World’s largest dementia study reveals 2/3 of people think dementia is a normal part of ageing

News Release
September 2019| Alzheimer’s Disease International (ADI): World’s largest dementia study reveals two thirds of people think dementia is a normal part of ageing, rather than a medical condition

95 per cent of participants think they could develop dementia in their lifetime – a survey of 70,000 people across 155 countries reveals

2 in 3 people still think that dementia is a normal part of ageing
62 per cent of healthcare practitioners still think it is a normal part of ageing
Over 50% of healthcare practitioners agree that their own colleagues ignore people living with dementia and 33% of people thought that if they had dementia, they would not be listened to by health professionals
1 in 5 people attribute dementia to bad luck, almost 10 per cent to God’s will and 2 per cent to witchcraft
Every 3 seconds someone in the world develops dementia
London, Friday 20 September – Results from the world’s largest survey on attitudes to dementia reveals a startling lack of global knowledge around dementia, with two thirds of people still thinking the disease is a normal part of ageing rather than a neurodegenerative disorder.

Alzheimer’s Disease International (ADI), the international federation of 100 Alzheimer associations and federations around the world, ahead of World Alzheimer’s Day tomorrow (21 September) with the release of the World Alzheimer Report 2019: Attitudes to dementia. The report reveals the results of the largest attitudes to dementia survey ever undertaken, with responses from almost 70,000 people across 155 countries and territories. Analysis of the study was carried out by the London School of Economics and Political Science (LSE).

The report reveals that stigma around dementia is preventing people from seeking the information, advice, support and medical help that could dramatically improve their length and quality of life for what is one of the world’s fastest growing causes of death globally. The number of people living with dementia is forecast to more than triple, from over 50 million currently, to 152 million by 2050.

“Stigma is the single biggest barrier limiting people around the world from dramatically improving how they live with dementia,” says ADI’s Chief Executive Paola Barbarino. “The consequences of stigma are therefore incredibly important to understand. At the individual level, stigma can undermine life goals and reduce participation in meaningful life activities as well as lower levels of well-being and quality of life. At the societal level, structural stigma and discrimination can influence levels of funding allocated to care and support.”

The report reveals astonishing attitudes towards dementia. Survey respondents included people living with dementia, carers, healthcare practitioners and the general public. A major cause for concern from the report, is the number of people across the world who think that dementia is a natural part of the ageing process.

Forty-eight per cent of respondents believe a person with dementia’s memory will never improve, even with medical support, while one in four people think there is nothing we can do to prevent dementia. These are major barriers to people accessing help, advice and support.

The report reveals that dementia stigma is similar to stigma often associated with mental health, focussed on age and is accentuated by a lack of available medical treatments. In reality, many forms of support exist around the world. Talking and planning can help people to live well with dementia for as long as possible.

“Currently, there is very little information about how stigma manifests in relation to people with dementia and how this may vary around the world,” Barbarino continues. “This detailed survey and report now give us a baseline of information for dementia-related stigma at a global, regional and national level. We’re hopeful these findings can kick start positive reform and change globally.”

The report finds that over 50% of healthcare practitioners agree that their own colleagues ignore people living with dementia and 33% of people thought that if they had dementia, they would not be listened to by health professionals.

Interestingly, 95 per cent of participants think they could develop dementia in their lifetime and over two thirds of people (69.3 per cent) would take a genetic profiling test to learn whether they are at risk of dementia (even though there is currently no disease-modifying treatment). However, two thirds of people still think dementia is a natural part of ageing. The fear of developing dementia is high globally, but the true understanding of the disease is low. This is worrying, as Alzheimer’s disease and other dementias are the 5th leading cause of death globally.

Sara Evans-Lacko, Associate Professorial Research Fellow at the Care Policy and Evaluation Centre, LSE, said: “Whereas most stigma studies look at public knowledge and or attitudes, this is the first study to look at the behavioural element – the data collected highlight actual experiences of people. For LSE it has been enriching to be part of the first attempt to create a baseline on dementia attitudes. We are delighted to have been able to bring our rigour and analytical expertise to the table and are conscious of the tremendous importance of this exercise at a global level.”

