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Dementia: how to make sense of the link with people who struggle to hear over background noise

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‘I can’t hear what anyone is saying.’
Christian Langballe/Unsplash, CC BY-SA

Thomas Littlejohns, University of Oxford

The number of people living with dementia is projected to treble from 50 to 150 million worldwide by 2050. Although there’s currently no cure for the condition, researchers are continuing to learn about how people can reduce their risk through making lifestyle changes (such as exercising more or quitting smoking) and managing health issues (including diabetes and hypertension).

Hearing loss may also be a potential target for preventing dementia. Studies show that hearing impairment is linked to a greater risk of dementia – and that managing hearing problems early may be key to reducing risk.

Our recent paper confirmed these findings, while focusing on an area that has received less attention: people who struggle to pick out speech in noisy environments. The hearing of people in this category is often deemed “normal” in traditional tests, but we were able to show with a large cohort for the first time that they too are at greater risk of going on to develop dementia.

Speech-in-noise impairments

Previous studies looking at the link between hearing impairment and dementia have used a method of hearing assessment known as pure-tone audiometry to measure participants’ hearing. This is usually the gold standard to testing a person’s hearing, and works by measuring a person’s ability to detect sounds – specifically tones – in a quiet environment.

However, many people whose test shows that they have “normal” hearing can still have issues hearing when different assessment methods are used. This includes those who struggle to pick out speech in noisy places, which is known as speech-in-noise hearing.

Speech-in-noise hearing is akin to the kind of hearing we do in everyday life. To find out whether speech-in-noise hearing impairment was similarly linked with increased dementia risk, we looked at data from a total of 82,039 people aged 60 or over.

Participants’ speech-in-noise hearing was measured using what’s known as a digits triplet test. This involved asking participants to identify three spoken numbers presented in varying levels of background noise. Based on their performance, we then grouped participants into three categories: “normal”, “insufficient” and “poor”.

Participants were followed up over 11 years to see who developed dementia. A total of 1,285 people from the 82,039 total received a dementia diagnosis over that period. We found those with insufficient and poor speech-in-noise hearing had a 61% and 91% greater risk of developing dementia compared to those with normal speech-in-noise hearing. The dementia risk of those with poor speech-in-noise hearing was virtually identical to what previous studies found about people with hearing impairments that are picked up by pure-tone audiometry.

Liverpool Street Station in London as crowds of people rush through.
Struggling to hear an announcement in a busy place is one sign of poor speech-in-noise hearing.
Keith Gentry/ Shutterstock

Finding the cause

There are several suggestions for why there is a link between hearing impairment and dementia. One possibility is that impaired hearing increases the likelihood of other risk factors for dementia, such as social isolation or depression. But we found little evidence to support this, with depressive symptoms and social isolation only explaining a small percentage (less than 7%) of the association between speech-in-noise hearing impairment and dementia.

It’s also possible that our findings (and those from other studies) might be detecting an association between dementia and hearing impairment when in fact both are caused by something else altogether. While we took a range of factors into account in our analyses – such as age, education level and socioeconomic status – we can’t rule out the possibility that other factors might be involved that we didn’t look at.

The other possibility is that dementia causes hearing impairment. This might seem an unusual explanation, as in our study dementia was diagnosed after hearing was measured. But the pathology of dementia typically develops years before a person receives a diagnosis. It often occurs before memory problems and other cognitive issues become apparent. This “pre-clinical” pathology results in other symptoms – such as weight loss – and could potentially cause issues with hearing.

We explored this possibility in two ways. The first was to see whether hearing impairment was associated with dementia diagnosed a long time after hearing was measured. This is because pre-clinical symptoms are more likely to manifest close to a diagnosis.

When looking at dementia diagnosed nine to 11 years after the hearing test, insufficient and poor speech-in-noise hearing was associated with a 54% and 85% increased risk of dementia. This is similar to the main findings of our study. You would have expected this group to have a lower correlation with hearing problems if pre-clinical dementia was causing them.

Our second approach was to only include people who described their health as “good”, “very good” or “excellent” at the time hearing was measured. This is because worse health might reflect the early pre-clinical symptoms of dementia. People with worse health are also probably more likely to have hearing problems.

Again, the number of people in this group who went on to develop dementia after being identified with a hearing impairment was similar to those of our initial findings. Had dementia been causing the impairment, you might have expected a disproportionately high number of those who went on to develop dementia to have been the ones already reporting generally poor health.

