but going to Citizen Advice was helpful.
Human Rights and what they mean to people working, living in and visiting care homes
Caroline Green, PhD student, HSCWRU & Institute of Gerontology, King’s College London
The message underpinning Caroline’s presentation was that for Human Rights to be effective, people need to have the right information and be able to understand it and the principles must be lived. She explained that Human Rights, our rights and freedoms, is both a moral and legal concept. Under the Human Rights Act 1998 all UK laws must be compliant with the Articles of the European Convention on Human Rights. These include rights to life, freedom from inhumane treatment, rights to liberty, respect etc. The duty bearers are principally the government and public authorities, businesses and business managers, and us all.
Caroline explained that she had read 100 Care Quality Commission (CQC) Inspection Reports of care homes of as part of her research. Overall, one in three care homes have recently been found to require improvement in their quality of care and service standards, with Human Rights implications. Under Section 73 of the Care Act, care homes are directly liable to meet human rights obligations in respect of publicly funded (eg paid for by the local council) residents. Self-funders are excluded from this provision. However, the CQC adopts a Human Rights approach on inspection visits and its investigative questions are framed accordingly. Questions about whether people are abiding by the Mental Capacity Act 2005 and Health and Safety requirements are incorporated in the CQC inspection schedule.
Caroline commented that whilst she found broad consensus that Human Rights apply to us all, these mean different things to different people. This position was very clear in the care home context where residents’ contrasting views about rights, such as privacy, enablement, fair treatment and duty of care were considered as infringed or improved because of the residential setting. Some critical voices thought the Human Rights Act to be unnecessary, as they would have recourse to other laws if they were mistreated or had a health and safety grievance. Comments from care home managers included concerns that mention of human rights to residents might make them realize what they have lost. Another suggested that human rights could be exploited for the wrong reasons.
Discussion:
- As Human Rights mean so many different things to different people it is worth asking individual residents for their opinion on Human Rights – what it means to them?
- Self-funders and where Human Rights are challenged: is advocacy available to self-funding residents? One member repeated difficulties in finding an advocate for a friend who wished to die with dignity.
- Views were expressed that the proportion of self-funders would likely increase. The advocacy issue would therefore assume greater importance.
- Human Rights and recognition of loss are emotional topics. Care home managers have experience of people facing multiple losses.
- Where the Human Rights of one person potentially infringe those of another, a balance has to be struck.
- There has been talk of revoking the Human Rights Act in Parliament. Even if this transpires, the UK will still be required to promote human rights under international human rights law.
Supporting older people experiencing gambling-related harm: insights from practitioners
Stephanie Bramley, Research Associate, HSCWRU, King’s College London.
Stephanie explained that gambling posed issues of mental health, risk and balancing rights and responsibilities. The Gambling Act 2005 covers items such as betting, gaming, lotteries, online and mobile gambling and advertising in a range of locations. There has been a huge increase in gambling and the industry is a lucrative source of tax revenue for the government. As a result of recent government consultations, the maximum stake at fixed terminals has been reduced from £100 to £2.
Of the people who gamble, just about half, 48.6%, are aged 55 and over. Gambling can have an adverse impact on their health and also that of their families and even lead to crime. The Gambling Act aims to protect vulnerable groups. Although not defined in the Act, older people are one such group. Older people are at risk of financial abuse, online scams and of being robbed, like other people but they may be more vulnerable. The Care Act places a duty on local authorities to promote wellbeing and to safeguard vulnerable people. Stephanie posed the questions: might some older people need an assessment under the Mental Capacity Act to ascertain whether or not they are fully aware of what they are doing? How would this fit with their right to freedom? Do older people want to ask for help if they have a gambling problem? Stephanie said that older people are underrepresented in the callers to the gamblers’ telephone helpline that is set up to provide help.
Stephanie reported that we don’t know much about the topic of older people gambling. The Unit’s research has found that GPs, nurses and workers from voluntary organizations have generally not received any training to enable them to help older people with gambling habits. Practitioners wanted training about what to do, how to spot early signs of addictive behaviour and prevent the problem from escalating further, and where to signpost people for more expert help. They also wanted better public awareness.
Stephanie said that, in her experience, people gambled to fulfil a social need and to combat loneliness. Supportive interventions often revealed a range of problems that need to be addressed. Older people can refer their family and friends to helping services as there are not generally long waiting lists.
Discussion:
- Newer forms of online gambling are especially problematic for computer-literate older people, especially if they are in poor health and housebound, as they may turn to it as a form of social activity.
- People sometimes do not realize what they are doing or the risk to others. Harmful behaviour has to be considered in the context of rights.
- There is potential for financial abuse. An attendee provided an example of a person using his older relative’s bank card to fund his gambling habit.