ADI launched its global campaign ‘Let’s Talk About Dementia’, on 1 September 2019 to mark the beginning of the month of awareness. The campaign is based on the understanding that talking about dementia helps tackle the stigma, normalises language and encourages people to find out more, seek help, advice and support.

Dementia blogger and journalist Pippa Kelly says it is vitally important that as a society we have more conversations about dementia to create better understanding. “Stigma stems from fear. Fear breeds silence, which in turn perpetuates ignorance and misunderstanding,” Kelly says.

Every 3 seconds someone in the world develops dementia but most people with dementia do not receive a diagnosis or support. The annual cost of dementia is over US$ 1 trillion – a figure set to double by 2030. Deaths due to dementias more than doubled between 2000 and 2016, making it the 5th leading cause of global deaths in 2016 compared to 14th in 2000.

The “Let’s Talk About Dementia” campaign simply aims to stimulate a conversation about dementia, the warning signs, risk reduction, who to speak to and where to go for advice. Lack of knowledge about dementia leads to inaccurate assumptions about its effects on the person and their family, as well as negative stereotypes about how a person with dementia will behave, Barbarino says. “Evidence suggests that when people living with dementia and their families are well prepared and supported, initial feelings of shock, anger and grief are balanced by a sense of reassurance and empowerment, so the campaign’s focus is on increasing conversations around dementia globally.”

The full World Alzheimer’s Report 2019: Attitudes to dementia, is available to read here.

For story ideas, interview requests and more information, please contact:

Alzheimer’s Disease International

Annabelle Dick
Mana Communications
T: +64 (0)27 819 7011
E: ad@manacommunications.com

Annie Bliss
Alzheimer’s Disease International
T: +44 20 7981 0886
E: a.bliss@alz.co.uk

About World Alzheimer’s Month

World Alzheimer’s Month is the international campaign every September to raise awareness and challenge the stigma that surrounds dementia. September 2019 will mark the 8th World Alzheimer’s Month. The campaign was launched in 2012: World Alzheimer’s Day is on 21 September each year. For more information, please visit: https://www.alz.co.uk/world-alzheimers-month

About Alzheimer’s Disease International (ADI)

ADI is the international federation of 100 Alzheimer associations and federations around the world, in official relations with the World Health Organization. ADI’s vision is prevention, care and inclusion today, and cure tomorrow. ADI believes that the key to winning the fight against dementia lies in a unique combination of global solutions and local knowledge. ADI works locally, by empowering Alzheimer associations to promote and offer care and support for persons with dementia and their care partners, while working globally to focus attention on dementia and campaign for policy change. For more information, please visit http://www.alz.co.uk.

Truly smart homes could help dementia patients live independently

PixOfPop/Shutterstock

Dorothy Monekosso, Leeds Beckett University

You might already have what’s often called a “smart home”, with your lights or music connected to voice-controlled technology such as Alexa or Siri. But when researchers talk about smart homes, we usually mean technologies that use artificial intelligence to learn your habits and automatically adjust your home in response to them. Perhaps the most obvious example of this are thermostats that learn when you are likely to be home and what temperature you prefer, and adjust themselves accordingly without you needing to change the settings.

My colleagues and I are interested in how this kind of true smart home technology could help people with dementia. We hope it could learn to recognise the different domestic activities a dementia sufferer carries out throughout the day and help them with each one. This could even lead up to the introduction of household robots to automatically assist with chores.

The growing number of people with dementia is encouraging care providers to look to technology as a way of supporting human carers and improving patients’ quality of life. In particular, we want to use technology to help people with dementia live more independently for as long as possible.

Dementia affects people’s cognitive abilities (things like perception, learning, memory and problem-solving skills). There are many ways that smart home technology can help with this. It can improve safety by automatically closing doors if they are left open or turning off cookers if they are left unattended. Bed and chair sensors or wearable devices can detect how well someone is sleeping or if they have been inactive for an unusual amount of time.

Lights, TVs and phones can be controlled by voice-activated technology or a pictorial interface for people with memory problems. Appliances such as kettles, fridges and washing machines can be controlled remotely.

People with dementia can also become disoriented, wander and get lost. Sophisticated monitoring systems using radiowaves inside and GPS outside can track people’s movements and raise an alert if they travel outside a certain area.