In both cases, this is tentative evidence that dementia might not be causing hearing impairment. But even so, some early pre-clinical symptoms of dementia can manifest decades before a diagnosis. Studies which diagnose dementia 15 or even 20 years later are necessary to disentangle these complex relationships further.

While our findings are preliminary, they add to the growing body of evidence that hearing impairment is a promising target for preventing dementia. In fact, it’s thought that if hearing impairment is indeed a cause of dementia, addressing it could prevent 8% of dementia cases in instances where dementia is not otherwise evident. This statistic is based on pure-tone audiometry hearing – so it could very well be higher when considering issues with speech-in-noise hearing.The Conversation

Thomas Littlejohns, Senior Epidemiologist, University of Oxford

This article is republished from The Conversation under a Creative Commons license. Read the original article.

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Posted in Caregiving, International Campaigns, Research & Best Practice, The Built Environment

Nursing homes for all: why aged care needs to reflect multicultural Australia

Do nursing home staff know and respect your cultural background or language? Here’s why that’s important.
from www.shutterstock.com

Helen Rawson, Deakin University

This week, the aged care royal commission looks at diversity in aged care, an issue becoming increasingly relevant to both residents and the staff who care for them.

Diversity includes gender, sexual orientation, religion and social background. The issue is important because if we aim to offer older people and families choice and control in aged care, we must meet the diverse needs of all older people.




Read more:
Our culture affects the way we look after ourselves. It should shape the health care we receive, too


Australia’s rich diversity is reflected in its older population. In 2016, more than one-third (37%) of Australians aged 65 and over were born overseas and one-fifth (20%) were born in a non-English speaking country.

These figures have increased continually since 1981, when one-quarter (25%) of older people were born overseas.

Diversity within diversity: culture and language

Culture is important for every person. It indicates a way of life based on customs, beliefs, language and experiences shared with family and a wider community or group.

According to the Federation of Ethnic Communities’ Councils of Australia, many people from culturally and linguistically diverse backgrounds don’t want to move to a nursing home. This is for a number of reasons.

They may not want to be away from family and community, they might speak a different language to staff and other residents, and homes may not understand or meet their individual cultural needs.

Our previous research showed living in an aged care facility could make some older people feel disempowered. Language and cultural diversity can further add to that disempowerment. For the older people we studied, communication, companionship, and staff knowing them as individuals was very important.




Read more:
Between health and faith: managing type 2 diabetes during Ramadan


Language is particularly important for older people’s physical health and well-being. Many culturally and linguistically diverse older people say they speak English well. However, with age and cognitive decline, they may lose the ability to communicate in English and revert to their first language.

And as more than half of nursing home residents have dementia, with the associated deterioration in language and cognition, communication can be more difficult still.

Appreciating someone’s cultural background can help residents make friends.
from www.shutterstock.com

Being aware of their peer’s culture and language can help residents build relationships with each other, family and staff.

Different cultural expectations and language barriers can create misunderstanding and resident and family dissatisfaction. This can affect residents’ care and quality of life.




Read more:
How to check if your mum or dad’s nursing home is up to scratch


How can we support appropriate care?

Aged care needs to be responsive, inclusive and sensitive to a person’s culture, language and spiritual needs. So it is important for nursing homes to understand those needs.

For those who are culturally diverse, government-funded support and culturally specific nursing homes can help. These include services for Greek, Italian, Dutch, Jewish and Chinese older people, reflecting post-war migration.

However, organisations like these cannot meet everyone’s needs. So all residents need care that respects cultural and social differences, works with older people and family, and supports choice.




Read more:
What do Aboriginal Australians want from their aged care system? Community connection is number one


What might appropriate care look like?

Staff need ongoing cultural competence training to deliver appropriate and supportive care.

Staff cannot know everything about the many cultural and language groups in Australia. They can, however, practise in way that is culturally appropriate, by:

  • never making assumptions about someone’s culture, heritage, language or individual needs. No two people are the same, even if they are from the same culture and language background

  • talking to the resident with an interpreter, if needed

  • learning what is important to the resident. For example, staff could ask family members or close friends to bring in photos or mementos important to the older person

  • talking with family of residents who are unable to communicate in English to make a list of key words or phrases for staff. This could include how to say “hello”, or how to ask “are you comfortable?”, or “are you in pain?”

  • making sure the older person isn’t isolated in the nursing home. This could involve working with the local community of the person’s culture, and asking for volunteers who could come and visit the older person.

