A “significant” breakthrough has been made in understanding why Alzheimer’s disease progresses so rapidly in some people, which can lead to decline and death in as little as three years.
Researchers have discovered a link between strains of misshapen and fast-replicating tau protein and accelerated cognitive decline, hailed as a critical result that illuminates the variations in Alzheimer’s disease and could help lead to more precise diagnoses and targeted therapies.
The international team, led by Case Western Reserve University, said such work could lead to changes in Alzheimer’s care, possibly giving patients and families more accurate prognoses.
“For the first time, we established the link between the behaviour of tau protein in the test tube and the clinical duration of the disease in patients,” said Jiri Safar, a professor in the departments of pathology, neurology, and neurosciences at the Case Western Reserve School of Medicine.
“What the research says in general is that Alzheimer’s is not a single disease. There is a spectrum, and different cases have distinct biological drivers of the progression—and they should be handled as separate diseases.
“We have to understand the disease and then sort it out into the different subsets or categories, and that’s effectively where we are now with Alzheimer’s disease.”
Professor Safar hopes the research will help dispel the public perception that people with Alzheimer’s disease will likely decline slowly over eight to ten years; between ten and 30 per cent of people have the rapidly progressing form of the disease.
“We’re talking about 600,000 to 1.8 million patients in the United States alone,” he said.
“So now we can think about it in the same way we clinically handle malignancies like breast cancer or pulmonary cancer—that different cancers have very different prognoses and therapeutic strategies.”
The next step is to translate the tools used in the study to clinical practice and identify people at high risk for rapid disease progression and then to tailor treatments to the diagnosis.
The Alzheimer’s disease research follows Prof Safar’s groundbreaking work involving prion proteins.
He and colleagues discovered that when prions become misfolded they can replicate and damage the brain. They used concepts and tools developed in the prion work to investigate the mechanisms of misfolded proteins and applied them to tau protein and Alzheimer’s disease.
The prion research helped create a new paradigm for understanding Alzheimer’s disease, Parkinson’s disease, Amyotrophic Lateral Sclerosis (ALS) and other neurodegenerative conditions.
They knew that genetic and environmental factors linked to the increased risk of developing Alzheimer’s disease explained about 30 per cent of cases. In the recent research, they sought to understand the other 70 per cent.
The scientists examined brain samples from 40 people who died of Alzheimer’s disease—roughly half had lost cognitive functions slowly over years and the rest declined quickly and died in less than three years.
The researchers found that in rapidly progressing cases, the cores of tau protein particles were shaped differently, meaning they had different structural organisations.
Moreover, using processes they previously developed, they found that these misfolded tau species—like prions—can replicate more rapidly in test tubes.
They also deepened their understanding of the impacts of different structures and characteristics of abnormal tau and determined the attributes that predicted the speed of replication.
Talk therapy ‘can improve quality of life in dementia’
Psychological interventions could help alleviate depression, rather than the use of medication, a new study finds
Talk therapy may alleviate depression and improve quality of life for people with dementia, a new study has shown.
Feelings of anxiety and depression are common in people living with dementia and mild cognitive impairment – who are twice as likely as their peers to experience such conditions – but the best way to treat these symptoms is currently unknown, as commonly-prescribed medicines may not be effective for people with dementia and may cause side effects.
The findings of the new and updated Cochrane Review paper are important because it is the first review showing that psychological interventions, or talking therapies, are effective and worthwhile in the context of ineffective drugs for depression in dementia.
The review also shows they may provide additional benefit in terms of improving patient quality of life and everyday function, also helping to alleviate loneliness.
The researchers are calling for clinical guidelines for dementia to be revised to recommend psychological therapies and specifically Cognitive Behavioural Therapy (CBT).
Lead author Dr Vasiliki Orgeta, associate professor at UCL Psychiatry, said: “We currently have no standard treatments for depression for people with dementia, as antidepressants do not work for them.
“Yet, despite the lack of supporting evidence, they are still prescribed for many people living with dementia, which is an important problem given that more and more evidence is accumulating suggesting that not only they do not improve symptoms, but they may increase risk of mortality.