All of the data from these devices could be fed in to complex artificial intelligence that would automatically learn the typical things people do in the house. This is the classic AI problem of pattern matching (looking for and learning patterns from lots of data). To start with, the computer would build a coarse model of the inhabitants’ daily routines and would then be able to detect when something unusual is happening, such as not getting up or eating at the usual time.

A finer model could then represent the steps in a particular activity such as washing hands or making a cup of tea. Monitoring what the person is doing step by step means that, if they forget halfway through, the system can remind them and help them continue.

The more general model of the daily routine could use innocuous sensors such as those in beds or doors. But for the software to have a more detailed understanding of what is happening in the house you would need cameras and video processing that would be able to detect specific actions such as someone falling over. The downside to these improved models is a loss of privacy.

Future smart homes could include robot carers.
Miriam Doerr Martin Frommherz/Shutterstock

The smart home of the future could also come equipped with a humanoid robot to help with chores. Research in this area is moving at a steady, albeit slow, pace, with Japan taking the lead with nurse robots.

The biggest challenge with robots in the home or care home is that of operating in an unstructured environment. Factory robots can operate with speed and precision because they perform specific, pre-programmed tasks in a purpose-designed space. But the average home is less structured and changes frequently as furniture, objects and people move around. This is a key problem which researchers are investigating using artificial intelligence techniques, such as capturing data from images (computer vision).

Robots don’t just have the potential to help with physical labour either. While most smart home technologies focus on mobility, strength and other physical characteristics, emotional well-being is equally important. A good example is the PARO robot, which looks like a cute toy seal but is designed to provide therapeutic emotional support and comfort.

Understanding interaction

The real smartness in all this technology comes from automatically discovering how the person interacts with their environment in order to provide support at the right moment. If we just built technology to do everything for people then it would actually reduced their independence.

For example, emotion-recognition software could judge someone’s feelings from their expression could adjust the house or suggest activities in response, for example by changing the lighting or encouraging the patient to take some exercise. As the inhabitant’s physical and cognitive decline increases, the smart house would adapt to provide more appropriate support.

There are still many challenges to overcome, from improving the reliability and robustness of sensors, to preventing annoying or disturbing alarms, to making sure the technology is safe from cybercriminals. And for all the technology, there will always be a need for a human in the loop. The technology is intended to complement human carers and must be adapted to individual users. But the potential is there for genuine smart homes to help people with dementia live richer, fuller and hopefully longer lives.The Conversation

Dorothy Monekosso, Professor of Computer Science, Leeds Beckett University

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

Our ailing aged care system shows you can’t skimp on nursing care

The royal commission has scrutinised aged care staffing.
From shutterstock.com

Apil Gurung, University of the Sunshine Coast and Samantha Edwards, University of the Sunshine Coast

Staff shortages and a lack of training have once again emerged as key issues underpinning the nation’s aged care crisis, as the aged care royal commission hears testimony in Perth.

Registered nurse Noleen Hausler shared the experience of her 98-year-old father, Clarence, who was force-fed, assaulted and had a serviette held over his nose by a carer who was later convicted of aggravated assault.

Aside from this criminal behaviour, Ms Hausler said the standards at her father’s aged care facility declined after a new operator reduced staffing levels and employed carers with little training. Call bells went unanswered, she said, and incontinence pads were rationed.

Ms Hausler has called for increased ratios of registered nurses in aged care facilities, and better training and registration for carers.

Under-staffing and inadequate training have long been problems in Australia’s aged care facilities, with aged care facilities employing fewer registered and enrolled nurses and more carers who have lower levels of training.




Read more:
Nearly 2 out of 3 nursing homes are understaffed. These 10 charts explain why aged care is in crisis


Who does what in aged care?

A registered nurse (RN) provides nursing leadership and clinical supervision in aged care facilities. They are skilled clinicians who can respond to medical emergencies and are qualified to carry out assessments.

Registered nurses undergo three years of undergraduate study at university and are registered with the Australian Health Practitioner Regulation Agency (AHPRA) in order to practise in health care setting across Australia.

An enrolled nurse (EN) conducts observations and assessments, and collaborates with and seeks assistance from the registered nurse in charge. Enrolled nurses are registered with AHPRA and undergo an 18-month diploma of nursing at TAFE.