Family members can be a huge help to staff in understanding the resident’s language, culture and preferences.
Nadya Chetah/Shutterstock

Appropriate and respectful aged care is a human right

Culture and language diversity in aged care is a fundamental human right. Embedding diversity in all aspects of aged care is also recognised by government, and in how the quality of aged care is assessed.

New aged care quality standards, which came into effect this July, include being treated with dignity and respect, with identity, culture and diversity valued, and all residents able to make informed choices about the care and services they receive.




Read more:
Nearly 1 in 4 of us aren’t native English speakers. In a health-care setting, interpreters are essential


If the outcomes of this royal commission are to benefit Australians now and especially in the future, older people from culturally and linguistically diverse backgrounds must not be an afterthought in the aged care discussion. They must be part of the planning.The Conversation

Helen Rawson, Senior Research Fellow, Deakin University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Posted in Caregiving

Tiny and alternate houses can help ease Australia’s rental affordability crisis

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Heather Shearer, Griffith University and Paul Burton, Griffith University

Rental housing in Australia is less affordable than ever before. It is no exaggeration to call the situation a crisis, with vacancy rates at record lows.

But there are some relatively simple, easy-to-implement and cost-effective things that can be done to ease rental affordability pressures.

These include relaxing planning restrictions on small and non-traditional houses, allowing granny flats to be rented to anyone, permitting property owners to let space to tiny house dwellers, and possibly even subsidising the building of granny flats or modification of houses for dual occupancy.

‘Dependant’ persons only

The degree to which local councils permit very small dwellings depends on factors such as dwelling type, lot characteristics, planning scheme zoning and overlays, and state regulations.

Subject to these constraints, granny flats are generally legal in Australia, though states such as Queensland and Victoria restrict who can live in them.

In Queensland, most councils limit occupancy to members of the same household, defined as a group who “live together on a long-term basis and make common provision for food or other essentials for living”.

In Victoria, granny flats can only “provide accommodation for a person who is dependant on a resident of the existing dwelling” (and are hence called Dependant Person’s Units).

While these laws are sometimes ignored, they limit the potential for this affordable housing option for other individuals who struggle in the housing market. Extra council regulations and fees also make building a granny flat complicated, time-consuming and expensive, particularly if they incur infrastructure charges.

Desperately seeking parking space

Tiny houses, especially those on wheels, are typically not approved for permanent residence. Councils consider them caravans, with periods of permitted occupancy ranging from zero to about three months.

Some councils will tolerate them but, if receiving a complaint, can demand the tiny house be removed at short notice.

This can cause extreme distress. Some tiny house owners report living in constant fear of being moved on. In recent years we’ve seen increasing numbers of posts on tiny house social media pages pleading for “parking space”.

Because of these barriers, most tiny houses in Australia aren’t in urban areas, where demand for rental properties is highest, but hidden “under the radar” in more rural areas.

Tiny house in a rural setting.
Planning laws have made it difficult for tiny houses in urban areas. Shutterstock, CC BY

These areas typically have poorer access to public transport, employment, education and health services. If unknown to authorities, tiny house dwellers may also be at higher risk from natural disasters such as bushfires and floods.



Benefits from easing restrictions

Removing some restrictions on letting granny flats and permitting and regulating longer-term occupancy for tiny house dwellers can help ease these rental affordability challenges.

There are other benefits too. For local councils trying to limit unsustainable, low-density expansion on their fringes, these changes enable a relatively gentle and unobtrusive form of densification in places where resistance to change is common.

It could also support more ageing in place (enabling the elderly to downsize while staying in their neighbourhood), reduce development pressures on the natural environment, and provide valuable income both for home owners and give local councils a new stream of rate income.

Allowing property owners to let space to a tiny-house dweller (with appropriate regulations on aesthetic appearance, safety features and environmental impacts) could be a cost-effective and rapid way to increase rental supply for some demographics. Single women over 50, for example, are at high risk of homelessness and also the demographic most interested in tiny house living.

This crisis needs innovative responses

We have seen that, when disasters strike, governments can introduce innovative responses to local housing crises.

In response to the massive floods of February and March, the New South Wales government’s Temporary Accommodation Policy changed the rules to allow a moveable dwelling or manufactured home to be placed in a disaster-affected area for up to two years, or longer subject to council approval.

Allowing tiny houses for a trial period of, say, two years could provide a valuable pilot project, and perhaps alleviate the concerns of some local ratepayers. In nine years of research into the tiny house movement in Australia, we have found some councils are willing to consider permitting tiny houses – but only if another council does it first.

