Despite 55 million people worldwide living with dementia, a new study reveals that most people still lack a clear understanding of the condition.

Dementia is now the seventh leading cause of death globally and the leading cause of death in the United Kingdom. Currently, over 55 million people worldwide are living with dementia, a number expected to rise to 78 million by 2030. On average, someone develops the condition every three seconds.

Despite its prevalence, many people living with dementia still face significant stigma and discrimination due to widespread misconceptions and a lack of understanding about what dementia actually is.

World Alzheimer Report 2024

Today, Alzheimer’s Disease International published the 2024 World Alzheimer Report: Global Changes in Attitudes to Dementia. This report presents findings from our recent survey of over 40,000 people, including those living with dementia, caregivers, healthcare practitioners and members of the general public across 166 countries and territories. The results were both enlightening and concerning.

The report reveals that 65% of healthcare practitioners and 80% of the general public mistakenly consider dementia to be a normal part of ageing. Even more troubling, between 29% (in high-income countries) and 32% (in low and middle-income countries) believe that people living with dementia are dangerous more often than not. Furthermore, 64% of respondents viewed people with dementia as impulsive and unpredictable.

Due to the fear of stigma, 29% of those
living with the condition avoid or
discontinue close personal relationships.

Stigma impacts dementia patients and caregivers

These misconceptions have real-world consequences. A concerning 88% of people living with dementia report experiencing discrimination. Due to the fear of stigma, 29% of those living with the condition avoid or discontinue close personal relationships, and 31% steer clear of social situations because they worry about others’ reactions.

Caregivers are also significantly impacted. Around 43% have stopped inviting friends over out of concern for how they might treat their loved one, and almost half have declined invitations to visit friends or family.

Make an impact on World Alzheimer’s Month

Each September, Alzheimer’s Disease International organises the global awareness campaign, World Alzheimer’s Month. The theme for 2024 is #TimeToActOnDementia and #TimeToActOnAlzheimers, focused on addressing the stigma and misunderstanding that is clearly so prevalent.

Throughout the month, we encourage everyone to take action to improve dementia awareness worldwide — whether on social media, through memory walks or simply in daily conversations. Together, we can make a difference.

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Socks fitted with AI technology can help carers recognise early signs of distress in people living with dementia so that appropriate calming interventions can be made.

A family crisis prompted Dr Zeke Steer to create an innovative wearable technology that detects distress in people living with dementia.

AI socks to detect distress early

“My great-grandmother was diagnosed with dementia,” he says. “Her aggressive and agitated behaviour became very challenging and my family were eventually left with no option but to place her in a care home.”

This agitation and aggression were the result of pain, anxiety and confusion linked to the dementia. A particular challenge for caregivers is recognising signs of distress — especially in people with communication difficulties — before they manifest into something more serious.

Dr Steer’s research at the Bristol Robotics Laboratory led to the design of AI-enabled socks fitted with sensors that measure pulse, temperature, sweat and motion. Caregivers are alerted to the wearer’s distress, enabling timely care interventions.

In care home trials, people living
with dementia found SmartSocks
to be comfortable and familiar.

Sensors pick up stress signals from sweat glands

Socks might not be the most obvious wearable dementia technology, but there are reasons they work well. “In care home trials, people living with dementia found SmartSocks to be comfortable and familiar. In contrast, wrist-worn devices can be intrusive and add to distress, leading to their removal,” says Dr Steer. “There’s also a biological reason for favouring socks over a wristband. One of our sensors measures a sweat response called electrodermal activity. The soles of the feet have among the highest densities of sweat glands on the body.”

Dr Steer is founder and CEO of digital health company Milbotix. Milbotix is funded by Alzheimer’s Society through the Accelerator programme, with UK Dementia Research Institute among its collaborators. The socks are intended for use by families, domiciliary carers and care home staff and are now in care home trials.

“Following the painful experience with my great grandmother, I’d like to see SmartSocks helping people living with dementia thrive in whatever place they call home. The next version of the product will measure vital signs, track digital biomarkers of disease and help prevent falls,” says Dr Steer.

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Chronic pain is life-changing for people with arthritis and other musculoskeletal conditions. Teamwork and listening to people with lived experience is the path forward to beating chronic pain.

As the UK’s largest dedicated funder of arthritis research, Versus Arthritis is helping to bring together the expertise needed to push back on pain. 