Finally, care workers form the bulk of the aged care workforce and perform tasks such as showering, dressing and feeding residents. Titles for carers vary and include assistant in nursing, personal care worker, personal care attendant, and aged care worker, to name a few.

Care workers are required to complete a certificate III-level course, which can take up to six or seven months, but don’t require registration.

Carers cost less than nurses

There is no clear legislation requiring a certain number of registered nurses, enrolled nurses and carers to be on duty at certain point in time. The Aged Care Act 1997 is open to interpretation, so aged care providers are largely free to set their own staffing levels.

As a result, in recent years aged care operators have recruited proportionally fewer registered and enrolled nurses and increasing numbers of unregulated carers.

Residents in aged care have complex needs, and those looking after them need to be equipped.
From shutterstock.com

The changing make up of the aged care workforce is mainly influenced by economic advantage: hiring carers is cheaper than hiring registered or enrolled nurses.

It can also be difficult to find enough nurses. Nurse retention in aged care has been a major challenge for the industry because aged care providers often pay lower wages than hospitals.

But nursing care is worth the investment

Research shows having a greater number of registered nurses increases patients’ well-being and safety. Better staffing levels allow nurses to spend more time caring for residents and reduces the likelihood that vital information is overlooked.

Adequately staffing aged care facilities has economic benefits by reducing staff turnover related to burnout and job dissatisfaction.

Employing skilled registered nurses in aged care facilities can also save the health system money by reducing the number of costly hospital admissions that arise because residents can’t be adequately cared for in their aged care facility.




Read more:
Want to improve care in nursing homes? Mandate minimum staffing levels


Aged care residents often have mental health issues, face cognitive decline or dementia, take multiple medications each day, are physically frail, and often have multiple chronic conditions such as heart disease, diabetes, cancer, arthritis or asthma.

But it’s difficult to meet the needs of these patients with the current aged care staffing and skill levels.

More than 50% of the residents in a residential aged care facilities have some form of dementia, for example, yet more than 50% of aged care workers have no dementia training.

Substituting registered nurses with lesser skilled carers has meant tasks such as medication management have been assigned to carers in some aged care facilities, despite this being a high-risk task that requires a high level of skill and experience.

What are the solutions?

Carers currently make up around 70% of the aged care workforce. We need to reset aged care staffing levels and ensure we have the right skill sets, which industry bodies suggest is: 30% registered nurses, 20% enrolled nurses and 50% care workers.

It’s also time to professionalise caring roles with better regulation and the introduction of carer registration.

Registration would clarify carers’ roles and allow only the delegation of tasks which are deemed safe for carers to carry out within their scope of practice. It would also ensure minimum training standards are met and that quality and safety is maintained.

The aim is not to vilify carers, who are the backbone of our aged care system, but rather to highlight the need for the right level of training, education and support to strengthen the aged care workforce and complement the care provided by registered and enrolled nurses.

Finally, we also need to increase the number of registered and enrolled nurses in the aged care workforce with guided pathways to attract and retain nurses. Well-structured graduate nurse programs, for instance, can provide support and guidance to the graduates who are considering a career in aged care.




Read more:
Don’t wait for a crisis – start planning your aged care now


The Conversation


Apil Gurung, Lecturer, University of the Sunshine Coast and Samantha Edwards, Lecturer in Nursing, University of the Sunshine Coast

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

Aged care failures show how little we value older people – and those who care for them

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Our society should ensure older people remain employed and engaged in their communities, rather than pushed to the margins.
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Bridget Laging, La Trobe University; Amanda Kenny, La Trobe University, and Rhonda Nay, La Trobe University

As the royal commission begins investigating the failures of the residential aged care sector, it is important such a review also considers the broader socio-political factors that have contributed to this crisis.

The commission needs to go beyond the institutional problems at individual aged care facilities, as these are a symptom of a much broader rejection of ageing in society and marginalisation of older people.

Negative stereotyping of older people is reinforced in the media, and this both informs and reflects societal attitudes. In Western society especially, we fear dependency, invisibility and dying. Aged care is a silo of these fears. And until it affects us personally, we ignore it.

