You’re the voice: the evolution of the PainChek app

News Release
April 2018| Australia – You’re the voice: the evolution of the PainChek app

How can someone tell you they’re experiencing pain or discomfort that isn’t overtly visible, if they can’t communicate through speech? Professor Jeff Hughes from Curtin’s School of Pharmacy and Biomedical Sciences has created an app that gives a voice to people who are living with conditions that impact upon their ability to verbally communicate with others.

Elderly woman sitting down holding a phone with man sitting behind her.

One of these conditions is dementia, a neurodegenerative condition that affects the brain’s cognitive ability. It’s currently the second leading cause of death in Australia, and with the number of people living with dementia set to reach more than 536,000 by 2025, the demand for tools that help treat and manage the condition is sure to increase.

Professor Hughes’ brainchild was the world’s first smartphone app for pain assessment and monitoring, developed under the banner of Curtin start-up company ePAT (electronic Pain Assessment and Technologies Ltd) from 2014. The start-up was acquired by PainChek Ltd in 2016, and the app is now being further developed and marketed by the company as ‘PainChek’.

The app provides an accurate and reliable means for healthcare professionals and family members providing care at home to assess pain, and ultimately help to improve quality of life for those they care for.

“A significant issue among people with advanced dementia is that they no longer have the communication skills to express the level of pain they are suffering,” Hughes explains.

“The seriousness of their pain can often go unrecognised. But PainChek, a smart-device app, which utilises automation and artificial intelligence, allows for the detection and quantification of pain, based in part on a patient’s facial expressions.

PainChek uses facial recognition and a 42-point pain scale to help healthcare professionals and family members decipher the level of pain being experienced by their patient or family member, allowing them to respond accordingly. A level between zero to six represents no pain, seven to 11 mild pain, 12 to 15 moderate pain and anything above 15 means severe pain.

The tailored pain scale was developed by Hughes and his team through a tireless review of existing literature and tools, including the well-known Abbey Pain Scale, an observational pain assessment tool used nationally in the assessment of pain in people with dementia.

PainChek automates pain assessment, allowing for the continual evaluation of pain, and providing the user with access to a personalised pain chart of their patient or family member, which has been mapped over an extended timeframe. The chart is designed to be used in conjunction with other information recorded on the app, which correlates with or affects pain levels, such as medication types and dosages, activity levels and behaviour. All recorded data is backed up when the device is connected to the internet.

Since its inception in 2013, Hughes and his team have been working hard to assess and monitor the performance of the app. They’ve conducted validation studies with a range of Perth-based aged care providers, including Mercy Care, Juniper, Bethanie and Brightwater, comparing each generation of the app with the Abbey Pain Scale. Data from these trials was used to support the registration of the app as a Class 1 medical device in Australia (Therapeutics Goods Administration registration) and Europe (CE Mark) by PainChek Ltd.

Trials in aged care facilities were successful, validating the functionality and purpose of PainChek. One of the residents living with dementia was previously cared for at home by her husband. He says the app has been an invaluable tool for assessing his wife’s constant lower back pain.

“When we tested the app on my wife, we got a score of four out of 10. It was so quick and accurate. She’s in pain constantly with her lower back, and has trouble sitting down. The pain scale changes daily, and it makes me feel really comfortable that I can administer the necessary pain killers at any given time.”

In addition, the research has led to the development of a partnership with Dementia Support Australia, which comprises the two entities Dementia Behaviour Management Advisory Service and Severe Behaviour Response Teams.

“Dementia Support Australia sends consultants out to assist in the care of people living with dementia who have significant behavioural problems,” Professor Hughes says.

“What they had found from their own observations was that somewhere between 35 to 60 per cent of the people had undetected or undertreated pain, and they wanted the means to improve the assessment and documenting of that pain, and better demonstrate the effectiveness of their service.

“PainChek Ltd are effectively doing an implementation trial with them, starting here in Western Australia and then in South Australia. As part of the trial, we provide training and, after each roll out, we also offer clinical and technical support. In 2018, we’ll roll out the app to all 150 of their consultants Australia-wide.”

The development of the app hasn’t stopped there, with PainChek Ltd working on adaptations that can cater for other groups unable to communicate verbally: infants and pre-verbal children.

“Twenty per cent of children have chronic pain, with common causes being headaches and gastrointestinal or musculoskeletal conditions. And that pain can produce a whole range of issues, such as behavioural problems, poor interaction with others and avoiding school. Most people think that little kids don’t feel pain the way adults do, but we’re learning this isn’t the case,” Hughes reveals.

The intended impact of the children’s app is three-fold. One, to provide parents with surety about whether they’re taking the appropriate action. Two, to assist healthcare professionals in deciding what level of pain a child might be in and which medication to administer if applicable, and three, to encourage the investigation of the root cause of the pain to then seek the appropriate treatment.

Much like the adult app, the children’s app contains a number of items to help assess pain, however, the facial recognition element is far more in-depth due to the fact that children typically use more pain-associated facial expressions than adults. As a result, Hughes’ team has been capturing videos of children who are in pain, primarily during the immunisation process, with each video contributing to a database of coded images. With a preliminary algorithm already built, PainChek Ltd plans to have the first prototype available for trialling in 2018.

More information about the  app can be found on the PainChek website.

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/

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.

antibiotic blur cocktail glass cocktail tablets
Photo by Pixabay on Pexels.com

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.

Neglect common in English care homes

News Release
March 21, 2018 | London – Neglect common in English care homes

The largest-ever survey of care home staff in England, led by UCL researchers, has found that neglectful behaviours are widespread.

Elder care

For the study, published today in PLOS ONE, care home staff were asked anonymously about positive and negative behaviours they had done or had witnessed colleagues doing.

