Category Archives: Dementia Research & Best Practice

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

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The onset of Alzheimer’s disease: the importance of family history

News Release
February 26, 2018 | QUEBEC – The onset of Alzheimer’s disease: the importance of family history

You’re about to turn 60, and you’re fretting. Your mother has had Alzheimer’s disease since the age of 65. At what age will the disease strike you? A Canadian study published in JAMA Neurology shows that the closer a person gets to the age at which their parent exhibited the first signs of Alzheimer’s, the more likely they are to have amyloid plaques, the cause of the cognitive decline associated with the disease, in their brain.

In this study involving a cohort of 101 individuals, researcher Sylvia Villeneuve (Douglas Mental Health University Institute; CIUSSS de l’Ouest-de-l’Île-de-Montréal) shows that the difference between a person’s age and the age of their parent at the onset of the disease is a more important risk factor than their actual age.

A 60-year-old whose mother developed Alzheimer’s at age 63 would be more likely to have amyloid plaques in their brain than a 70-year-old whose mother developed the disease at age 85,” explains Villeneuve, an assistant professor at McGill University and a core faculty member at The Neuro’s McConnell Brain Imaging Centre.

Her team of scientists also found that the genetic impact of Alzheimer’s disease is much greater than previously thought.

“Upon examining changes in the amyloid biomarker in the cerebrospinal fluid samples from our subjects, we noticed that this link between parental age and amyloid deposits is stronger in women than in men. The link is also stronger in carriers of the ApoE4 gene, the so-called ‘Alzheimer’s gene’,” says Villeneuve.

Towards earlier detection of the disease

The researcher and her team successfully duplicated their results in two independent groups, one, consisting of 128 individuals from a University of Washington-St. Louis cohort, the other consisting of 135 individuals from a University of Wisconsin-Madison cohort. They also reproduced their results using an imaging technique that enables one to see amyloid plaques directly in the brains of living persons.

Their study is paving the way for the development of inexpensive methods for the early identification of people at risk for Alzheimer’s disease. According to the Alzheimer Society of Canada, 564,000 Canadians currently have Alzheimer’s disease or another form of dementia. The figure will be 937,000 within 15 years. Presently, there is no truly effective treatment for this disease.

This research was funded by grants from a Canadian research chair, the Canadian Institutes of Health Research, the Canadian Foundation for Innovation, the Canadian Brain Research Fund, the Alzheimer Society of Canada, and the Fonds de recherche du Québec — Santé.

The article entitled “Proximity to parental symptom onset and amyloid burden in sporadic Alzheimer’s disease” was published in JAMA Neurology on February 26, 2018. DOI:10.1001/jamaneurol.2017.5135

Source: http://www.douglas.qc.ca/?locale=en

Learning from zoos – how our environment can influence our health

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CoolR/Shutterstock

Emmanuel Tsekleves, Lancaster University

We are told that we are a nation of couch potatoes, lacking the will and the strength to turn around the obesity tanker. We all need a little help in our quest for a healthier life and design can play a crucial part. If we designed our towns, cities, homes and workplaces more like animal experts design zoos, we could be one step nearer to reaching our fitness goals – as long as we can have some fun along the way.

It is reported that British people will be the fattest in Europe by 2025 and that if we want to reverse this we should have a healthier lifestyle by exercising more and eating less. But we are often made to feel guilty for not sticking to theses healthy lifestyle plans. I would suggest that before we start blaming people for adopting sedentary lifestyles, we should be taking a step back to look at the design of the environments, towns and cities in which we live.

The link between the design of the built and natural environment and its role in our health and well-being has been well explored. Now new research, led by Lancaster University, on “design for health” suggests that the environment, including buildings, cities, urban spaces and transport infrastructure, is closely linked to the lifestyles we adopt.

What is abundantly clear is that, as we shape our environment, it is also shaping us. Our psychological, physiological and physical status as well as our interactions with other people and with the natural environment are all affected. A key challenge that governments and policy makers worldwide are facing is how our built environment and infrastructure should be shaped to support healthier behaviours to prevent disease.

First, we should stop focusing on methods that tell people what to (or not to) do and which attempt to change their behaviour simply through media campaigns and punitive measures, such as tax schemes. While seeking to minimise the barriers that prevent healthy behaviours, we should make sure that the design of new environments is taken into account.

Looking to zoos

A good model would be to look at how zoos are designed. Before a zoo is built, it is common practice for zoologists, biologists, animal psychologists, nutritionists, architects, designers and landscape architects to work closely together to create an environment that optimises the living conditions for the animals.

