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.
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.
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 email@example.com
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.
“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.
*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
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.
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.
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.
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.”
A new short film has been released for the Hindi-speaking community, designed to encourage acceptance of dementia as a medical condition, and not a normal part of ageing.
This is the latest in an award-winning series of films aimed at a number of non-English speaking communities in Australia to help de-stigmatise and promote awareness of the condition. The film was developed to help dispel myths and educate the community about the condition.
The film provides up-to-date information on dementia through interviews with Hindi-Australian doctors, carers, counsellors and the stories of the friends, families and carers of people diagnosed with dementia.
Dementia Australia counsellor Vandita Nijhawan said in the Indian community there can be shame when talking about things that happen within the house to outsiders, particularly when it affects the brain.
“Dementia is nothing to be ashamed of. I encourage people to use the free services available through Dementia Australia, which include translations of information about dementia,” Ms Nijhawan said.
The video reassures friends and families of those diagnosed with dementia that feelings of shame or embarrassment can be alleviated by understanding that dementia is a common disease, such as heart disease or high blood-pressure.
The ‘It’s Not a Disgrace It’s Dementia’ series of films are short and family-friendly, running at around 15 minutes in length. They are available in Spanish, Italian, Portuguese, Mandarin, Arabic, Serbian, Cambodian, Vietnamese, Assyrian, Croatian and Ukrainian, each with English subtitles.
This latest film has been produced by Dementia Australia in partnership with Why Documentaries and the Multicultural Communities Council of the Illawarra. Dementia Australia would also like to thank Sri Om Care and the Australian-Indian Aged Care Support Holistic Association (AASHA) for their participation in the filming.
For more dementia resources in Hindi visit dementia.org.au/resources/hindi
Our study compared home-like models (which have up to 15 residents per unit and free access to outdoor areas) to more standard residential care, where a large number of people are housed in one building. In 2011, around half of all facilities in Australia had places for more than 60 residents, and the average size is growing.
The World Health Organisation has stated smaller home-like residential care settings “hold promise for older people, family members and volunteers who provide care and support”. But Australia is lagging behind other countries in offering alternative models of residential aged care.
Most older people with dementia want to stay at home as long as they can. When this is no longer possible, they move into residential aged-care facilities, which become their homes.
These residential facilities, or nursing homes, frequently adopt a model of care that emphasises individuality. This is known as person-centred care. But delivering this model may require more staff or a different mix of staff, which may be difficult to deliver with current funding.
So standard aged-care facilities in Australia often have some similarities to health facilities, with designated staff areas and centralised kitchens. Access to outdoor areas, particularly for people with dementia, may depend on the availability of staff. Despite adhering to philosophies such as person-centred care, the scheduling of this care and of meals often lacks flexibility.
The problems are compounded when residential care is used for multiple purposes ranging from palliative care to providing care for people with dementia. The needs of these two groups are quite different and the lack of focus makes delivering quality care a challenge.
Our study was specifically designed to include people with dementia and their family members. People with dementia are not often included in research studies.
It included 541 participants from 17 not-for-profit residential aged-care facilities in four different states in Australia. They had been residents for a year or longer.
These facilities were all considered high quality. This means they had lower hospitalisation rates for potentially avoidable conditions than the national performance target. And more than 80% of residents in the standard care facilities indicated they felt as safe as they wanted and that their environment was as clean and comfortable as they wanted.
Around one-quarter of people in the study lived in a facility with a home-like model of care. All of them were living with dementia.
The study found residents in home-like models of care had a better quality of life, as rated by the residents themselves or their family members. They also had a 68% lower rate of being admitted to hospital and 73% lower rate of having an emergency department presentation.
We have previously shown residents who lived in a home-like model were 52% less likely to be exposed to potentially inappropriate medications. These are medications where the potential harms may outweigh the benefit, such as antipsychotics or relaxants, but are still often prescribed to older people in residential care.
The benefits for residents were provided with similar running costs for the home-like and the standard models of care. However, the costs excluded differences in the build of the facilities. Initial establishment costs are likely to be higher, due to the requirement for more space per resident.
Funding arrangements don’t incentivise Australian aged-care providers to offer variety in terms of models of care. Government funding is provided based on the assessed care needs of the residents, rather than the preferred model of care or resident outcomes.
Funding supplements are available to care providers for reasons such as residents’ financial hardship or risk of homelessness and to small, rural aged-care service providers, but none are available for offering an alternative model of care.
The Australian government plans to improve the aged-care system to offer “choice and flexibility”. This is crucial, but we also need to improve choice and variety in residential aged-care models.