Dr Claudia Cooper (UCL Psychiatry), the study’s lead author, said: “We found low rates of verbal and physical abuse; the abusive behaviours reported were largely matters of neglect.

“These behaviours were most common in care homes that also had high rates of staff burnout, which suggests it’s a consequence of staff who are under pressure and unable to provide the level of care they would like to offer.”

From 92 care homes across England, 1,544 care home staff responded to the survey. The staff were asked whether they had, in the past three months, witnessed a range of positive and negative behaviours. Their responses were linked to data from each care home describing a measure of burnout in care home staff.

Some negative behaviours were categorised as ‘abusive’, using a standard definition,* and based on the behaviour reported, rather than the intention of the care home staff. The most common abusive behaviours were: making a resident wait for care (26% of staff reported that happening); avoiding a resident with challenging behaviour (25%); giving residents insufficient time for food (19%); and taking insufficient care when moving residents (11%). Verbal abuse was reported by 5% of respondents, and physical abuse by 1.1%.

At least some abuse was identified in 91 of the 92 care homes.

Positive behaviours were reported to be much more common than abusive behaviours, however some positive but time-consuming behaviours were notably infrequent.  For instance, more than one in three care home staff were rarely aware of a resident being taken outside of the home for their enjoyment, and 15% said activities were almost never planned around a resident’s interests.

“Most care homes, and their staff, strive to provide person-centred care, meaning that care is designed around a person’s needs, which requires getting to know the resident and their desires and values. But due to resources and organisational realities, care can often become more task-focused, despite intentions and aspirations to deliver person-centred care,” said co-author Dr Penny Rapaport (UCL Psychiatry).

“Carers can’t just be told that care should be person-centred – they need to be given the support and training that will enable them to deliver it,” she said.

The study is part of the UCL MARQUE cohort study, which is also looking into cost-effective interventions to improve the quality of care for people with dementia, and will be using this anonymous reporting as a measure of how well training interventions are working.

More than two thirds of care homes residents have dementia. Agitated behaviours such as pacing, shouting or lashing out are more common in dementia, and can make provision of person-centred care very challenging for care staff to deliver, often with minimal training and limited resources.

“With the right training, care home staff may be able to deliver more effective care that doesn’t need to be more expensive or time-consuming. If they understand and know how to respond to behaviour, they may be able to do more without greater resources,” said the study’s senior author, Professor Gill Livingston (UCL Psychiatry).

Dr Doug Brown, Chief Policy and Research Officer at Alzheimer’s Society, commented: “70% of people living in care homes have dementia, and it’s clear from these findings that they’re bearing the brunt of a chronically underfunded social care system.

“It’s upsetting but unsurprising that abusive behaviours were more common in homes with higher staff burnout. We’ve heard through our helpline of people with dementia not being fed, or not getting the drugs they need, because a carer isn’t properly trained, or a care home is too short-staffed.

“By 2021, a million people in the UK will have dementia. The government must act now, with meaningful investment and reform, or we risk the system collapsing completely and people with dementia continuing to suffer needlessly.”

The study was conducted by researchers at UCL and the Camden and Islington NHS Foundation Trust, and funded by the Economic and Social Research Council and the National Institute for Health Research.

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Media contact

Chris Lane

Tel: +44 (0)20 7679 9222

Email: chris.lane [at] ucl.ac.uk

Oversedation in Nursing Homes

Source: Human Rights Watch
Published: 5th Feb 2018

The human rights watch has produced a report on the use of sedation in nursing homes. The report titled “they want docile” highlights the plight of people with dementia being chemically restraint through overmedication of antipsychotic drugs.

 

Read the full report here https://www.hrw.org/report/2018/02/05/they-want-docile/how-nursing-homes-united-states-overmedicate-people-dementia 

Too many times I’m given too many pills…. [Until they wear off], I can’t even talk. I have a thick tongue when they do that. I ask them not to [give me the antipsychotic drugs]. When I say that, they threaten to remove me from the [nursing] home. They get me so I can’t think. I don’t want anything to make me change the person I am.
—Walter L., an 81-year-old man given antipsychotic drugs in a Texas nursing facility, December 2016.

It used to be like a death prison here. We cut our antipsychotics in half in six months. Half our residents were on antipsychotics. Only 10 percent of our residents have a mental illness.
—A director of nursing at a facility in Kansas that succeeded in reducing its rate of antipsychotic drug use, January 2017.

Trishaws anyone?

A beautiful intergenerational activity to celebrate the love of cycling, a spot of reminiscence, and the great outdoors.

 

How lovely is this? As a child, my mother and I use to jump on a trishaw after our trip to the wet market. I use to watch the spokes go round and round and I still can hear the “Tak tak tak” sound the wheels make as we head home. It’s always a magical experience no matter how short the trip was. Took less than 5 minutes to reach our home from the market on a trishaw and I’ve sat in it for years and years with my mum, but it never grows old. With the wind in my face, the clicky round of the rickshaw, and just cuddled beside my mum with all our groceries at my feet, the world was our oyster.

When Cycling Without Age it just brought back all these lovely memories of my childhood. I wondered how wonderful would this be for it to be reintroduced into the community. There would be so many older adults in Asia whose main form of transport was the bicycle or the trishaw at a point of their time in their youth. As we aged and our physical abilities deteriorate, we lose our abilities to cycle and with it, our memories of freedom, that wind in your hair, the road just beneath your feet, to go wherever you wanted to go and be wherever you wanted to be.

Such an intervention can only bring generations together, a real intergenerational project of adventure and bonds. To bring people closer through the love of freedom and the outdoors.

I’m so glad to see this in Singapore and I hope that more Singaporeans will jump on board to support this movement!

If you have time, have a read of these 21 inspirational stories from Cycling without Age http://cyclingwithoutage.org/book/