A tiny house for sale at the Sydney Tiny House Festival, March 2020.
A tiny house for sale at the Sydney Tiny House Festival, March 2020. Heather Shearer, Author provided

A longer-term solution is to encourage the building of more granny flats as part of a program of moderate densification, as is happening in Auckland, New Zealand.

Rather than subsidising expensive renovations of existing homes – as the Morrison government did with its HomeBuilder grants scheme – federal, state and territory governments could offer incentives to divide or extend homes in well-designed and sustainably constructed ways to enable dual living.

While not as visibly dramatic as floods and bushfires, the crisis of housing affordability deserves equally imaginative policy responses. After all, adequate housing is enshrined in the UN’s Universal Declaration of Human Rights.

The crisis is complex and multifaceted. There are no easy solutions to address it in its entirety, and for every demographic. Tiny houses and granny flats are not suitable for all households. But business as usual is no solution.

We need a willingness to experiment with and learn from innovative and even disruptive approaches.

Heather Shearer, Research Fellow, Cities Research Institute, Griffith University and Paul Burton, Professor of Urban Management & Planning and Director, Cities Research Institute, Griffith University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Posted in Caregiving

How older people are mastering technology to stay connected after lockdown

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Carolyn Wilson-Nash, University of Stirling and Julie Tinson, University of Stirling

It’s a well-worn stereotype: the image of an elderly person fiddling with technology that leaves them completely bamboozled. The media often depict older people struggling to use or manage digital technology. While this is often designed to be humorous, it can undermine them as users of technology. And that’s a problem if it turns older people off from trying to engage with digital devices, as it can affect their wellbeing.

Older adults are already at a digital disadvantage: 18% of over-65s do not have internet access. Propelled by enforced isolation, older people increasingly turned to technology during the pandemic, but not all were able to connect or communicate with friends and family via the internet.

Of course some older people have less experience of digital technology than others, and unsurprisingly describe mixed emotions regarding the use of everyday devices such as smartphones, laptops, e-readers and tablets. They also report not having much confidence when it comes to using them. Lack of control, a sense of being overwhelmed, and poor product design can lead to feelings of being incompetent, alone and even trapped.

Yet for those who persevere, the rewards can be plentiful: completing tasks more easily, communicating more effectively, increased independence and a sense of achievement. These things are important if this growing part of the population is to experience ageing in a more positive and empowering way.

Through our research we wanted to examine these mixed emotions that older people have about using technology, and how they develop ways to combat the challenges they face. While digital technology has been shown to alleviate pressure on health and social care, until now there’s been a limited understanding of how using technology influences the way older adults live.

Attitudes towards technology

While many see digital technology as a challenge to be conquered, there are different ways of overcoming or confronting the obstacles. Some may view the challenge as a personal goal, using instruction manuals or simply trial and error to prevail over software updates, unwanted viruses or junk mail.

Others view digital technology as a collective endeavour, asking friends and family for help. Not only is this the most successful strategy, it also fosters important interaction with others. For example, during the pandemic many younger people acted as IT support for older friends and relatives.

Not all elderly people have this kind of network, but arguably they can benefit most from greater use of the internet to feel connected and keep loneliness at bay. In these situations, there are useful schemes run by charities such as Age UK, where digital champions can help older adults master technology.

Adopting strategies

Understandably frustrations emerge when learning a new skill, but some older people have shown how they overcome their exasperation by developing a relationship with their devices. Naming their tablet or humanising their phone helps to bond older people to technology.

In our study different devices were often referred to as having a personality, gender, or even a mind of their own. This strategy brings a little levity to a situation that could otherwise be stressful.

Once these people become more used to digital technology, familiarity can encourage continued use. With a new device, software and apps they know and understand can be downloaded so that it feels less alien. Similarly, if a touchscreen is problematic, some older people might decide to use a keyboard and mouse instead.

An older black women on her laptop smiling and looking happy.
Being able to use technology keeps older people connected and reduce feelings of isolation.
M2020/Shutterstock

Breeding confidence

Using technology at any age can have its pros and its cons, but our research reveals that older adults can offer a unique perspective. Using lifelong wisdom, they can take a step back and acknowledge that technology has its faults. If things go wrong, their judgement and experience is useful in helping to understand that the key to using technology is persistence. One participant, Christopher, 83, said:

There’s one sure thing: life will come to an end, and technology will always go wrong. My son’s partner sends me texts from their holiday in Tunis. When I try to reply I keep getting ‘no service’ and my message is refused … [but] I know they will be worried if they don’t get a reply. When I was a kid, Tunis was a distant desert war zone, with cinema newsreels a week later … and here’s me now, whingeing about lack of instant contact.

