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Dementia

Lonely this Christmas – the reality of living with dementia

One in six people spent last Christmas alone, with a 146 per cent surge in calls to the Alzheimer’s Society for support

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Independent age

A sixth of people with dementia spent Christmas Day last year alone, leaving families struggling with feelings of guilt and anger over their ‘lost Christmas’, new findings from the Alzheimer’s Society have revealed. 

Latest figures estimate that there are now around 900,000 people living with dementia in the UK, despite so many people with the condition having died over the last 18 months, accounting for over one in four deaths from COVID-19.

The survey by the charity also found that:

  • for nearly a third, a 15-minute visit was the only social contact during week of Christmas
  • three-fifths are more likely to struggle to recognise family members since last Christmas
  • two thirds of family carers feel anxious about the Christmas season, with over a sixth of families having to make changes to usual celebrations because of their loved ones’ increase in symptoms (17 per cent).

Of those who did see someone during the week of Christmas, nearly a third merely had a 15 minute visit from either a neighbour, family member or paid carer (30 per cent) and nearly half only had visitors to drop off Christmas dinner and presents (44 per cent).

Families are now planning to revisit plans for this year’s Christmas period, with changing symptoms in their loved one and the ongoing uncertainty around Omicron being major factors in that. 

 Since last Christmas, people affected by dementia have reported that:

  • 60 per cent of people with dementia are less likely to recognise family members
  • 29 per cent find it more difficult to eat
  • 35 per cent find it harder to walk. 

Two thirds of family carers (66 per cent) are already feeling anxious about Christmas, with a quarter now having to cope with increased caring responsibilities due to an increase in their loved ones’ dementia symptoms (24 per cent).

A third are worried they will be left exhausted and won’t get enough respite (30 per cent). This comes after family carers spent 92 million extra hours caring for loved ones with dementia during the pandemic.

The Alzheimer’s Society saw a significant spike in demand for its services during the ‘lockdown Christmas’. Calls soared to double the previous year during the Christmas week, at 146 per cent higher than 2019, remaining high after Christmas too at 71 per cent higher than the previous year.

The charity’s virtual services saw a massive upsurge in searches on its website for topics such as support for carers – an 88 per cent increase from 2019 – with one of the most discussed topics in its online community around how to respond to loved ones in care homes asking if they’re coming home for Christmas, with over 1,500 even visiting the community on Christmas Day.

In response to the findings, Alzheimer’s Society’s Christmas Appeal has been launched to help increase capacity to its support services for anyone desperate for somewhere to turn to this festive season. Alzheimer’s Society’s vital support services have been used over six million times since the pandemic began in March 2020.

Kate Lee, chief executive at Alzheimer’s Society, said: “For many this festive season, the magic of Christmas will be marred by families having to cope with an unmanageable and irreversible decline in their loved ones. People with dementia need us like never before.”

Dementia

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

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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. 

Dementia Carers Count

“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.

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Dementia

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

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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. 

Dementia Carers Count

“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.”

 

 

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Dementia

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

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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.

Dementia Carers Count

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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