How older people are marginalised in society

We have an expiry date in our society. This is not the date we die, but a time when our skills and knowledge are no longer considered to be valid or useful. Our value is largely determined by our economic contributions to society. But for many older people, this is difficult to demonstrate because they’re no longer in the workforce.

The economic impact of societal rejection of ageing is significant. Modelling by Price Waterhouse Cooper indicates that Australia’s gross domestic product would increase by almost 5% if people were supported to work longer. And data from the Australian Bureau of Statistics reveal that many Australians would like to retire later if they could.

Yet, there is evidence that older people are routinely denied work. In 2016, Age Discrimination Commissioner Susan Ryan said there was an urgent need to “tackle the discrimination that forces people out of work years before they want to leave”.




Read more:
We’ve had 20 aged care reviews in 20 years – will the royal commission be any different?


While older people should be supported to work longer if they wish, over half of Australians between the ages of 65 and 80 report a moderate or severe disability, resulting in greater dependency. A 2017 study of late-life dependency published in The Lancet found that, on average, older people will require 24-hour care for 1.3 to 1.9 years of their lives.

However, it is important that older people are not considered redundant in their societal role when dependency increases.

Aged care workers are also undervalued

Residential aged care facilities fulfil an essential role in our society. Yet, our recent ethnographic study in two residential aged care facilities in Victoria shows how this role has been compromised by an under-skilled, under-valued and overworked aged care workforce.

Older people were exposed to a revolving door of anonymous workers, significantly reducing opportunities for teamwork and fostering relationships between staff and residents. In one of the not-for-profit facilities, a single registered nurse was responsible for the care of 73 residents. This contributed to the delegation of an increasing range of tasks to unregistered personal care assistants with minimal training and delays in recognising signs of health deterioration among residents.




Read more:
How our residential aged-care system doesn’t care about older people’s emotional needs


A reliance on general practitioners also increased the likelihood of hospital transfer. And hospital transfers can sometimes prove harmful, with previous studies showing that the noisy, fast-paced environment, bright lights and anonymous faces can have a negative impact on residents, particularly those with dementia.

Within the healthcare sector, aged care has the lowest status of all specialty areas amongst nurses and doctors. Recruiting appropriately qualified and skilled people to work in aged care is thus a constant challenge. Australia is expected to increasingly rely on imported labour to staff its aged care sector in the near future.

Ways to fix the system

Encouraging more healthcare professionals to enter the aged care sector will require a multi-pronged approach, starting with finding ways to engender more professional respect for those working in the field.

Greater emphasis also needs to be placed on improving the gerontological expertise of aged care workers. This can be strengthened by prioritising aged care in medical school education and recognising “nursing home” care as a specialist medical area. It is also imperative that personal care assistants receive greater recognition of the roles and duties they perform.




Read more:
Australia’s residential aged care facilities are getting bigger and less home-like


Registration of personal care assistants as third-tier health care professionals is well overdue to ensure better oversight of their training and scope of their practice.

We also need to recognise the importance of human connection in residential aged care facilities. This requires strategies to build better relationships between residents and staff, and developing a formula for more accurate staffing allocations that reflect the real time commitments involved in aged care.

Who bears the ultimate responsibility?

It’s not enough to be shocked by the aged care scandals uncovered by the media and the decision to appoint a royal commission to investigate. We must also make older people, their contributions and end-of-life needs more visible. Increased funding and oversight will only come when we collectively say it’s important.

It is incumbent on us to ensure that residential aged care facilities do not operate as holding bays for the silenced, or wastelands for the discarded, where the occupants are expected to demand nothing and be as little cost to society as possible.

We have an opportunity to reconstruct the delivery of residential aged care. Let’s begin with the end in mind: a society that not only values older people, but values the resources required to provide the care they need and deserve.The Conversation

Bridget Laging, PhD Candidate, La Trobe University, La Trobe University; Amanda Kenny, Violet Marshman Professor of Rural Health, La Trobe University, and Rhonda Nay, Emeritus Professor La Trobe University, La Trobe University

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

How to help people with dementia retain the power of choice

How to help people with dementia retain the power of choice

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Which pair?
Monkey Business Images/Shutterstock

Rebecca Sharp, Bangor University and Zoe Lucock, Bangor University

Deterioration in the ability to produce complex speech or understand what people are asking, can make it difficult for people with dementia to make choices in conventional ways. It can be simple things like deciding which clothes to wear, or what to have for dinner. But when a person is in the more advanced stages of dementia, and may not be able to speak at all, it can be difficult for those caring for them to work out what their preferences would be.

