Category Archives: Dementia & Carers

Why hospital architects need to talk to nurses

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Hospital building work in East Sussex.
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Jens Roehrich, University of Bath

Many of us pay close attention to how our taxes are spent, and how well governments invest in infrastructure projects such as roads, schools and hospitals. Value for money is key. Yet horror stories of waste, lateness and poor quality are common.

To develop and finance public services and infrastructure, governments around the world (but especially in Europe) have become increasingly keen on private sector involvement. These cross-sector collaborations can help provide value for money for taxpayers – but they are also at risk of wasting it.

In health care, collaborations between public and private partners have a direct impact on society. This is why it is important for health care professionals like doctors and nurses to talk directly to the designers and builders of a new hospital. It ensures that these projects not only deliver economic value for the private companies building the hospital – but also social value for the doctors, nurses and patients who will use the hospital for decades to come.

For instance, in one recently built British hospital, medical staff were able to bring valuable insight to the design process. A visit by some of the hospital’s senior nurses to a children’s hospital in the US led to the replication of a lighting design on the ceiling of a children’s ward so that it mimicked a starry night sky. As one of the nurses explained to me afterwards:

It might sound like a small change, but it provides a much more homely surrounding than the normal NHS lighting. This is important for our young patients [providing a] less scary, hospital experience which positively impacts on the healing process. […] It creates a much nicer environment in which our little patients can recover.

In another hospital, input from senior nurses helped to establish a ward design that most suited their professional needs – right down to the placement of plumbing. This saved large amounts of money that might have been spent on undoing unnecessary building work had the nurses not been consulted.

As one project manager of the construction company told me: “Thanks to [the senior nurses’] input and telling us how they intend to use wards, we changed the ward layout, such as the position of sinks. This may seem to be a minor issue, but may have a huge impact when caring for a patient.”

To see how social value can be best achieved through cross-sector collaborations we looked into the key building blocks that go beyond a mere focus on contracts.

An organisations’ prior experience of cross sector collaboration and a supportive climate is vital in creating social value. It also helps to have had some exposure to previous projects (good and bad). But a major ingredient is the individual employees in both public and private sector organisations.

We need a starry sky ceiling right there.
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Building mutual knowledge and aligning goals between doctors, nurses and design and construction professionals is key, as public and private sector employees often have different objectives for projects (making a profit vs healing patients). A shared understanding can come through listening to and appreciating the other parties’ professional language and the expertise that language expresses.

Joint expertise

Beyond an understanding of the other parties’ expertise, practical matters of shared goals and jointly developed timelines are necessary. Coordinating efforts between the two sectors needs to take priority at the outset – rather than emphasising project speed and completion.

To encourage these positive outcomes, the key people need to meet frequently to exchange information, address problems and discuss plans. Without this kind of coordination and collaboration, it will be impossible to make the most of both sides’ specialist knowledge.

So when it comes to hospitals and clinics, the private company needs to actively seek the involvement of doctors and nurses in the design and construction phases. Similarly, doctors and nurses should not be threatened by private companies, but instead seek to become actively engaged. This will help drive creative design innovations such as the “night sky” ceiling in the children’s ward.

The ConversationIt takes time and resources, but this kind of collaboration and coordination between public and private sectors provides an opportunity to increase value – both economic and social. And that’s something that not only benefits construction companies and health care professionals – but patients and taxpayers, too.

Jens Roehrich, Professor of Supply Chain Innovation, University of Bath

This article was originally published on The Conversation. Read the original article.

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Dementia coaching program offers chance to live well

News Release
August 8, 2018 | Australia, Dementia coaching program offers chance to live well

Support available for Sydney residents diagnosed with dementia
A new University of Sydney trial offers coaching and peer support to help people newly diagnosed with dementia cope with their prognosis and stay active and involved in their lives and community.

“I want to try and help people see they can fight back…you can’t just give into it.”

