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/
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
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).
News Release
July 2018 | United Kingdom – Commonly prescribed medications linked to rise in harmful side effects in dementia
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.
News Release
July 2018 | United Kingdom – Just ten minutes of social interaction a day improves wellbeing in dementia care
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.
Another great resource from Dementia Australia!
Media Release
June 2018 | Australia – ‘It’s Not a Disgrace, It’s Dementia’ film released
Source: Dementia Australia
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 documentary-style film, titled ‘It’s Not a Disgrace, It’s Dementia’, is available online at youtube.com/watch?v=KYrD7R-5egk(link is external)
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
News Release
May 2017 | Australia – University of Wollongong students take dementia-friendly home to Dubai
Source: Dementia Australia
Meet Desert Rose, a state-of-the-art home of the future, for the future.
Designed by students from the University of Wollongong (UOW) and TAFE Illawarra, Desert Rose boasts a mix of dementia-friendly features and building design elements, many of which are not currently available on the market and won’t be for another five or 10 years.
Not something out of a sci-fi movie Professor Tim McCarthy, Faculty Advisor for Team UOW Australia-Dubai, hopes Desert Rose will become a new standard in age-friendly design and win Team UOW their second Solar Decathlon when they take their design to Dubai in 2018.
“Desert Rose is a house for life, catering for a couple who are currently active and considering their future, say in their mid-fifties,” Professor McCarthy said.
“They are downsizing to a comfortable, beautiful and bill-free home. The house has features that enable it to adapt to possible future needs resulting from age-related disabilities. It encourages wellness.”
Desert Rose is also dementia-friendly and largely inspired by the work of Dementia Training Study Centre director Professor Richard Fleming and Research Fellow at the Centre for Health Initiatives Dr Lyn Phillipson, both also from UOW.
Professor McCarthy said consultation with members of the Kiama Dementia Alliance and Advisory Group initially influenced the design and evaluation of the prototypes as they arise would include the group and other consumer networks.
Dementia-friendly design elements featured in Desert Rose include:
Line of sight to key facilities – a person with dementia is eight times more likely to use the toilet (especially at night) if they can see the toilet bowl, the occupant of Desert Rose can see the bowl from their position in bed and from the lounge.
Accessibility for people with limited mobility – doors and furniture allow easy navigation with a walking frame, which typically requires a greater turning circle than a wheelchair.
No steps – you can drive a mobility scooter into the kitchen to unload shopping.
Strong points – located in the wall frames allowing railings to fix to the bathroom wall and other places as needed. The ceiling in the bedroom has a built in strongpoint for connecting a hoist to get the person in and out of bed should the need arise.
Sensors – activity monitoring using ubiquitous, but not intrusive technologies such as, low-resolution special infrared sensors that can recognise if someone is standing or lying down, or has fallen. Sensors in the bed can detect is the occupant has woken in the night which can trigger the bathroom light to turn on, followed by the vanity and then back to bed. “Ushering” like this can assist a person with dementia to function without the intervention of a carer. The house can learn the normal patterns of activity and trigger alarms for anomalies.
Professor McCarthy said UOW research into user-acceptance informed the technologies and sensors, which could not be used as a fix-all. He acknowledged some people, may react badly to some forms of monitoring.
Thermal comfort, contrasting colours (especially in the bathroom), brightness, mood and colour controlled LED lighting and retro looking devices are also important features of Desert Rose.
“Research at the Sustainable Buildings Research Centre, co-supervised by Professor Fleming, has shown that thermal comfort is very important for the care of people living with dementia,” Professor McCarthy said.
“If the person becomes too hot, sweaty or cold, it can cause anxiety and agitation which may lead to changes in behaviour, sedative use and so on. Our work by Federico Tartarini has shown that by controlling the temperature and humidity, people with dementia are happier.”
The Solar Decathlon is an international competition that requires teams to design and build an affordable and architecturally beautiful, net-zero energy house.
The full-sized house must then be transported to the competition site in Dubai to compete against the top universities and vocational education and training providers from around the world.
Twenty-two teams from 16 different countries will come together for the Solar Decathlon Middle East 2018 finals held in Dubai in November – including Team UOW and Desert Rose.
Professor McCarthy said the thermal comfort aspects of Desert Rose fit well with the Solar Decathlon competition, as the house must remain between 22 and 25 degrees Celsius with humidity below 65% at all times.
“Excellent insulation and air tightness help us to maintain these settings while using very little energy for heating and cooling,” Professor McCarthy said.
Professor McCarthy said while it was not common for Australian homes (even new ones build to current code) to display such air tightness and energy efficiency, it is common in countries such as Germany where they have developed the Passivhaus standard.
The features of Desert Rose are built-in from day one and allow for easy adaptation later.
“They can be difficult to retrofit to an existing house if they have not been pre-planned while other aspects are easier to retrofit,” he said.
While ultra-modern in terms of technology and design, the home uses retro looking devices with modern abilities.
“We will avoid many new-fangled devices, which would be unfamiliar to a person living with dementia,” Professor McCarthy said.
“Many people revert to what they experienced in their twenties or a particular period of their lives. Simple tap fixtures, lighting controls and communications devices are often better than the ultra-modern or automatic devices.
“How often have you been in a public bathroom and not known how to turn on the water – or if it will turn off automatically? The taps in Desert Rose can look familiar but have built-in safety and water saving features, heat limits to prevent scalding, a reminder to turn off (might be a voice prompt) and an automatic shut-off if a tap is left running too long.”
Professor McCarthy said this was just a snapshot of Desert Rose and that Team UOW were keeping a few tricks up their sleeve ahead of the competition.
“Of the 22 teams who are designing and building net-zero energy homes, Team UOW are the only team targeting this most important social issue,” he said.
Professor McCarthy said even in United Arab Emirates where the population is relatively young, the demographics showed that by 2050 this will have changed with over 20% of their population being over 65.
“So we believe that our house which has been named Desert Rose, after Sturt’s Desert Rose (a flower that blooms in the most difficult circumstances) is a vital part of preparing not just Australia, but also the Middle East for the need of our ageing populations,” he said.
“What is so great about this is that every aspect of the concept has come from our students. They are demonstrating real leadership in tackling our current and future housing needs.”
With a lot of interest from developers of retirement living units and age care providers Professor McCarthy hopes the dementia-friendly features of Desert Rose may be available on the market and part of the Australian Building Code more quickly.
Keep up-to-date with the latest news from Team UOW’s Desert Rose(link is external) and the Solar Decathlon Middle East 2018.
Designing for Aged Care 