To help the estimated 280,000 people with dementia who are living in UK care homes, family members are often asked what their loved ones would prefer and notes are made by staff. But we know that people’s preferences can change, sometimes on a daily basis, and are hard to predict even by people who know them really well.

Take the example of Mrs Jones. Care workers know that she likes both tea and coffee, but that she prefers tea. If Mrs Jones finds it difficult to tell them what she wants, how will they know that today is the day that Mrs Jones fancies a coffee?

Behavioural researchers have found that one way to figure out what a person would like is to measure how they respond when provided with different options at the same time. For example, to find out whether a person prefers a biscuit or a scone, the two treats are presented together for the person to choose.

As the person making the choice is unable to speak, physical behaviours such as reaching, touching, and picking up the item are watched to find out which they would like. Studies which use this method are usually done with people with dementia in their care home, and tailored to the individual taking part. While the researchers can find out what works best, it also means that people with dementia benefit directly from taking part in the study. Staff are also shown how to find out preferences – leading to immediate improvements in care.

Though it seems like a simple thing to put into practice, this “choice” method is not currently part of the UK care system. However, we have been testing to see whether it could be used in all care homes, to give everyone with dementia more choice in a place where it has traditionally been limited. By observing what people do rather than what they say, care staff can get a more objective idea of what people like, measure their preferences daily, track how they change, and – most importantly – give people with dementia and communication issues more of a voice in their daily lives.

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Photographee.eu/Shutterstock

Our work forms part of the first UK project of its kind in the field of behavioural gerontology. The preferences research is part of a series of studies all focused on using behaviour analysis to help improve the quality of life of people with dementia. In addition, students on Bangor University’s applied behaviour analysis programme are trained to specialise in this approach with older adults.

Though the project itself is due to go on for another year, we have already confirmed previous findings from US-based care home studies which showed that people with dementia prefer activities over food items when given a choice between them. For example, we found that people chose activities such as jigsaws, crosswords, and crochet over treats such as custard tarts and pork pies.

This might be because one risk for people with dementia in long-term care is that they can spend a lot of time unengaged. It can be difficult to find lots of meaningful activities for care settings, and opportunities for conversation can be reduced. So activities become more valuable because they give people something to do and to talk about with other people, while food might become less valuable due to sensory changes associated with dementia such as changes in ability to taste and swallow.

Putting this into practice, we now know that if a person with dementia is to be given food and activity choices, they should be done separately – rather than at the same time, like the biscuit and scone example – as preference for taking part in an activity might overshadow a food choice. In the long run, this means that staff don’t learn what people’s food preferences are, too.

For the next stage of our research, we are going to work with people with developmental disabilities (for example, Down Syndrome) who develop dementia. People with developmental disabilities often develop dementia at a younger age, and are more likely to develop it than those who do not have a developmental disability. They are often diagnosed late, too, due to “diagnostic overshadowing”, where changes in behaviour are attributed to their disability rather than dementia.

Previous research has found that people with developmental disabilities will often choose food over activities when a choice between the two is offered (the opposite of people with dementia). However, no one has yet looked at whether this preference shifts when people with developmental disabilities develop dementia. If we know how preferences change, we can ensure that care settings tailor their support.

We all value having choices, and our work is focused on evaluating and developing ways to ensure that people with dementia and developmental disabilities continue to be offered choices, even in the smallest of ways.The Conversation

Rebecca Sharp, Senior Lecturer in Psychology, Bangor University and Zoe Lucock, PhD Researcher, Bangor University

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

Stressed and exhausted caregivers need better support

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Up to 80 per cent of community care for older adults is provided by unpaid informal caregivers. In the absence of government supports, many of them struggle with exhaustion, stress and depression.
(Shutterstock)

Jenny Ploeg, McMaster University and Maureen Markle-Reid, McMaster University

When Brenda retired from paid work, it was like a care-giving tsunami.