Chronic pain’s societal impact

Chronic pain colours everything and prevents people from living a full life and, for some, from earning a living. It’s one of the main reasons people see their GP. It affects up to 28 million people (43%) in the UK alone. The impact of chronic pain on wider society is significant. 
 
It is the most difficult problem for many people with arthritis, which is why we took the lead in 2019, bringing together experts in pain, people with arthritis, healthcare professionals and researchers to create a research roadmap. This was a turning point in honing in on what scientific, clinical and patient-support advances needed to be made and led us to develop the Advanced Pain Discovery Platform (APDP) initiative. 

The impact of chronic pain
on wider society is significant.

Pain research initiative

The APDP is a five-year, £24 million initiative funded by Versus Arthritis in partnership with the UK Research and Innovation Strategic Priorities fund, with additional funding coming from Eli Lilly and the Medical Research Foundation. 

The APDP brings together pain scientists from across the UK to take on the challenge of chronic pain. The funded APDP projects in the UK include lab-based science, biopsychosocial research and data platforms, all involving people with lived experience of pain. Being guided by those who know what it means to live in pain is central to making progress.

Since 2010, we have also funded and supported the Pain Centre Versus Arthritis at the University of Nottingham, which places great emphasis on ensuring patients’ insights are fully embedded in its chronic pain research.   

Seeking voices for research

Given the critical role of real-life experiences, we are seeking more people to help us shape future research. It’s through collective action that advances will be made to transform the lives of people living in the shadow of chronic pain. 

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Dementia is the greatest challenge currently faced by our health and social care system. It is the UK’s biggest killer, costing our economy £42 billion this year (Alzheimer’s Society, 2024).

Dementia affects every part of the system, from primary care to hospital and hospice care. People living with dementia are also the largest users of social care. 

Addressing dementia challenges to help NHS

Secretary of State for Health and Social Care Wes Streeting says the NHS is ‘broken.’ By understanding the challenges posed by dementia, Ministers can understand the challenges faced by the entire system — and how to address them. 

Without action, the cost of dementia will be £90 billion annually by 2040. We must think and act differently on a condition that has been under-prioritised for decades. 

Diagnosis for dementia cost-efficiency

The cornerstone of any plan to address dementia must start with diagnosis. As Lord Darzi said when launching his new investigation into the NHS: “As every clinician and patient knows, the first step to addressing any health problem is a proper diagnosis.” 

As the disease progresses, total costs increase significantly, from £29,000 per year for mild dementia to £81,000 for severe dementia. Getting a diagnosis eases system pressure and cost. Existing treatments to manage symptoms are effective at reducing stressful and costly crisis points. Yet, only 1.4% of total dementia healthcare costs are spent on diagnosis and treatments. That doesn’t make sense for a system so clearly stretched. 

Just 1% of people living with dementia told
us they saw no benefit in getting a diagnosis.

Diagnosis essential for care access

Just 1% of people living with dementia told us they saw no benefit in getting a diagnosis. Yet, over a third of people living with dementia in England and Northern Ireland never get a diagnosis. In Wales, around half do not.  

Only a diagnosis can unlock access to care, support and treatments. People are less likely to escalate into a crisis, such as an unplanned hospital or A&E admission or a last-minute search for a care home place. Without an early and accurate diagnosis, people with Alzheimer’s disease will never be able to access treatments we hope will be part of a more hopeful future. 

Prioritise dementia for budget impact

More ambitious diagnosis targets and greater investment in diagnostics, including getting ready for new treatments and blood tests for dementia are key to reducing the devastating personal impact of dementia and the immense cost and pressures it brings to the NHS and social care system. The Government would do well to prioritise dementia as it prepares for the budget in October. 

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New minimally invasive procedures can repair tricuspid valve regurgitation, a potentially serious heart condition — and avoid the need for open-heart surgery.

There’s a good reason why the tricuspid heart valve is known as ‘the forgotten valve’, notes Dr Robert Smith, consultant interventional cardiologist based at Royal Brompton and Harefield hospitals, part of Guy’s and St Thomas’ NHS Foundation Trust. “Traditionally, if the valve leaks or fails, little can be done to treat it,” he says.

Tricuspid valve regurgitation consequences

Despite being historically overlooked, the tricuspid valve is crucial to heart health. A leak of the valve — known as tricuspid valve regurgitation — is common. It’s thought to affect up to 5% of the population in the UK aged over 75 and may be due to various factors including age and atrial fibrillation (AF). “However, severe cases are associated with significant mortality,” warns Dr Smith.

