An important step forward for JDC

Welcome to the brand-new Journal of Dementia Care (JDC). These pages may look substantially the same as ever, but behind the scenes there has been an important change. Successfully launched by Hawker Publications almost thirty years ago, JDC has become the leading publication and events team for professionals working within the dementia sector. JDC has … Read more

How to provide outstanding dementia care and meet regulatory requirements

By Jackie Pool, QCS, Dementia Care Champion There are currently 850,000 people in the UK with dementia. However, the Alzheimer’s Society forecasts that by 2040, some 1.6 million could be living with the condition. While researchers are working around the clock to find a cure – or to at least delay the symptoms of dementia … Read more

News (ND21)

Alzheimer’s Society expresses concerns over care costs cap

While describing government proposals for funding social care as a “real platform for change”, Alzheimer’s Society has branded a proposed cap of £86,000 on the costs paid by individuals for their own social care as “worryingly high”. Sector leaders also expressed concern that the additional money for social care will be spread too thinly.

A new “health and social care levy” coming into effect from April next year will see a 1.25% hike in National Insurance. According to the government, it will result in an additional £1.8 billion annually for social care in England over the next three years and a cap of £86,000 on each person’s lifetime social care costs. Everyone with assets of less than £100,000 will have their social care costs subsidised from public funds.

Writing in this issue of JDC, National Care Forum CEO Vic Rayner says £5.4 billion over three years “falls well short” of what is needed, comparing poorly with the additional £7 billion annually for social care recommended by the Commons health committee. Mark Adams, CEO of Community Integrated Care, writes that the plan fails “to recognise the millions of family carers, disabled people and social care workers who have been left behind.”

Alzheimer’s Society called for social care to be treated on an equal footing with the NHS, which has been allocated an extra £21.7 billion up to 2025. “A cap would need to be considerably lower than the worryingly high £86,000 proposed by the government if it’s to make a difference for more than a handful of people with dementia,” said Fiona Carragher, director of research and influencing. See JDC Asks.

Labour promises to double spending on dementia research

Labour’s shadow health secretary has committed to double spending on dementia research if the party wins power at the next election. In his speech at Labour’s annual conference in Brighton, Jonathan Ashworth told delegates that the social and economic cost of dementia was unquantifiable.

“In recent years dementia research funding has fallen under the Tories. Instead, a Labour government will double funding in dementia research to play our part in finally finding a cure for this cruellest of diseases,” Ashworth said.

Such a funding commitment would involve raising government spending on dementia research from £80 million to £160 million. It came as the Commons’ All Party Parliamentary Group (APPG) on Dementia called on the government to fulfill its “Dementia Moonshot” manifesto promise to invest more than £1.6 billion on dementia research over the next decade.

In a series of inquiry hearings, the APPG heard about the damaging impact of Covid-19 on dementia research, Alzheimer’s Society reporting 85% of researchers as saying that the pandemic had resulted in fewer funding opportunities.

“The effects of the pandemic have only highlighted further the urgent need for the government to bring forward the promised Dementia Moonshot funding,” the APPG concludes.

Fears over global ‘tsunami’ of demand for dementia diagnoses

A “tsunami of demand” for dementia diagnoses is set to overwhelm health care systems around the globe unless governments respond rapidly with more investment, Alzheimer’s Disease International (ADI) has said.

In its annual World Alzheimer Report, released on World Alzheimer’s Day, ADI says that the availability of new diagnostic tests and dementia treatments will create a groundswell of demand for diagnoses even though health services are often ill-equipped for the task.

“The emergence of quicker, easier, cheaper, less invasive blood biomarker diagnostic tools will combine with emerging drug treatments and the global ageing population to create a tsunami of demand for diagnosis, putting extreme pressure on health care systems,” said report author Professor Serge Gauthier.

According to the report, 75% of dementia cases go undiagnosed across the world and stigma among clinicians is still a “major barrier” to diagnosis with 1 in 3 believing that nothing can be done.

“The misinformation in our health care systems, along with a lack of trained specialists and readily available diagnosis tools, have contributed to alarmingly low diagnosis rates,” said ADI CEO Paola Barbarino.

“We need health care systems across the globe to ensure that their national dementia plan includes specialist dementia training and adequate diagnostic equipment.”

World Alzheimer Report 2021: Journey through the diagnosis of dementia, www.alzint.org.