Important environmental elements, such as vegetation, habitat, lighting, materials and each animal’s requirements are taken into account. The ultimate aim is to design an environment that fully supports the animals’ physical, psychological and social well-being. Ironically, we do not seem to make the same demands when a town, neighbourhood or workplace environment for humans is planned and designed.

Another opportunity that has recently emerged is the healthy new town NHS initiative. The aim is to radically rethink how we live and take an ambitious look at improving health through the built environment. Ten demonstrator towns will be built across England with community health and well-being as their main focus. Clinicians, designers and technology experts will reimagine how healthcare can be delivered in these places. Although this is a step in the right direction, what it is currently missing is the more holistic approach we have seen in the design of the zoos.

A crucial element in designing these towns so they are places that people would want to live in, is to include community members in their creation. This strategy would help design-in health-promoting behaviours, such as access to healthy food outlets or green spaces in which people can walk and exercise.

Embracing playfulness

Playful design – the mapping of playful experiences from games and toys to other non-game contexts – can play an important role here in inviting and encouraging people towards healthier alternatives. For example, the piano stairs project in Stockholm, which converts the metro stairs into a giant functioning piano keyboard – much like the piano made famous in the Tom Hanks movie Big (1988) – demonstrates great promise. It encourages commuters to opt for the intriguing new stairway instead of the escalators to enjoy making musical movements as they go up and down.

A project in The Netherlands, meanwhile, illustrates how everyday street furniture, such as lampposts, benches and bollards, can be inexpensively converted into impromptu exercise devices, inviting people to engage in casual activity and socialise with their neighbours. We could therefore envisage several other contexts were playfulness can transform mundane everyday activities into fun ones that encourage people into a more active and social lifestyle.

We could convert building walls into activity walls to encourage stretching of arms and legs through touch; redesign public squares and walkways into interactive dance floors that invite movement and guide you through a city; and transform workplace spaces and public places into “playgrounds” that boost movement and productivity and decrease lethargy.

The Conversation

So there you have it. If we want to be a nation of lean, mean and healthy citizens we need to learn from zoos and the animals that live in them. And we need to embrace playfulness and enjoy the place where we live. That way, we can tackle life with a hop, skip and a jump.

Emmanuel Tsekleves, Senior Lecturer in Design Interactions, Lancaster University

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

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.

Building a better world: can architecture shape behaviour?

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US architect Frank Lloyd Wright, who designed Fallingwater, believed that appropriate architecture would save the US from corruption.
Via Tsuji

Jan Golembiewski, University of Sydney

In 1966, a British planner called Maurice Broady came up with a new term for the architectural lexicon: architectural determinism.

This was to describe the practice of groundlessly asserting that design solutions would change behaviour in a predictable and positive way.

It was a new phrase but the belief system behind it – that buildings shape behaviour – had allowed the heroes of architecture to make all kinds of outlandish claims.

A hopeful history

Leon Battista Alberti, an Italian Renaissance-era architect, claimed in the 1400s that balanced classical forms would compel aggressive invaders to put down their arms and become civilians.

Frank Lloyd Wright, the US architect who designed one of the most famous buildings in America, Fallingwater, similarly believed appropriate architecture would save the US from corruption and turn people back to wholesome endeavours.

British author and thinker Ebenezer Howard believed companies would be more efficient if their employees lived in village-like garden communities.

Swiss-born French architect Le Corbusier made claims about how his Villa Savoye building in France would heal the sick – and when it did just the opposite, he only avoided court because of the commencement of the second world war.

It took a long list of failures over the millennia before postmodern theorists took to critiquing architectural fantasy with malevolent vengeance. The high-point of this trend was the delight shared over the demolition of the famously dangerous and dysfunctional Pruitt-Igoe urban housing complex in St Louis in the US.

It was designed by architects George Hellmuth, Minoru Yamasaki and Joseph Leinweber to provide “community gathering spaces and safe, enclosed play yards.” By the 1960s, however, it was seen as a hotspot for crime and poverty and demolished in the 1970s.

The demolition of Pruitt-Igoe in 1972 fuelled resistance to deterministic thinking.
Wikimedia

The loss of faith in architecture’s power has been regrettable. Architects’ well-meant fantasies once routinely provided clients with hope and sometimes even with results.

Without this promise, the profession was left inept before the better structural knowledge of engineers, the cumulative restrictions imposed by generations of planners, the calculations of project-managers and the expediency of a draughtsman’s CAD (computer-aided design) skills in turning a client’s every whim into reality.

Without fiction, architecture has become a soulless thing. But was determinism dismissed too soon? Is there a role for imagined futures without rationalist restrictions?

Restoring the faith

Just think of some of the ways architecture can manipulate your own experience. In his book, Happy City: Transforming Our Lives Through Urban Design, US author Charles Montgomery points out that some environments predictably affect our moods.