At an early stage, symptoms can be mild; but, as the condition worsens, patients may experience breathlessness, fatigue and swelling of the ankles and legs and, rarely, the abdomen. While diuretic medication may alleviate some symptoms, only reparative surgery can properly restore valve function. As this involves open heart surgery, it’s usually only performed while the patient is having an operation for another heart condition.

Two types of low-risk non-surgical intervention

A minimally invasive non-surgical treatment is now being used at a small number of hospitals globally, including Royal Brompton and Harefield hospitals. This could be a game-changer for patients with tricuspid valve regurgitation, particularly those who are too high-risk for open-heart tricuspid valve repair because they are older, have additional health issues or have advanced heart failure.

The procedure is performed with a catheter — a tube-like device, which delivers direct treatment to the heart via a small incision in the groin. “There are two treatments available to patients,” explains Dr Smith.

“The first is transcatheter edge-to-edge repair (TEER) where a clip is used to reduce the leak. The second is transcatheter tricuspid valve replacement (TTVR), a newer procedure where the valve is replaced and the leak is obliterated.” Both procedures are low-risk and take around two hours.

Tricuspid valve regurgitation procedure recovery

After a few days of monitoring, the patient is usually able to go home. Currently, the procedures are not available on the NHS, but Dr Smith hopes this will change. “One of our patients — who was elderly, frail and possibly facing a palliative care pathway — had the TEER procedure and, a month later, went salmon fishing,” he says. “There’s no doubt it can make a real difference to people’s lives.”

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Women and minorities often receive suboptimal cardiology care, facing delays and reduced access to life-saving procedures. Addressing these disparities through prevention, education and policy is crucial.

Cardiology combines fast-moving technology, successful medical procedures and innovative drug and device treatments — all of which we offer to patients to improve their quality of life and avoid early and unexpected death. However, not all of these treatments are offered equally to all patients.

Women badly served in cardiology

For example, women having a heart attack are up to 50% more likely than men to receive the wrong initial diagnosis and are more likely to have palpitation symptoms of heart rhythm disturbance passed on as panic attacks leading to delay in treatment.

There are also significant differences in access to heart valve replacement surgery, without which people are at risk of uncontrolled symptoms and worsening outcomes. Recent UK research has shown that women, ethnic minority populations and those living in deprived areas are much less likely to receive life-saving surgery to replace a failing heart valve (women 30% less, Black people 26% less, people of South Asian descent 22% less and people from deprived areas 24% less likely).

Women having a heart attack are up
to 50% more likely than men to
receive the wrong initial diagnosis.

Inequity among ethnic minorities and deprived populations

It is the people most in need of diagnosis and treatment who are missing out; people from ethnic minorities and deprived populations are already more likely to have major risk factors for heart disease such as hypertension, diabetes and obesity. This has been seen as a wider public health issue, with cardiologists becoming involved once the person has been identified as a patient, but it is clear going forward that primary prevention is key.

Timely, effective management of risk factors would reduce the incidence of heart disease, addressing all aspects of inequality. It will be difficult; cardiology has huge waiting lists and major workforce shortages — but having determined the extent of the problem, we owe it to our patients to address it urgently on all fronts.

Prioritising equal heart care

As doctors, we have the responsibility to do our best for the patients under our care. However, we also need wider societal measures — public education to encourage healthy lifestyles, legislation to ban advertising of unhealthy foods and, most importantly, a cross-government strategy to tackle all the factors that make people ill in the first place. As the newly elected BCS president, I will be making equality in access to heart treatment a priority.

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Professor Amitava Banerjee

National Specialty Lead for Cardiovascular Disease, National Institute for Health and Care Research (NIHR)

Cardiovascular disease is a leading cause of death in women. Better treatments are needed, so it’s vital that female patients with the condition participate in research studies.

It’s time to shatter the myth that only men are affected by cardiovascular disease (CVD), such as high blood pressure and stroke. In reality, it’s a leading cause of death in women in the UK and worldwide.

Cardiovascular disease risk in women

Women face additional CVD risk factors, including those related to pregnancy (such as preeclampsia, eclampsia and gestational diabetes) and menopause. Moreover, a high proportion of women with long-term health conditions, such as cancer, develop cardiovascular disease; while research shows that exposure to poor maternal health ‘in utero’ may increase the risk of a woman’s children developing CVD in later life. So, it’s vital that all women — and their clinicians — understand that CVD doesn’t discriminate and are aware of its symptoms.