“Previous evidence into the clinical effectiveness of psychological treatments has been limited. Reporting on the most up to date evidence, we found that these treatments, and specifically those focusing around supporting people with dementia to use strategies to reduce distress and improve wellbeing, are effective in reducing symptoms of depression.”
People with dementia are twice as likely as other people their age to be diagnosed with a major depressive disorder. Studies have estimated that 16 per cent of people with dementia experience depression, but this may be as high as 40 per cent, so there is a great need for effective treatments.
Depression and anxiety can also increase the severity of the neurological impairment itself, thus reducing independence and increasing the risk of entering long-term care.
Dr Orgeta added: “Our findings break the stigma that psychological treatments are not worthwhile for people living with cognitive impairment and dementia, and show that we need to invest in more research in this area and work towards increasing access to psychological services for people with dementia across the globe.
“We want people who experience cognitive impairment and dementia to have the same access to mental health treatments as everyone else.”
The paper, published by the Cochrane Library as part of their database of systematic reviews, incorporated evidence from 29 trials of psychological treatments for people with dementia or mild cognitive impairment, including close to 2,600 study participants in total.
The psychological interventions varied somewhat, including CBT and supportive and counselling interventions, but were generally aimed at supporting wellbeing, reducing distress, and improving coping.
The review shows that psychological treatments for people with dementia may improve not only depressive symptoms but several other outcomes, such as quality of life and the ability to carry out everyday activities.
Although more research is needed, the study found that these treatments may also improve depression remission.
The authors say the potential of improving many outcomes with one psychological intervention may be highly cost-effective and could be key to improving quality of life and wellbeing for people with dementia.
Co-author Dr Phuong Leung said: “There is now good enough quality evidence to support the use of psychological treatments for people with dementia, rather than prescribing medications, and without the risk of drug side effects.
“What we need now is more clinicians opting for talk therapies for their patients and commitment to funding further high-quality research in this area.”
Dr Orgeta added: “Pharmacological treatments in dementia have been prioritised in trials for many years, as a result they benefit from more investment, so it will be important to invest more in studying psychological treatments.
“There is a need for novel treatments, specifically developed alongside people with dementia, their families, and those contributing to their care.”
The review was conducted by researchers from UCL, University of Nottingham, Universidad de Jaén, and Salford Royal NHS Foundation Trust, and was supported by the National Institute for Health Research.
Dementia care enhanced through VR training
The new ELARA system offers insight into the world of someone with dementia and how best to support them
Healthcare professionals are being supported in enhancing delivery of dementia care through a new virtual reality (VR) approach.
Following its recent multi-million investment round, VR training platform MOONHUB has launched ELARA, expanding its established presence in tech into health and social care.
The training curriculum highlights how dementia can affect a person’s behaviour and guides caregivers on how to identify triggers or reasons for distress, as well as offering techniques for enhancing communication to support patient needs.
Post-training, participants are given an overview of their performances via a personal dashboard, enabling organisations to make informed, data-driven decisions on caregivers’ potential and better streamline solutions.
The launch of ELARA builds further on the growing role of VR in health and social care training, with it being increasingly adopted within care.
“Dementia affects everyone differently and can be a very distressing experience,” said Claire Surr, Professor of Dementia Studies and director of the Centre for Dementia Research, Leeds Beckett University, who co-curated ELARA’s new training programme.
“Staff must have an understanding of how people with dementia might see the world, and the impacts of what other people say and do, as well as the physical environment on the person’s wellbeing and behaviour.
“The VR training I have helped curate places staff in realistic care scenarios to help them develop the skills and knowledge to prevent or reduce distress.
“Research indicates experiential dementia training can help increase their empathy and understanding, potentially improving the quality of care staff deliver.
“We hope VR will offer an exciting avenue for providing experiential learning opportunities.”
The content of MOONHUB’s ELARA dementia training aligns with learning outcomes from the Dementia Training Standards Framework, is approved and accredited by CPD standards, and is recognised by Care England.
Martin Green, chief executive of Care England, said: “The launch of MOONHUB’s virtual reality training is a very creative way to deliver training for care professionals.