The fact is that environments do affect us, regardless of whether by design or by accident. In 2008, researchers in the UK found that a ten-minute walk down a South London main street increased psychotic symptoms significantly.

In my own research, I find that the healthier a person is, the more a good environment will affect them positively and the less a bad one will affect them negatively. Mentally ill patients show about 65 times more negative reactivity to bad environments than controls and all these reactions translate directly into symptoms.

The same patients have about half the positive responsiveness. That’s fewer smiles, less laughter and a reported drop in feeling the “fun of life”.

But that’s not all. The potential for architecture is richer still. The ease with which architecture can embrace sublime aesthetics makes it great for generating awe.

Psychiatrists have found that awe reduces the prevalence and severity of mood disorders. Could sublime architecture even potentially save lives?

The psychological effects of architecture are difficult to prove, but difficulty doesn’t dilute the value of a building that hits the right notes and creates a sense of awe. Each building type has different functions, and for each there’s an imperative to use the building to help create an optimal mood, desire or sense of coherence, security or meaning.

Awe reduces mood disorders: Gaudi’s Sacrada Familia church in Spain.
Wikimedia

Fortunately, there’s a resurgence of belief that buildings can change behaviour, led by a few architectural journals: World Health Design, Environment Behavior and HERD.

Most of these focus on health care design, because that’s where behavioural changes have life and death consequences.

But nobody dares make any promises. As such, research rarely opens the black box of environmental psychology, leaving findings unexplained and prone to failure.

To give architecture back its mojo, a new interest in how architecture changes us must be fostered. Clients have to learn to trust architects again and research funding bodies have to re-gear to encourage research into how buildings affect our mood, health and behaviours.

Finally, architecture schools have to teach students how they might predict psychological, emotional, healing and functional effects.

The ConversationAll innovation, ultimately, is led by the imagination – even if that means taking risks and sometimes getting it wrong.

Jan Golembiewski, Researcher in Environmental Determinants of Mental Health, University of Sydney

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

If you develop Alzheimer’s, will your children get it too?

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Rebecca Sims, Cardiff University

The most common question I get asked is “Will my child get Alzheimer’s disease?” In my experience, this concern is one of the biggest worries for sufferers, and given the devastating effects of the disease, it is not hard to see why it is a difficult thought to contemplate.

For those people with a familial form of Alzheimer’s disease, the answer is quite straightforward. This type of disease is caused by one or more mutation(s) in one of three genes: the amyloid precursor protein (APP), Presenilin 1 (PSEN1) and Presenilin 2 (PSEN2). All of these genes are involved in the production of the amyloid protein. This protein accumulates to form sticky buildups known as plaques, which are found between the cells of the Alzheimer brain and are characteristic of disease.

Those of us who are concerned that they may be at risk from familial Alzheimer’s disease can get a definitive answer through one of the many genetic tests available. A single copy of the mutated gene inherited from an affected parent will ultimately cause disease, with symptoms likely to be noticed before the age of 65 and typically between 30 and 60 years of age. Anyone concerned that they may suffer from this form of Alzheimer’s should seek a referral to a genetic counsellor.

Fortunately, families with a familial form of disease represent less than 1% of all families afflicted by this debilitating disease. For the remaining Alzheimer’s disease families, the answer as to the inheritance of disease is much less clear, and disease onset is certainly not inevitable.

Influencing disease

A combination of both genetic and environmental factors, such as age and gender, contribute to non-familial (also known as sporadic) disease risk, but how these risk factors interact and how many risk factors are required to cause disease is still unknown.

The genetics of non-familial Alzheimer’s is complex: we know that nearly thirty genes, common in the general population, influence disease risk, with potentially hundreds more involved. Additionally, two genes of low frequency have consistently been identified, with an imminent publication by the International Genomics of Alzheimer’s Project, showing another two rare genes have a relatively large effect on disease risk.

Perhaps most excitingly for researchers, genetics scientists have shown that four biological processes in Alzheimer’s disease – that were not previously thought to play a casual role in disease onset – are actually involved. The first process is the immune response, in particular the actions of immune cells and how these potentially dysfunction, attacking the brain, which results in brain cell death.

The second is the transport of molecules into the cell, suggesting that there is a mechanism for the movement of damaging proteins into the brain. The third process that has a role in the onset of Alzheimer’s is the synthesis and breakdown of fatty molecules. And the fourth is the processing of proteins that alters protein breakdown, movement, activity and interactions – all of which are essential for normal protein function.

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Lifestyle risk

Age is the greatest risk factor for disease, with the likelihood of developing Alzheimer’s roughly doubling every five years over the age of 65. Women also have more chance of developing the disease than men, potentially due to a reduction in female hormones after menopause.