Bobby Redman, Peer supporter living with dementia

Lead researcher Associate Professor Lee-Fay Low said the pilot study has the potential to fill a vital service gap with the latest research suggesting keeping the mind and body active could slow the progression of dementia.

“Following a dementia diagnosis many people withdraw from their friends and family for fear they will deteriorate quickly and can suffer immense grief or depression,” said Low, Associate Professor in Ageing and Health at the University of Sydney.

“There are over 400 000 Australians currently living with dementia and with a cure still some way off it’s essential that we help people with early dementia to live well.

“We hope that giving people the right support, tools and strategies from the onset could help achieve this.”

The Dementia Lifestyle Coach pilot study is a collaboration between the University’s Faculty of Health Sciences and Brain and Mind Centre.

Participants will receive 14 counselling and coaching sessions from a registered psychologist over a six-month period and will also have a regular phone or skype catch ups with a peer supporter who lives with dementia.


Retired psychologist Bobby Redman is one of the peer supporters involved in the study.

Photo of peer supporter Bobby Redman

Bobby was diagnosed with frontotemporal dementia two and half years ago at age 66 after she noticed problems remembering the names of close friends and an inability to find the right words to express herself.

“My story is a bit different because with my psychology background I knew something was definitely wrong – but a dementia diagnosis is still a shock for anyone,” said Bobby.

“And what’s probably hardest is that, like in my experience, many people with early dementia are just told to come back when things get worse or to get their things in order.

“But I’ve learnt that there are tools and strategies you can put in place to help manage the impact of dementia. Even simple things like using my phone to set daily reminders to drink water and stay hydrated.

“What I’d like to see is more clinicians trained to provide these strategies to people to help them overcome simple issues.

“I want to try and help people see they can fight back. I think that’s the key….you can’t just give into it.”

The pilot study will run over a 12-month period, with researchers aiming to assess the impact the coaching program has on participants’ mood, independence, activity levels and quality of life.

Participant information

The University of Sydney is trialling a counselling and coaching program for people living at home recently diagnosed with early dementia. To be eligible you must have received a diagnosis of early dementia within the past 6 months. Read more information about the Dementia lifestyle coaching study or contact Dr Annica Barcenilla on +61 2 9351 9837 or annica.barcenilla@sydney.edu.au

 

Dementia could be detected via routinely collected data, new research shows

Media Release
July 11, 2018 | United Kingdom, University of Plymouth – Dementia could be detected via routinely collected data, new research shows

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Improving dementia care through increased and timely diagnosis is an NHS priority, yet around half of those living with dementia live with the condition unaware.

Now a new machine-learning model that scans routinely collected NHS data has shown promising signs of being able to predict undiagnosed dementia in primary care.

Led by the University of Plymouth, the study collected Read-encoded data from 18 consenting GP surgeries across Devon, UK, for 26,483 patients aged over 65.

The Read codes – a thesaurus of clinical terms used to summarise clinical and administrative data for UK GPs – were assessed on whether they may contribute to dementia risk, with factors included such as weight and blood pressure.

These codes were used to train a machine-learning classification model to identify patients that may have underlying dementia.

The results showed that 84 per cent of people who had dementia were detected as having the condition (sensitivity value) while 87 per cent of people without dementia had been correctly acknowledged as not having the condition (specificity value), according to the data.

These results indicate that the model can detect those with underlying dementia with an accuracy of 84 per cent. This suggests that the machine-learning model could, in future, significantly reduce the number of those living with undiagnosed dementia – from around 50 per cent (current estimated figure) to 8 per cent*.

Principal Investigator Professor Emmanuel Ifeachor, from the School of Computing Electronics and Mathematics at the University of Plymouth, said the results were promising.

“Machine learning is an application of artificial intelligence (AI) where systems automatically learn and improve from experience without being explicitly programmed,” he said. “It’s already being used for many applications throughout healthcare such as medical imaging, but using it for patient data has not been done in quite this way before. The methodology is promising and, if successfully developed and deployed, may help to increase dementia diagnosis in primary care.”