Her dad and stepmom moved in with her, her husband had a heart attack and she became a grandma — all within six months.

Brenda is one of 8.1 million Canadians who have taken on challenging unpaid roles — as informal caregivers for people living with physical or cognitive conditions or chronic life-limiting illnesses.

Her stress increased as her parents started to deteriorate physically and mentally. She tried to stay ahead of the ever-changing situation, but became exhausted after her dad started waking in the middle of the night and getting dressed to go out.

She looked on the internet for support in her care-giving role.

As co-scientific directors of the Aging, Community and Health Research Unit at McMaster University, we are working together with older adults with multiple conditions and caregivers like Brenda to promote optimal aging at home.

Our research shows that current health and social services do not address the complex needs of older adults or their family caregivers.

It also suggests that web-based interventions may help reduce depressive symptoms, anxiety and stress or distress for these caregivers.

Who cares for the caregivers?

Older adults with chronic conditions rely heavily on their family caregivers to coordinate their care, monitor medication and accompany them to appointments.

In fact, 70 to 80 per cent of community care for older adults is provided by informal caregivers as opposed to formal care providers.

Increasingly, these older adults have multiple chronic conditions (MCC), such as dementia and stroke, not just one. And as this prevalence of multiple conditions increases worldwide, it’s associated with poor health and higher health-care use and costs.

Women represent a slight majority of Canadian caregivers at 54 per cent and spend more time per week on caregiving than males.

Caregivers report that they do not receive adequate home care or respite services to support them in their roles. There are, for instance, long wait lists for long-term care beds.

Research shows that caregivers spent $12.6 million in one year on expenses related to their roles.
(Shutterstock)

While caregiving is rewarding, many informal caregivers experience stress and anxiety leading to their own poor mental and physical health.

Informal caregivers feel overwhelmed with multiple requests for their time and frustrated when they can’t plan too far in advance.

“I felt like I was spending a lot of time waiting. Waiting for people to get ready. Waiting for people to get back to me. Waiting at appointments,” said Brenda.

Some reach a crisis point and leave their loved ones in the hospital emergency room because they are unable to continue in their caregiving role. This contributes to an already overburdened acute-care system.

Web-based supports can help

We conducted a systematic review and meta-analysis that examined the impact of different types of internet-based interventions on caregiver mental health outcomes.

One example of such a web-based support is My Tools 4 Care, developed by our colleague Dr. Wendy Duggleby at the University of Alberta and her team.

We found evidence that internet-based interventions had a positive effect on reducing depressive symptoms, stress, distress and anxiety in caregivers of adults with a chronic condition.

Internet-based interventions reduce caregiver depression and anxiety.
(Shutterstock)

The most effective category of online support was information and/or education with or without professional psychological support. Information provided together with combined peer and professional psychological support was also effective, to a lesser extent.

However, although many websites for caregivers provide valuable information, we found that they need to be easier to navigate and use.

Caregivers in our study made recommendations to improve the content and format of online resources. Suggestions included: Providing personalized information about local resources; sharing practical caregiving tips and strategies; creating opportunities to connect online with other caregivers; and having user-friendly features that are easy to navigate.

Nova Scotia leads the way

Caregiving comes with costs to the caregivers — to their health and to their finances.

Half of caregivers are between 45-65 years of age, in the peak of their earning years. They often take time off work to take their loved ones to appointments, and some must leave work early when the health of their loved one worsens. Out-of-pocket expenses for equipment, medications and parking can also be expensive.

Research shows that caregivers spent $12.6 million in one year on expenses related to their roles.

Nova Scotia is the only province in Canada that has a monthly income or allowance for caregivers, known as the Caregiver Benefit Program. Financial assistance from the government for caregivers in other parts of Canada mainly take the form of federal tax credits and insurance benefits.

And yet caregivers make vitally important but often unrecognized contributions to our society. It is estimated that they contribute $25 billion in unpaid labour.

Change is urgently needed to better support our caregivers.The Conversation

Jenny Ploeg, Professor, School of Nursing, McMaster University and Maureen Markle-Reid, Associate Professor and Canada Research Chair in Person Centred Interventions for Older Adults with Multimorbidity and their Caregivers, School of Nursing, McMaster University

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