These findings are significant for technology development, marketing and customer services. Designing technology for older people should be based on their experiences and offer continuity. Digital devices need to include familiar commands, buttons, screens, and add-ons to previous models. This will enhance the ability to get to grips with updates and developments. And in turn this will help foster social connections as well as boost independence and confidence.

Stereotyping of older people also needs to stop. Experience and perspective should be acknowledged, respected and reflected in marketing campaigns. Messaging should underscore the potential benefits of mastering technology, emphasising the importance of being connected and socially involved to a person’s independence.

Finally, customer service should be easily accessible and well versed in issues older people face to provide the necessary support, building on schemes offered by Age UK’s digital champions. Clearly there is a crucial role for friends, family, and communities to ensure that older people remain socially active, engaged and connected through technology. Their wellbeing may depend on it.The Conversation

Carolyn Wilson-Nash, Lecturer, Marketing and Retail, Stirling Management School, University of Stirling and Julie Tinson, Professor of Marketing, University of Stirling

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Posted in Caregiving

We studied how to reduce airborne COVID spread in hospitals. Here’s what we learnt

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Kirsty Buising, The Peter Doherty Institute for Infection and Immunity; Caroline Marshall, The University of Melbourne; Forbes McGain, The University of Melbourne; Jason Monty, The University of Melbourne; Louis Irving, The University of Melbourne; Marion Kainer, Vanderbilt University, and Robyn Schofield, The University of Melbourne

Melbourne’s second wave of COVID-19 last year, which led to a lockdown lasting more than 100 days, provided us with many lessons about controlling transmission. Some of these are pertinent as New South Wales endures its ongoing lockdown.

One feature of Melbourne’s second wave was a disproportionate impact on health-care workers, patients in hospital, and residents in aged-care homes. In response to this, a team of Melbourne-based infectious clinicians, engineers and aerosol scientists came together to learn from each other about how to mitigate the risk of airborne COVID-19 transmission in health care.

We are some members of that team. As we hear about COVID spreading in Sydney hospitals during the current outbreak, we want to share what we learnt about how to potentially minimise airborne COVID-19 spread in the hope it’s helpful to our colleagues.

Importantly, much has improved over the course of the pandemic. Most health-care staff and some of our patients (even if not as many as we would like) are vaccinated against COVID-19, reducing the likelihood of severe illness and death. Appropriate personal protective equipment (PPE) is generally available, including fit-tested N95 masks, and practices such as physical distancing and use of tele-health have been widely adopted.

But aerosol transmission of COVID-19 remains a very real and ongoing problem.


Read more: Australia must get serious about airborne infection transmission. Here’s what we need to do


We’ve read recent expert commentaries about dealing with COVID-19 that mention paying attention to indoor ventilation. But rarely do these specify what exactly can and should be done in our existing hospital buildings.

The heating, ventilation and air conditioning systems in hospitals, like most public indoor spaces, are built for comfort and energy efficiency, not for infection control (aside from purpose-built isolation areas).

Clearly, we cannot rebuild all our hospital ventilation systems to cope with the current outbreak.

However, there are tangible things that can be done now and in future.

Our recommendations

We recommend hospitals prioritise the use of negative pressure rooms for COVID-19 infected patients where available. Negative pressure rooms are built specifically for patients with highly infectious diseases. We already use them when caring for hospitalised people with tuberculosis, measles and chickenpox.

These rooms usually have an “anteroom” with a door either side before the patient room. The air pressure is lower in the anteroom than the corridor, and then lower again in the patient room compared to the anteroom. This means potentially contaminated air doesn’t escape outside the patient room when the door is opened.

Images showing air flows in positive and negative pressure rooms
Negative pressure rooms ensure potentially contaminated air doesn’t escape into the corridor. Shutterstock

However, these rooms are usually in short supply even in larger hospitals, and may not exist in smaller or rural hospitals.

If negative pressure rooms aren’t available, then where possible, COVID-19 patients should be managed in single rooms with doors that close.