Dr Camille Carroll, Consultant Neurologist at University Hospitals Plymouth NHS Trust and Researcher in the Institute of Translational and Stratified Medicine at the University of Plymouth, collaborated on the research.

She said:

“Dementia is a disease with so many different contributing factors, and it can be quite difficult to pinpoint or predict. There is strong epidemiological evidence that a number of cardiovascular and lifestyle factors such as hypertension; high cholesterol; diabetes; obesity; stroke; atrial fibrillation; smoking; and reduced cognitive, physical, or social activities can predict the risk of dementia in later life, but no studies have taken place that allow us to see this quickly. So having tools that can take a vast amount of data, and automatically identify patients with possible dementia, to facilitate targeted screening, could potentially be very useful and help improve diagnosis rates.”

The full research, entitled ‘Machine-learning based identification of undiagnosed dementia in primary care: a feasibility study’, was led by the University of Plymouth with collaboration from Re:Cognition Health, Plymouth; the University of Edinburgh; University Medical School, Swansea; Northern, Eastern and Western Devon Clinical Commissioning Group (NEW Devon CCG); and the University of St Andrews.

The paper is available to view in the BJGP Open (doi:10.3399/bjgpopen18X101589).

*8 per cent calculated as follows: 50 per cent of dementia sufferers are undiagnosed, and the machine-learning model detected dementia with 84 per cent accuracy. Therefore 84 per cent of these undiagnosed 50 per cent would be diagnosed using this model = 42 per cent. 8 per cent, the number remaining, would remain undiagnosed.

Miss Amy McSweeny – Media and Communications Officer

What good dementia design looks like – A case study on Dementia Training Australia’s work with Scalabrini Village

DTA and Scalabrini Village case study profiled at Alzheimer’s International Conference in Chicago from Dementia Training Australia on Vimeo.

 

A case study on Dementia Training Australia’s work with Scalabrini Village is featured in the program Every Three Seconds, a collaboration between ADI and ITN Productions which highlights the fact that someone in the world is diagnosed with dementia every three seconds.

Source: https://www.dta.com.au/case-studies-dementia-training-australia/

Majority of Older Adults with Probable Dementia Are Likely Unaware They Have It

Media Release
July 17, 2018 | USA, Baltimore – Majority of Older Adults with Probable Dementia Are Likely Unaware They Have It

Less education and unaccompanied medical visits linked to lack of formal diagnosis or awareness of diagnosis

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A Johns Hopkins Medicine analysis of information gathered for an ongoing and federally sponsored study of aging and disability adds to evidence that a substantial majority of older adults with probable dementia in the United States have never been professionally diagnosed or are unaware they have been.

A report of the findings was published in the July issue of the Journal of General Internal Medicine. Most of the findings, the researchers say, confirm previous similar estimates, but unaccompanied visits to a doctor or clinic emerged as a newly strong risk factor for lack of formal diagnosis or awareness of diagnosis.

“There is a huge population out there living with dementia who don’t know about it,” says Halima Amjad, M.D., M.P.H., assistant professor of medicine at the Johns Hopkins University School of Medicine and the study’s lead author. “The implications are potentially profound for health care planning and delivery, patient-physician communication and much more,” she says.

Overall, Amjad says, “If dementia is less severe and people are better able to perform day-to-day tasks independently, symptoms of cognitive loss are more likely masked, especially for patients who visit the doctor without a family member or friend who may be more aware of the patient’s symptoms.”

An estimated 5.7 million people in the United States live with dementia, according to the Alzheimer’s Association, but only half of those have a documented, official diagnosis by a physician. Timely diagnosis is important for maintaining or improving health and planning care, says Amjad, so it’s important to identify which populations are less likely to be diagnosed or less likely to be aware of their diagnosis.

Building on previous research, which identified activities and living conditions linked to dementia diagnosis, Amjad sought this time to pinpoint at-risk populations nationwide.