“Take coronary artery disease, which kills one in 14 women in the UK,” says Professor Vijay Kunadian, National Specialty Lead for Cardiovascular Disease, National Institute for Health and Care Research (NIHR). “Yet, because it’s perceived as ‘a male disease,’ a clinician may not initially think that a woman with symptoms will have a heart issue.”

Consequences of lack of awareness

As an example, Prof Kunadian highlights the case of a 35-year-old female — a heavy smoker — who went to her doctor complaining of chest discomfort. After examination, the patient was prescribed antibiotics and sent home. However, she still felt unwell two days later, so she returned to her doctor and was prescribed indigestion medication.

It was only when she was taken to hospital in an ambulance six days later that the patient had an ECG; the results of which were suggestive of a major heart attack. This lack of awareness could have been fatal. “She is lucky to have survived,” says Prof Kunadian. “This (state of affairs) can’t be ignored anymore because most cardiovascular disease, and particularly coronary artery disease, is highly preventable.”

All the treatment and preventions
that we access or provide come
from clinical research.

Making it easier for women to access trials and research

One reason why women with CVD have been under-diagnosed and under-treated is because they have been under-represented in clinical research. In 2021, the Lancet Women and Cardiovascular Disease Commission published a series of new recommendations to reduce the global burden of CVD in women by 2030. These included appropriate representation of women in clinical trials and prioritising sex-specific research.

There are various factors behind low female research participation, notes Prof Kunadian, who works on the Commission. “For example, women may feel they don’t have time because of their caring responsibilities. It’s also about gaining trust. When I explain a study to a woman, it can take a lot longer because she typically has a lot of questions.”

Why research is vital for patient care and treatment

Professor Amitava Banerjee, National Specialty Lead for Cardiovascular Disease, NIHR, agrees that it must be made easier for male and female patients to seamlessly enter clinical trials and research.

“This can be challenging because they may view research as an extra hurdle to cross when they simply want quick treatment,” he says. “Yet, without that research, quick treatment would not be possible. When we explain this — and that it will potentially give them exposure to better treatment and increase our knowledge to benefit all patients — they tend to say ‘yes’.”

How to take part in clinical research

It’s important to get involved because research saves lives, says Prof Kunadian. “All the treatment and preventions that we access or provide come from clinical research,” agrees Prof Banerjee. “Without it, we can’t advance.”

Anyone interested in taking part in clinical research — including patients with a health condition, such as CVD, or those with no health condition — can find studies and register their interest via NIHR’s Be Part of Research website. The website helps people across the UK make informed decisions about taking part in research; explaining what research is and how you can get involved.

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Cardiovascular disease (CVD) claims over 20 million lives annually, often prematurely. Countries can reduce this toll by developing and implementing effective action plans.

Some cardiovascular conditions are genetic while many result from lack of access to care from birth and lifestyle consequences. All organs take wear and tear, but we should not think of heart disease as being inevitable just because we age.

Advocating for cardiovascular health

Health policies, combined with health systems that prevent, diagnose and treat cardiovascular conditions, promote wellbeing. The World Heart Federation (WHF) champions health for everyone. Improving cardiovascular health entails tailoring policies and care that respond to national, regional and local needs. Targeted care involves gathering data on CVD prevalence and respective risk factors. Effective, sustainable care is possible if properly resourced and covers all citizens.

WHF, along with other organisations worldwide, advocates for political actions that have a real impact on citizens’ lives. Thousands of people are lending their voices, demanding that governments establish national action plans or review existing ones.

The hallmark of tailored health
action plans is addressing all
phases of care for every citizen.

Cardiovascular health action plan

A cardiovascular health action plan is a strategic public health approach, powerful in promoting cardiovascular health for all. The hallmark of tailored health action plans is addressing all phases of care for every citizen.

Prevention entails monitoring CVD risk factors such as high blood pressure, cholesterol and diabetes through timely screening and early primary care. Proper nutrition, physical activity and avoiding tobacco are among the measures to urge and encourage.

Secondary prevention seeks to reduce the risk of recurrent cardiovascular disease. Lifestyle modifications and sticking with a prescribed treatment plan are key. Rehabilitation and recovery roll out targeted therapies, counselling and medicinal treatment to improve quality of life after a cardiovascular event.