Medical conditions that increase risk for dementia include cardiovascular factors (type 2 diabetes, high blood pressure, cholesterol levels, and obesity), and depression. While lifestyle factors such as physical inactivity, a diet that increases cholesterol, smoking and excessive alcohol intake, have all been shown to influence disease risk.

Even for those with a high number of genetic, environmental and lifestyle risk factors, Alzheimer’s disease is not inevitable. Likewise, individuals with a low number of risk factors for disease are not precluded from developing Alzheimer’s.

Given this lack of certainty and the lack of effective treatments for Alzheimer’s, most experts don’t recommend genetic testing for non-familial disease. This thinking may well evolve in the future, however, when research identifies new risk genes and improves our understanding of the dysfunctional processes in Alzheimer’s disease.

The Conversation

Answering the burning question, whether you will pass Alzheimer’s disease on to your children, is therefore still a near impossibility. But, as early diagnostic techniques improve, and with the prospect of a number of vaccines and therapeutics currently in clinical trials, risk prediction for Alzheimer’s disease may become mainstream and part of a developing precision medicine culture.

Rebecca Sims, Research Fellow, Division of Psychological Medicine and Clinical Neurosciences, Cardiff University

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

Older Adults Are Still Likely Underestimating Cognitive Impairment in Their Families

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News release

 Study Finds Racial Differences in Reporting and Overall Trend of Underreporting Cognitive Impairment

An increasing number of older adults are reporting cognitive impairment in their families over the past two decades, according to a new study led by researchers at NYU Rory Meyers College of Nursing and East Carolina University’s Brody School of Medicine.

The study, which also finds ethnic and racial differences in reporting cognitive impairment, is published in Preventing Chronic Disease, a journal of the Centers for Disease Control and Prevention.

The aging population in the U.S. is growing rapidly, with the number of people age 65 and over in 2010 (40.2 million) projected to more than double by 2050. With the rapid increase in the aging population, the size of the population with cognitive impairment and dementia will continue to accelerate, highlighting the importance of identifying cognitive changes.

“Cognitive impairment may serve as a precursor to future dementia. Early detection of cognitive impairment can facilitate timely medical treatments, appropriate care planning, and prevention efforts,” said Bei Wu, PhD, Dean’s Professor in Global Health and director of Global Health & Aging Research at NYU Meyers, co-director of NYU Aging Incubator, and the study’s senior author.

The study sought to examine the trends of self-reported cognitive impairment among five major racial/ethnic groups from 1997 to 2015 in the United States. The researchers used data from the National Health Interview Survey, including 155,682 individuals age 60 and above in their sample. The large sample included people of a variety of races and ethnicities, including Asian Americans,  Blacks, Hispanics, Native Americans, non-Hispanic Blacks, and non-Hispanic Whites.

Rather than using a screening test or clinical examination to evaluate cognitive impairment, respondents were asked to report if any family member was “limited in anyway because of difficulty remembering or because of experiencing periods of confusion.”

The researchers found an increasing trend in self-reported cognitive impairment: the overall rate increased from 5.7 percent in 1997 to 6.7 percent in 2015 among older adults in the U.S. This finding may suggest that awareness of cognitive impairment, perhaps from heightened public attention to and interest in Alzheimer’s disease, has improved to some extent.

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When looking at each racial/ethnic group, however, the increasing trend was significant only among White respondents. In Whites, the rate of self-reported cognitive impairment increased from 5.2 percent in 1997 to 6.1 percent in 2015. Asian American, Black, Hispanic, and Native American respondents had higher rates of self-reported cognitive impairment than Whites, but these rates did not significantly increase from 1997 to 2015.

Regardless of the overall increasing trend, the rates of self-reported cognitive impairment were still low, which may suggest underreporting. The researchers note that the rates of self-reported cognitive impairment are much lower than the estimated prevalence of cognitive impairment. For adults 65 years and older, the rate of self-reported cognitive impairment was 6.3 percent in 2000 and 7.5 percent in 2012, while the estimated prevalence of cognitive impairment in the same age group was 21.2 percent in 2000 and 18.8 percent in 2012.

These findings underscore the need to further promote awareness of cognitive impairment, especially in minority populations. Different cultures hold different beliefs and perceptions of disease and aging. For instance, research has found that compared to Whites, minorities are less likely to seek treatment for psychiatric symptoms because of lack of access to care or due to stigma.

“Culturally specific health education is needed in individuals, family members, and healthcare providers to improve awareness and knowledge of signs and early symptoms of Alzheimer’s and other dementia,” said Huabin Luo, PhD, of East Carolina University.

In addition to Wu and Luo, Gary Yu of NYU Meyers coauthored the study.