Preferably, these should be rooms with a high number of “air exchanges per hour”. This is a measure of the refreshing of air in the room. Six air exchanges per hour has been suggested at a minimum for hospital rooms, but preferably more.

Hospitals need to be aware the air in normal rooms can travel outside into corridors. Some rooms may be positively pressured without being labelled as such, so we recommend having them tested.

Two small air cleaners can clear 99% of infectious aerosols

If patients with COVID-19 are being managed outside negative pressure rooms, then we recommend hospitals consider using portable air cleaners with HEPA filters.

We published a world-first study in June into airflow and the movement of aerosols in a COVID-19 ward, giving us a real insight into how the virus might be transmitted.

We found portable air cleaners are highly effective in increasing the clearance of particles from the air in clinical spaces and reducing their spread to other areas.

Two small domestic air cleaners in a single patient room of a hospital ward could clear 99% of potentially infectious aerosols within 5.5 minutes.

These air cleaners are relatively cheap and commercially available. We believe they could help reduce the risk of health-care workers and other patients acquiring COVID-19 in health care.

We are currently using them at the Royal Melbourne Hospital and Western Health.


Read more: Poor ventilation may be adding to nursing homes’ COVID-19 risks


Innovations such as personal ventilation hoods can also be extremely useful. Western Health’s intensive care unit, which managed large numbers of patients in Melbourne in 2020, used these hoods to filter air close to COVID-19 positive patients and help protect staff.

It’s also important hospitals perform ventilation assessments of wards to be aware of the pathways of airflow through spaces to help inform where to position patients and staff.

We found minimising the number of infected patients in a given physical space was important as we think this helped to reduce the density of aerosols. When patient numbers are high, hospitals should try to avoid caring for more than one COVID-19 positive patient in a room, if possible, which may mean closing beds.

Clearly, if new COVID-19 case numbers climb, this becomes difficult, and enlisting the help of additional hospitals with suitable facilities to “share the load” will be necessary.

New hospitals must focus on ventilation

We need to focus on practical strategies we can implement right now to retro-fit health-care settings to improve safety for staff and patients.

But we must also plan for the future.

In designing new hospitals, it’s critical to:

  • keep ventilation front of mind
  • build enough negative pressure rooms and single patient rooms
  • add air cleaning and air monitoring to the building operations toolbox.

We will achieve this by designing facilities together with staff.

Vaccinations will help control this current pandemic. But we’ve learnt so much about managing this virus in such a short time. Let’s apply what we’ve learnt about aerosol transmission to make practical changes to improve safety now and into the future.


The authors would like to thank Ashley Stevens, hospital engineer at Royal Melbourne Hospital, for contributing to this article and the research.

Kirsty Buising, Professor, The Peter Doherty Institute for Infection and Immunity; Caroline Marshall, Associate Professor, Infectious Diseases, The University of Melbourne; Forbes McGain, Associate Professor, The University of Melbourne; Jason Monty, Professor and Head of Department, Fluid Mechanics Group, Mechanical Engineering, The University of Melbourne; Louis Irving, Associate Professor of Physiology, The University of Melbourne; Marion Kainer, Adjunct Assistant Professor, Health Policy, Vanderbilt University, and Robyn Schofield, Associate Professor and Associate Dean (Environment and Sustainability), The University of Melbourne

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Posted in Caregiving

How communities can fight the stigma that isolates people with dementia

Isolation and segregation create and reinforce another kind of barrier to those with dementia: stigma. (Shutterstock)

Sienna Caspar, University of Lethbridge

Keeping people with dementia separated and secured is a common practice, based on the reasonable idea of safety first for the vulnerable. During this pandemic, however, contact with those in care homes, many of whom have dementia, was cut off at great cost to residents’ mental and physical health.

Isolation and segregation create and reinforce another kind of barrier to those with dementia: that of stigma, which can rob people of quality of life, personal agency and the dignity of risk the rest of the population expects as a birthright.

Research shows that experiencing stigma — defined as a mark of disgrace and humiliation — adds to feelings of social isolation, depression and abandonment among those with dementia. This stigma exists worldwide, and trying to educate people at remove from those with dementia has not proved effective at reducing it.

One approach that might help diminish stigma is to build communities that are more welcoming and accepting to people with dementia.

Segregation is not the answer

The shame and fear associated with this stigma is so stubborn that people experiencing dementia still act on it, to their own detriment. They wait too long to be diagnosed, losing valuable time, treatment options and social support. Once labelled, they find that old friends, people in their community and even family members drift away. Caregivers also become more isolated.