News in brief
 

Poor understanding of risks for dementia

Only a third of UK adults think they can reduce their risk of developing dementia and very few realise that physical factors like blood pressure and diabetes raise the risk. These are among the findings of Dementia Attitudes Monitor, whose “wave 2” report was published by Alzheimer’s Research UK (ARUK) . Despite the public’s fatalism about risk reduction, 68% disagreed with the statement that “dementia is an inevitable part of getting older,” up from 60% three years ago. At the same time, the public has become more fearful of dementia with 49% saying that it is the condition they fear most, up from 42% in 2018. But the majority (61%) believe that the diseases which cause dementia will eventually be cured. ARUK chief executive Hilary Evans said she was buoyed by the findings, though in areas like understanding of risk reduction “there is still work to do.”

Musical note for World Alzheimer’s Day

World Alzheimer’s Day in September began on a musical note with the launch of a research project called “Light up my life” to engage more care home residents with dementia in music as an activity. Under the initiative by charity Music for Dementia, MHA care staff and music therapists will receive training to use special Casio keyboards that light up. Musical activities and easy-to-follow piano lessons will be part of the package. “We’re confident that the participants of the project will truly benefit and enjoy playing their new light up keyboards,” said Music for Dementia campaign director Grace Meadows. Casio is providing 50 keyboards for the study, which will run for 12 weeks with the aim of improving music participation and enhancing quality of life. See Perspectives.

Symptom challenges in hospital settings

Difficulties with identifying and assessing dementia symptoms in hospital mean that opporunities to put people on a care pathway to a memory clinic and diagnosis are missed, Alzheimer’s Society claims. In its report, Hospitals and care homes: Increasing access to a dementia diagnosis, it says that clinicians find a “significant challenge” in distinguishing between dementia and delirium in hospital settings. “Prioritising the reason for admission and fears over complicating discharge processes may also influence the extent to which dementia is identified and assessed,” the report says. In those cases where symptoms are identified, “people are falling off the diagnostic pathway before it even starts,” it adds. See article by James White.

Catastrophic impact of Covid on dementia

Data from the Office for National Statistics (ONS) suggests Covid-19 resulted in a 65% increase in dementia and Alzheimer’s deaths at home. The ONS said that overall more than 70,000 extra deaths had taken place in people’s own homes in England and Wales. “While we cannot pinpoint the exact cause, we know that for people with dementia, the impact of isolation and lockdown alongside the suspension of essential health and social care services was catastrophic,” said Alzheimer’s Society head of policy Gavin Terry.

Care staff describe ‘fear and uncertainty’

“Fear and uncertainty” were the dominant feelings of care home staff in the early months of the pandemic, according to a report from Bradford University’s Centre for Applied Dementia Studies. Staff were reeling from inadequate and ever-changing guidelines during the first wave, at a time when around half of coronavirus-related deaths in England are thought to have taken place in care homes, it says. “Knowing that age and comorbidity were key risk factors for coronavirus, it should have been easy to predict that the care home population with dementia would be at extremely high risk. Yet, this was barely acknowledged by the government or the media for many weeks after the pandemic began.” The report includes testimony from 20 dementia care practitioners, finding that staff had to deal with unprecedented circumstances while coping with their own fear and grief. Looking for the light: Findings from the Coronavirus and Dementia in Care homes (CoDeC) study, www.bradford.ac.uk/dementia.

NCF takes over digital innovation hub

A hub to drive innovation and find digital solutions in social care has been taken over by the National Care Forum (NCF). The Care Innovation Hub, established in 2018 by sector leaders, brings together young academics and care entrepreneurs to create solutions to key challenges faced by the care sector. NCF CEO Vic Rayner said her organisation was already engaged in a “range of transformation agendas around data, housing, workforce and wellbeing.” She added: “This is a great opportunity for NCF. We are an organisation that has shown leadership in transformation across the care and support sector.”

Compulsory vaccination not ruled out

Despite warnings from the care sector, health secretary Sajid Javid has refused to put on hold the requirement that care home staff are fully vaccinated by 11 November. Javid told Radio 4’s Today programme: “If you work in a care home you are working with some of the most vulnerable people in our country and if you cannot be bothered to go and get vaccinated, then get out and go and get another job.” His comments were made amid care sector fears that the recruitment crisis will be worsened if staff are forced to leave because of the mandatory vaccines requirement. “I feel that Mr Javid should seriously reconsider those remarks,” said Independent Care Group chair Mike Padgham. “What we need to get social care through the current crisis is constructive dialogue and understanding, not confrontation and contempt.”

Pianist with dementia conducts at BBC

Paul Harvey, who has dementia, shot to fame a year ago when he improvised his Four Notes piano composition, which went viral on social media. Now, thanks to the campaign Music for Dementia, he has gone a step further and fulfilled his ambition of conducting a symphony orchestra. “We thought that Paul conducting the BBC Philharmonic and playing piano with the orchestra would be a fitting way to celebrate this one-year milestone in his journey and we’re really proud to be part of it,” said the campaign director Grace Meadows.