To do so, Amjad and the research team drew on data from the National Health and Aging Trends Study, an ongoing study of Medicare recipients ages 65 and older across the United States, and selected those who met criteria for probable dementia in 2011 and had three years of continuous fee-for-service Medicare claims before 2011. The latter information helped the researchers determine whether participants’ physicians had billed for dementia diagnosis and/or care.

The research team identified 585 such adults and examined demographic data such as highest level of education attained, race/ethnicity and income, as well as data on whether participants were able to perform activities such as laundry, shopping or cooking on their own.

Among those with probable dementia, 58.7 percent were determined to be either undiagnosed (39.5 percent) or unaware of their diagnosis (19.2 percent).

Participants who were Hispanic, had less than a high school education, attended medical visits alone or were deemed more able to perform daily tasks were more likely to be undiagnosed. Specifically, those with at least a high school education had a 46 percent lower chance of being undiagnosed compared with those who had less education; and those who attended medical visits alone were twice as likely to be undiagnosed than those who were accompanied.

Participants who were diagnosed but unaware of their diagnosis had less education, attended visits alone more often and had fewer functional impairments. Those with at least a high school education had a 58 percent lower chance of being unaware compared with those who had less education. Those who attended medical visits alone were about twice as likely to be unaware than those who were accompanied. Each activity impairment decreased the chance of being unaware of diagnosis by 28 percent.

While Amjad acknowledges that the study is limited by potentially inaccurate self-reporting of dementia diagnoses, possible discrepancies between medical record documentation and billing codes, and the use of older data, she says the findings will likely help physicians be more alert to people who may need more careful screening.

“There are subsets of people doctors can focus on when implementing cognitive screening, such as minorities, those with lower levels of education and those who come in by themselves,” says Amjad.

Looking forward, Amjad plans to study whether documentation of a dementia diagnosis is meaningful if patients and family members don’t understand what a diagnosis means.

Other authors of the report include David L. Roth, Orla C. Sheehan, Constantine G. Lyketsos, Jennifer L. Wolff and Quincy M. Samus, all of Johns Hopkins.

Funding for this study was provided by The National Health and Aging Trends Study (NHATS) sponsored by the National Institute on Aging (U01AG032947). Amjad received funding from the National Center for Advancing Translational Sciences/Johns Hopkins Institute for Clinical and Translational Research (KL2TR001077).

Commonly prescribed medications linked to rise in harmful side effects in dementia

News Release
July 2018 | United Kingdom – Commonly prescribed medications linked to rise in harmful side effects in dementia

Medications which are commonly prescribed to people with dementia have been linked to an increase in harmful side-effects, research involving the University of Exeter has concluded.

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The research, presented at the Alzheimer’s Association International Conference (AAIC) examined the impact of opioid-based painkillers or a class of sleep medication known as Z drugs (zolpidem, zopiclone and zaleplon). They are prescribed to an estimated 200,000 with dementia living in care homes across the UK in total.

In the opioid painkiller research, a team from the University of Exeter, King’s College London and the University of Bergen highlight a tripling in harmful side effects related to the use buprenorphine in people with dementia, compared to those on a placebo. Researchers also identified a mechanism that may be causing the problem.

In a randomized controlled trial of 162 Norwegian care home residents, the team found a significant rise in side effect such as personality changes, confusion and sedation, which can seriously impact people’s lives in dementia. The trial team, led by the University of Bergen, studied 162 people from 47 Norwegian care homes who had advanced dementia and significant depression. In those who were assigned buprenorphine as part of their treatment pathway, harmful side-effects more than tripled. The researchers also found that those taking buprenorphine were significantly less active during the day.

In the Z-drugs research, the team compared data for 2,952 people with dementia who were newly prescribed the medication with data for 1,651 who were not – in order to evaluate the benefits and harms of the medicines. They found that people who take Z-drugs are more likely to fracture a bone than those who do not. Bone fractures are related in turn to an increased risk of death in people with dementia.