“This new system has the potential to revolutionise the training experience and offers an interactive and comprehensive approach to training and development.”
Dami Hastrup, founder and CEO of MOONHUB, added: “The pandemic has shone a spotlight on health and social care, highlighting its strength and resilience during the most troubling of times.
“We immediately recognised the importance of social care and the need for investment and development in the future. When we first started building the programme, we wanted to ensure we had the right resources and expertise to offer a state-of-the-art experience to those training in the healthcare sector.
“We believe dementia education and training for the health and social care professionals is vital and we’re incredibly excited to be the first to offer an immersive and accessible solution to up-skill learners with the appropriate person-centred care through the power of VR.”
Recognising the silent carers
Carer and award-winning writer Beth Britton shares her thoughts on reaching out to dementia carers who don’t realise they are carers
Back in 2013 at the G8 Dementia Summit, I made a two-minute film to talk about me, my dad and our years with dementia – a poster was created that quoted me saying: “You become a carer, but you don’t realise you’ve become a carer.”
For me that statement really sums up how dementia crept up on us as a family, and how, bit by bit, dad needed more and more help and support.
I’d like to think that dad’s story would be an unusual one now – going ten years without a diagnosis in these days of increased awareness is, I hope, not the norm – but my recent personal and professional experiences suggest that there are still significant delays in people seeking help, with partners and other family members becoming carers in all but name in the meantime.
Carer identification has been a hot topic in the many years I’ve worked as a campaigner, consultant, writer and blogger. I’ve sat in meetings with everyone from government officials to academics discussing how we might identify carers better, coming to my own conclusion that just like me – when I viewed myself as a daughter looking after her dad – so most ‘silent carers’ only see their relationship to their loved one, not how every month they are taking on a little bit more to maintain what might be called the status quo.
Dementia carers are particularly adept at this since most people who are living with dementia develop symptoms gradually, unlike caring for someone who has a sudden acute health episode in their life like a heart attack or stroke.
How we reach out to silent dementia carers is a key concern of mine, not because I believe we need to boost dementia diagnosis rates with false targets, but out of a human concern for people who in all likelihood would benefit from some low-level advice in the earlier stages of their loved one’s dementia but are a long way from accessing it.
If you’re reading this blog, you probably aren’t in that bracket. Silent carers generally don’t frequent social media or search online for information. I didn’t. Why would you?
As I said earlier, you only see the relationship you have with your loved one rather than how that relationship is subtly changing. It often takes someone from the ‘outside’ to notice, as I’ve done on many occasions with people I’ve known well or only just met.
While all the standard advice about encouraging people to see their GP is important, I feel passionately that information about changes you can make today – regardless of a diagnosis – is just as important. Making modifications to the environment to help your loved one navigate around their home, or putting up a simple list of instructions for how they can make a cup of tea, helps right now.
With few treatments and no current cure for any type of dementia, alongside the residual stigma that I believe means people are more comfortable going to their GP with a query about potential cancer than a problem with their brain, the messages about how we enable a person to live as well as possible and to minimise carer breakdown are vital.
Supporting independence, choice and control from the earliest point of dementia symptoms makes life easier for everyone, and means that if/when a diagnosis comes the family haven’t already hit a crisis point, unlike us with my dad.
For me, communicating messages about how low-level changes and support at home and in everyday life can help is something we can all do. Keeping connected with family, friends and neighbours, noticing those subtle problems and making small suggestions helps to disseminate ideas about how to cope better pre or post-diagnosis to individuals who are unlikely to ever be googling how to do it.
I signpost to resources, initiatives, toolkits and practical advice constantly, whether I’m writing an article, speaking at a conference, or because I’ve got chatting to a couple in a café that I’ve never met before.
I’ve even been known to give books on dementia – like Wendy Mitchell’s ‘Somebody I used to know’ – as a present to provide information that I know couldn’t be easily discussed. Anything that helps a silent carer to find ways to make life even the tiniest bit easier is important.
As a well-known supermarket is always telling us, ‘Every little helps’.
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