Segregation for the sake of safety is not the answer to treating people with dementia — now numbering 50 million worldwide — as fully human.

During my years as a certified therapeutic recreation specialist in North American care homes, I saw how segregation led to stigma and blocked help for people with dementia. This is why now, as a professor in therapeutic recreation, I am engaging in research that focuses on a growing “dementia-friendly” movement.

A concerned older man and a distraught older woman
The stigma associated with dementia is so deep that it may prevent people with early dementia from seeking help. (Shutterstock)

This movement seeks to develop support systems for people with memory loss, recognizing them as equals, celebrating their contributions and enabling them to live with purpose inside welcoming communities.

I teach my students that personal relationships are at the core of any therapy that aims to help individuals thrive as they age. To that end, I am exploring the possibilities for contact theory, a promising, practical approach to combatting prejudice, to see if it can be applied to the stigma of dementia.

Contact theory posits that personal contact enables and supports relationships between majority and minority group members, and is better at reducing stigma than interventions that focus on education. Researchers have found that developing such relationships can reduce prejudice based on mental illness, race, gender and age.

The ultimate goal, if contact theory works as it has elsewhere, is to extend the concept of age-friendly societies, as described by the World Health Organization (WHO), to include dementia-friendly societies.

‘Dementia-friendly’ communities

The WHO defines an age-friendly city as one that “encourages active aging by optimizing opportunities for health, participation and security in order to enhance quality of life as people age.” However, a specific call to address stigma around aging and dementia — a double-whammy of discrimination — is not explicit in the WHO’s approach.

Around the world, the WHO promotes and evaluates such things as walking programs, accessible transit and recreation facilities, housing options, health services and many senior-friendly activities to ease the potential hardships of aging and to promote inclusion. Access to these kinds of services should not disappear when memory does.

An older woman playing cards with a younger woman
University students living in long-term care facilities and spending time each week with their older neighbours in exchange for rent is an example of integrating and supporting people with dementia. (Shutterstock)

A dementia-friendly community would adapt physical and social aspects of an environment to ensure well-being and continuity of life for everyone. This would explicitly address stigma within the WHO’s current framework. Related activities could help move communities worldwide from segregation to tolerance to true inclusion of all people as we age.

This is where the tenets of contact theory may prove beneficial. Recent initiatives show that finding ways to bring people with and without dementia together in support of the same goal can counteract the stigma of dementia. This type of activity helps move the “dementia friendly” concept from rhetoric to reality.

Examples include:

These initiatives result in people with dementia feeling included, valued and respected, and the creation of meaningful relationships for all.

Contact theory is not a perfect solution, and widening the world of people with dementia is not risk-free. For example, there is a risk of people with dementia getting lost or going missing.

Despite these limitations, there is reason to feel optimistic that aging-friendly programs can be applied to dementia. I believe that if more people without memory loss interact and create friendships with those who have it, stigma will decrease. Adopting attitudes of inclusion based on personal experiences could result in friendlier, more equitable communities.

People with dementia cannot help forgetting. So it is up to us to remember that they are important members of society who deserve lives as connected and meaningful as our own.

Sienna Caspar, Associate Professor, Faculty of Health Sciences, University of Lethbridge

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Posted in The Built Environment

Design makes a place a prison or a home. Turning ‘human-centred’ vision for aged care into reality

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Jan Golembiewski, University of Technology Sydney

The Royal Commission into Aged Care left organisations that provide housing for aged care wondering how they will put its recommendations into effect. Most of these recommendations relate to the models of care and levels of staffing in homes. Put simply, in the architectural rabbit warrens that typify aged-care facilities, there can never be enough staff to manage every nook.

Models of care are also difficult to change when the architecture is obsolete. Yet these difficulties aren’t detailed in the report. It barely mentions architecture. Only two of the 148 recommendations relate specifically to architecture, numbers 45 and 46: to improve the design of residential care accommodation; and to provide “small household” models of accommodation.

But don’t be mistaken. Architecture has a profound impact on how we live our lives, work and respond socially.


Read more: 4 key takeaways from the aged care royal commission’s final report


If architects are able to work with some basic design rules – to design to a vision, with simplicity and a non-institutional design language – architecture can play a role in implementing the bulk of the recommendations. But, if the importance of design is neglected, obsolete architectural models will undermine the best efforts to reform the models of care.