Researchers are now calling for studies to examine alternative non-drug approaches to treating pain and insomnia, and appropriate dosing of painkillers such as buprenorphine for people with dementia. Clive Ballard, Professor of Age-Related Diseases at the University of Exeter Medical School, said: “Research into antipsychotics highlighted that they increased harmful side effects and death rates in people with dementia. This compelling evidence base helped persuade everyone involved in the field to take action, from policy makers to clinicians, reducing prescribing by 50 per cent. We now urgently need a similar concerted approach to opioid-based painkillers and Z-drugs, to protect frail elderly people with dementia from fractures and increased risk of death.”

Importantly, research led by Professor Ballard’s team and also presented at the conference also gives insight into the mechanism of why people with dementia are more susceptible to opioid-based painkillers, suggesting they over-produce the body’s natural opioids.

The study treating arthritis in Alzheimer’s mice found increased sensitivity to the opioid-based painkiller morphine in mice with Alzheimer’s disease compared to those without. Those with Alzheimer’s disease responded to a much lower dose to ease pain, and experienced more adverse effects when the dose was increased to a normal level. Looking into this further the study found that the Alzheimer’s mice produced more of the body’s natural endogenous opioids such as endorphins. The study, presented as a poster at AAIC, also concludes that dosing of opioid-based painkillers urgently needs to be reviewed in people with dementia to enable safe and effective treatment of pain, and prevent unnecessary harm and deaths.

Posters presented at conference have not yet been through the journal peer review process.

Watch carers talk about their experience of the WHELD training. To find out more about our world-leading dementia research, follow #ExeterDementia and @Clive_Ballard on Twitter, or visit the Exeter Dementia website.

Just ten minutes of social interaction a day improves wellbeing in dementia care

News Release
July 2018 | United Kingdom – Just ten minutes of social interaction a day improves wellbeing in dementia care

An e-learning programme that trains care home staff to engage in meaningful social interaction with people who have dementia improves wellbeing and has sustained benefits.

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The average person with dementia in a care home experiences just two minutes of social interaction each day, researchers found. They also showed that out of 170 available training programmes for nursing home staff, only three are evidence-based – none of which improve quality of life.

The Wellbeing and Health for people with Dementia (WHELD) programme trained care home staff to increase social interaction from two minutes a day to ten, combined with a programme of personalised care. It involves simple measures such as talking to residents about their interests and involving them in decisions around their care.

The Improving Staff Attitudes and Care for People with Dementia e-Learning (tEACH) study, conducted by the University of Exeter Medical School and King’s College London in partnership with the Social Care Institute for Excellence (SCIE), was presented at the Alzheimer’s Association International Conference 2018. The study involved 280 residents and care staff in 24 care homes over nine months.

Carers took part in an e-learning programme based on the WHELD training, with or without Skype supervision. They compared outcomes to usual care. Both treatment arms improved resident wellbeing and staff attitudes to person-centred care. The Skype supported arm continued to deliver improved resident wellbeing four months after the trial was completed.

Joanne McDermid, of King’s College London, who presented the research, said: “Care home staff are under a lot of pressure – it’s a really tough job. It’s a challenging environment for both residents living with dementia and staff. Our programme moved care staff to see dementia through the eyes of those who are living it. We found a simple approach, delivered as e-learning, improves staff attitudes to care and residents’ wellbeing, ultimately improving lives for people with dementia.

“In a traditionally task -focussed work environment, our programme reminds us of the human side; of the full life experience of those living with dementia in care.”

Professor Clive Ballard, of the University of Exeter Medical School, who led the research, said: “Just take a moment to imagine life with just two minutes of social interaction each day. To accept this is discrimination against people with dementia. We urgently need to do better. Most care home training programmes are not evidence-based. We know our programme works over the long term, and we now know it can be delivered remotely. We now need to roll this out to care homes.”

Watch carers talk about their experience of the WHELD training. To find out more about our world-leading dementia research, follow #ExeterDementia and @Clive_Ballard on Twitter, or visit the Exeter Dementia website.