- People may make unwise decisions but still have mental capacity. In such situations they can be helped with money management. Action might be considered, such as giving the person a limited amount of money to gamble with or suggesting they put limits on their access to money. Some people may need mental capacity and best interest assessments.
- Businesses provide incentives to gamble – offering free first bets – and illegal and private gambling also occurs but may not be picked up by research.
- The World Health Organisation (WHO) has categorized some gaming /gambling as a disease or addiction.
- Care home residents are sometimes encouraged to play games like bingo, and gambling may give a needed thrill if the care home environment is dull.
- The current government consultations on gambling are geared towards younger people.
- Gambling and the associated risks of harm are not included in social work training.
- Some older people resent interference from their younger family: saying ‘It’s my bloody money’.
Contributing to excellent care for older people: the Older People’s Fellowship
Dr Joanne Fitzpatrick, Reader in Older People’s Healthcare & Dr Ivanka Ezhova, Research Associate, Department of Adult Nursing, King’s College London
Joanne explained that the principal objectives of the Older People’s Fellowship (OPF) programme were to set up and keep going new developments in nursing care, to promote quality care and to enable the voices of older people to be heard. Whilst much of nursing care is excellent, services for people with complex needs need to improve. There are many hurdles to conquer, such as lack of money and ensuring nurses have the right values, skills and knowledge base. Their university programme is passionate about promoting person and relational-centred care, leadership and innovation in service for older people. It helps nurses to reach their full potential, to start, lead and sustain networks of like minded professionals.
Allied health (like Occupational Therapists) and nurses are recruited to the Fellowship to work in new roles in older people’s services. Successful fellows and their respective projects include:
Mental health: an advanced nurse practitioner has set up a quality improvement project to reduce drug prescribing for people with dementia. The initiative has achieved a 25% reduction. Funding has been granted to allow this nurse to lead a specialist team to keep this going.
Dementia: The chair of the Dementia Action Task Force has led an initiative to improve dementia care in hospitals. As a result patients are getting specialized support and steps are taken to ensure that they are eating and drinking enough. The fellow is now teaching other nurses.
Older adults: a nurse has started a quality improvement project to help family carers. As a result new carer coordinator roles have been introduced to the hospital and a new carer ‘pathway’, or agreed way of doing things, has been set up.
Frailty services: A physiotherapist has started a service to improve practitioner skills to identify frailty (the situation where we cannot ‘bounce back’ from a set back). A frailty scale has been introduced so that staff can know a patient is at risk of this.
Ivanka explained that those recruited to the OPF were encouraged to reflect on their initiatives, leadership roles and projects, and how these improved older people’s experiences. They undertake surveys and do interviews and focus group and give feedback on their work when their time with the fellowship is over. Outcomes include more confidence about their knowledge, skills and opportunities to support and be supported by the wider team. They also say that the OPF gives them credibility and standing. Ivanka presented the OPF as having a long-term commitment to innovation, critical assessment and promoting specialized experts in older people’s healthcare.
Discussion:
- Approximately 30 ‘fellows’ are selected for each cohort of the OPF.
- The OPF is open to healthcare professionals working in the NHS but also non-NHS services, such as care homes and voluntary organizations.
- The OPF was initially established to support nursing staff, but since 2017 has broadened to include ‘allied health professionals’. Social work is currently excluded.
- Older people are included in the bids for OPF projects and in two teaching modules where the focus is on quality improvement.
Speakers’ panel: questions and discussion.
Human Rights: people are not listening to what human rights involve. Caroline confirmed that if the UK leaves the EU we would continue to be under the European Convention on Human Rights. Even if the UK government scraps the Human Rights Act, international human rights law will still apply.
People in their own homes are, like their care home counterparts, still being given task focused care without the benefit of social networks. People need to be reconnected to and be helped to reciprocate with their communities in respect of everyday living.
LBGT people: issues of reconnecting people to their communities are huge as may be additionally vulnerable to isolation in older age.
Intergenerational projects to help young people to engage with older people should be encouraged.
Older people can learn new skills through research.
How coroners record deaths and the events leading up to death should be reviewed. Trish said one of her students is trying to develop a study to examine this topic.
The Chair thanked the speakers for their presentations and delegates for their questions and discussion. There were many points made in the presentations that Age UK will think about and debate more widely. He expressed particular thanks to Jess Harris for her administrative skills and the other HSCWRU staff supporting the conference who are so willing to share their research. He looked forward to seeing people at next year’s annual conference in 2020.
Joan Rapaport is Visiting Research Fellow at the NIHR Health & Social Care Workforce Research Unit, King’s College London.
See #olderpeople11 on Twitter for pictures of the event.