We can design to remove restraint

Architecture is a critical element of “embedding a human rights-based and human-centred approach to care”, the focus of chapter 3 of the royal commission’s report. To understand the relationship between architecture and human rights, consider how human rights are taken away: look at prisons, detention centres, mental health facilities and even the residences where we care for our elderly citizens. Invariably, it’s architecture that stifles the freedom of movement, the dignity, the freedom of association, choice and other rights.


Read more: The bad buildings scream – lessons from Don Dale and other failed institutions


The commission estimates architectural solutions to seclusion and other forms of physical restraint are used on 25-50% of all residents of high-care residences. These restraints can look innocuous – including “seating residents in chairs with deep seats, or rockers and recliners, that the resident cannot stand up from”. But for residents who can’t get up on their own, deep seats restrict their freedom of movement and ability to make their own choices about as much as handcuffs do.

old women being helped to get out of a chair
When a person can’t get up from a seat unaided, it becomes a form of restraint. Shutterstock

The forms of restraint (including in high-care aged-care residences) are increasingly disguised, but a locked door remains impenetrable even if it’s made of clear glass. Along with fences and high walls, such features are designed to keep some people in and others out.


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Or we can design for quality of life

If people fail to see how the design of a prison is the primary instrument for imprisonment, then it’s also hard to comprehend just how much good architecture improves people’s circumstances and well-being. But a well-designed aged-care building is replete with wholesome invitations to do such things as explore gardens without putting residents at undue risk.

In turn, spending time outdoors helps prevent “sundowning” – people with dementia may become more confused, restless or insecure late in the afternoon or early evening. It also improves the resident’s experience (personal well-being and satisfaction). Recent unpublished data (in review) shows time outdoors even protects against viral flu-like infections.

And that’s just one example of the benefits of good design. All good architectural choices have similarly positive effects.

3 principles for human-centred design in aged care

Principle 1: projects are driven by a vision that maintains and enables human dignity, even for people with cognitive impairment.

A vision includes a single, well-articulated concept that cannot be dismissed or ignored. The vision creates a hierarchy in which important things are valued more than anything else. A vision that makes human dignity a priority ensures other functional or pragmatic concerns do not lead to human rights being deprioritised.

A good vision isn’t just words or intentions. It involves concrete decisions that are armed with bravery and honesty. Bravery because a good vision always aspires beyond known benchmarks and guidelines. Honesty, because a good vision isn’t shy about speaking the truth.

The diagram below shows an example of a vision in which high-care aged-care residences were to be incorporated into a new precinct for the University of Wollongong. The vision prioritised human centredness – a human-centred workplace, a student-centred learning environment, patient-centred aged-care residences and a person-centred environment overall.

The above vision led to this conceptual diagram.

The conceptual diagram was developed as a masterplan.

In this concept, the educational, residential (non-aged-care) and health facilities make natural walls around a shared village. Car-free streets, cafes, shops, parklands and a distributed residential aged-care facility create a pleasant and safe environment for everybody. The exterior buildings are accessible from both sides for students and staff, but not for high-care residents unless they are accompanied.


Read more: Aged care isn’t working, but we can create neighbourhoods to support healthy ageing in place


Principle 2: keep it simple.

As cognitive abilities decline, this reduces people’s capacity to deal with complexity. So keep design simple, with destinations that are visible and clear.

Think about turning all bedrooms inwards to provide immediate access to common spaces, activities and gardens. The reception, all offices and commercial facilities can face outwards, and be invisible to residents.

Simplifying the layout also aids staff. Hidden spaces and doors to unsafe places cause anxiety for residents and staff alike, adding to the staffing burden.

Simple design doesn’t mean plain. It means keeping plans simple – especially for the residents, who have all they might need (and all they want) immediately visible. All no-go areas are hidden.

Principle 3: Residential means non-institutional.

Much as they assist with routines of care, residences are residences. They are ruined by staff stations and institutional touches like vinyl flooring, strip lighting and furniture lined up against the walls.

Residents’ bedrooms must be customisable – meaning people should be able to hang their own art, listen to their own music, and have their own furniture and belongings. After all, these rooms are where people live. And how can people feel at home, unless they are allowed to feel at home with their surroundings?

The left image shows a relatively typical scene in an Australian residential-care facility. The details are institutional – the windows, the lighting, the residents lined up along a wall. The opposite (right) is a residential milieu. Which one would you choose?

Jan Golembiewski, Researcher, University of Technology Sydney

This article is republished from The Conversation under a Creative Commons license. Read the original article.