Trust adopts AI-based cognitive testing

A cognitive testing system based on artificial intelligence (AI) has been given a critical role in the dementia care pathway at Birmingham and Solihull NHS mental health trust. The trust, which serves 1.3 million patients throughout the West Midlands, will deploy Cognetivity Neuroscience’s Integrated Cognitive Assessment (ICA) system in secondary care diagnostic and primary care early detection services. It will supersede pen and paper cognitive tests and avoid any cultural bias, important in a highly diverse population.

Cannabis-based oral spray for agitation

A cannabis-based oral spray is being tested in Greater London nursing homes to see whether it is effective in alleviating agitation in people with dementia. It is hoped that the spray, called Sativex, will avoid the harmful side effects of existing medications. People aged 55-90 experiencing regular anxiety, agitation and aggression are being invited to participate in the programme, known as the STAND trial, run by King’s College London and funded by Alzheimer’s Research UK. STAND-trial@kcl.ac.uk Cognitive health monitoring technology Care provider Loveday, which operates a “specialist memory care” service, has deployed new Integrated Cognitive Assessment (ICA) technology for the first time. Cognetivity Neuroscience’s ICA can be used to monitor the cognitive health of people in care and help identify when particular care or clinical interventions might be needed. Cognetivity CEO Dr Sina Habibi said the company was branching out from traditional assessments in the hospital clinic into residential and home care environments. The ICA relies on artificial intelligence to detect the earliest signs of cognitive impairment and support the diagnosis of dementia. www.cognetivity.com

West Midlands exercise campaign

A West Midlands campaign to help people with dementia and other long-term conditions take exercise has been boosted now that a national association for gyms and leisure centres has signed up. The association UKActive joined the Include Me WM campaign, which aims to make the West Midlands an “exemplar region” for engaging people with long-term conditions in physical activity. “Sports and physical activity should be accessible to all,” said West Midlands mayor Andy Street. www.wmca.org.uk

All-party group calls for investment

A better paid workforce, more investment in technology and a sustainable system of funding are at the heart of new proposals from the All-Party Parliamentary Group on Adult Social Care. The group makes an economic case for investment in social care, arguing that it leads to “tangible benefits in the spending power of local communities” and appealing for “better pay, better conditions and better recognition for the social care workforce.” A Vision of Social Care: The Economic & Wider Value of Adult Social Care, www.adultsocialcareappg.com.

JDC Asks (ND21)

“Will the PM Boris Johnson’s promise of more money for social care fix the crisis in dementia care?”  The prime minister’s commitment of a £36 billion increase in funding for health and social care over the next three years is clearly to be welcomed. But for people living with dementia and their carers, there may … Read more

Living with Dementia in Extra Care Housing

    It is estimated that more than fifth of those living in Extra Care Housing have dementia, but relatively little is known about their experience of it. Teresa Atkinson and colleagues set out plans for an 19-month project exploring how Extra Care can help to live well with dementia. Extra Care Housing (ECH) is … Read more

Creating meaningful days for our clients at home

It is well known that tailored activities can generate meaning and purpose in the lives of people with dementia. Emma Sadler explains how the Good Care Group set out to “create meaningful days” for its home care clients. Our mission is to keep people living well in the comfort of their own homes and communities. … Read more

Perspectives (ND21)

Less talk, more music – why action is needed now In March 2020, the volume was turned down on live music and the world was eerily silent. Many of us, including those of us who are musicians and music therapists, were not expecting what happened next. From singing from balconies to performances outside care home … Read more

An online education course for younger people with dementia

Research has shown that people with young onset dementia need advice, support and information to stay independent. Jacqueline Hussey and Gill Stokes report on how a pilot online education course did exactly that. Young onset dementia affects adults under the age of 65 and nationally there are approximately 43,000 affected individuals within this age group … Read more

Diagnoses: a new pathway

Nobody could have predicted the scale and force of Covid-19 but falling diagnosis rates have once again highlighted the need for a more streamlined service. James White argues that people with dementia should be prioritised for pandemic recovery. Every three minutes someone develops dementia in the UK. And yet, many are struggling to access a … Read more

Plan with care for the best possible quality of later life

Later life is too often overshadowed by needless suffering, says Chris Gage. In response, he has co-founded Plan with Care, which offers a highly personalised, fully managed holistic care and wellbeing service. Our belief is that vulnerable older people can thrive rather than languish in later life, whatever the circumstances. I am one of the … Read more