Expand equitable healthcare

A comprehensive plan combines preventive, secondary and rehabilitative therapies so that no one is left out of their basic right to healthcare. Prevention of disease and premature mortality is an investment and a moral imperative.

Communities across the globe are becoming more aware of cardiovascular health risks and opportunities. The call is growing louder to tackle the greatest killer, improve cardiovascular health and promote wellbeing. In our respective ways, we must all respond, adding our voices and votes to expand equitable healthcare coverage for all.

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The new health secretary has claimed the NHS is broken. Dementia care is the perfect place to start the job of fixing it.

When Wes Streeting arrived in Whitehall as the new Secretary of State for Health and Care, his first speech stated that “the NHS is broken.” For dementia care, we should ask whether our health and social care systems were ever truly working in the first place.

Dementia care remains inadequate

Despite incredible work by dedicated health and care professionals, including Dementia UK’s specialist dementia Admiral Nurses, people often miss out on vital care needed to manage dementia’s complex challenges.

The number of people living with dementia is set to exceed 1 million within the first year of this Government. With no cure and a lack of support in place, many will find themselves left to cope with the devastating effects of dementia alone. As our population ages, it will be the defining health and social care challenge of our time. 

The number of people living with
dementia is set to exceed 1 million
within the first year of this Government.

Where to start in fixing dementia care

Despite some positive progress and well-intentioned announcements over the years, the wholesale strategic approach to dementia care required has slipped between the cracks of government agendas for too long. With enough political will, Dementia UK believes this parliament can be the one that fixes dementia care.

Whether addressing barriers to vital care funding, recognising that dementia is a complex condition that needs specialist support or supporting the one in four people in hospital beds who are living with dementia, we’ve worked with people affected by dementia and our specialist nurses to identify where to start:

• Improve support at the point of diagnosis by increasing access to vital health reviews and specialist dementia nurses.
• Review NHS continuing healthcare funding to recognise the impact of dementia as a complex and long-term condition.
• Increase the number of dementia specialist Admiral Nurses in hospital settings to improve health outcomes and reduce hospital stays for people with dementia.
• Create a new pathway of age-appropriate support for people living with young-onset dementia, where symptoms occur before the age of 65.

Moving dementia up the agenda

Streeting’s speech concluded with: “It will take time; we never pretended that the NHS could be fixed overnight.” We agree, however, the one in two of us who will be affected by dementia in our lifetime cannot afford to wait to take the first steps. The Government has a unique chance to transform dementia care. If they want to fix a broken NHS, dementia care is the perfect place to start.

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Learn how promoting lifelong brain health could be a game-changer for dementia prevention.

There are various things we can do throughout life to protect our brain health — and it’s never too early or too late to start. The World Health Organization has suggested that up to 40% of dementia cases globally could be preventable, but many things need to change for that to be achieved. By taking steps to protect brain health now, we may reduce the risk of developing dementia in the future.

Dementia prevention in action

Alzheimer Scotland launched Brain Health Scotland in 2020 — the start of a movement to highlight the potential of dementia prevention. Its goal is to promote lifelong brain health and create a legacy of long-term dementia prevention strategies. By reaching out as early as possible to our schools and wider communities, we can actively engage with the public and target people known to be at risk of brain diseases.

There are many steps we can take to
safeguard our brain health and delay
or prevent certain types of dementia.

Positive steps to protect brain health

There are some pre-determined aspects, such as age and genetic characteristics, that may put us at increased risk. However, there are many steps we can take to safeguard our brain health and delay or prevent certain types of dementia. These include:

• Regular exercise
• Staying connected with other people
• Reducing risks such as alcohol and smoking
• Managing stress
• Keeping on top of existing medical conditions (eg. diabetes, high blood pressure)

Tool for tailored brain health tips

We developed an interactive online quiz called ‘My Brain Health Plan’. It walks users through a series of questions about their lifestyle and habits, generating evidence-based suggestions and personalised tips.

Empowering people to protect brain health

In 2023, we opened the UK’s first walk-in Brain Health Service and Clinic within our Brain Health and Dementia Resource Centre in Aberdeen. A multi-agency project between the Scottish Government, NHS Grampian and Alzheimer Scotland, this dedicated space enables people to recognise their risk of diseases that can lead to dementia. Making small changes now can pave the way for significant improvements in the future.

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