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.
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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.

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

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Most aged-care residents don’t feel like they are loved or belong in their facility.
from shutterstock.com

Lee-Fay Low, University of Sydney

All humans have fundamental needs. These are physiological (food, drink, clothing, sleep), safety (emotional security, physical safety, health), love and belonging (friendships, community), esteem (respect, dignity) and self-actualisation (accomplishment, personal development).

For people living in Australia’s residential aged-care facilities, these needs are often not met.

Most residents do not feel they are loved or belong in the facility. Like aged-care resident Neda Borenstein, whose secret camera footage broadcast on ABC’s Four Corners showed her singing the Australian national anthem in bed while she waited more than three hours to be changed. “I’m just a number,” Neda told her carer when she finally returned to help her up.

Less than one-third of residents we interviewed said they were friends with another resident. This means most don’t have the social support associated with friendships. Most residents said they felt socially isolated, which is associated with poor well-being.

A 2016 study of residents’ lived experiences in an aged-care facility found many felt they had little dignity, autonomy or control. Outside of meal and structured activity times, people with dementia spend most of their time stationary, alone and doing very little or nothing.

One study looking at interactions between residents and their carers showed residents were alone 40% of the time they were observed. When staff were present, they mostly did not engage verbally, emotionally or physically with the resident.

Aged-care facilities can also feel psychologically unsafe to residents.
Residents with dementia may be locked in secure units or physically restrained, using mechanisms such as bedrails or restraining belts.

Residents sometimes don’t get along. They might argue yell, swear, pinch, hit or push each other. We don’t have good data about how often resident-to-resident verbal and physical aggression happens, but it can result in injury and even death.




Read more:
Violence between residents in nursing homes can lead to death and demands our attention


The consequences of unmet needs?

Residents can react negatively when their needs are not met. They become bored, sad, stressed, cranky, anxious, depressed, agitated, angry and violent.

In people with dementia, we used to call these reactions “behavioural and psychological symptoms of dementia” (BPSD). But people with dementia have been pointing out these are normal human responses to neglect, not symptoms of dementia. Almost all (90%) aged-care residents display one or more of these negative reactions.

In many facilities, staff “manage” such reactions with the use of sedating antipsychotic medications. But clinical guidelines recommend looking at the reasons people may be reacting that way and addressing those before medication.




Read more:
Needless treatments: antipsychotic drugs are rarely effective in ‘calming’ dementia patients


Half of nursing home residents have symptoms of depression, and a third have symptoms of anxiety. More than half of residents have been found in studies to behave in ways that might suggest they no longer wish to live. This includes refusing food or medication, one-third of residents having suicidal thoughts and a small number of nursing home residents actually taking their own lives.




Read more:
Too many Australians living in nursing homes take their own lives


Why does Australian aged care fail to meet fundamental human needs?

We might not be spending enough on aged care to enable providers to meet fundamental human needs. Australia spends about 1% of its GDP on long-term care – less than the OECD average of 1.5%.

Private investment in aged care is growing, as have residential aged care profits, but it’s a difficult industry in which to make money. Insufficient funding translates to insufficient staff and less skilled staff. Our funding system rewards dependency, and there are no funding incentives for providers to improve the psychological well-being of residents, or go beyond that to help them flourish.

Friendships are an important part of healthy ageing.
from shutterstock.com

People looking for a nursing home don’t have any independently provided information by which to compare quality or performance.

The National Quality Indicator Program – a program for measuring care in residential aged-care facilities that began in 2016 – was meant to provide information for people trying to compare facilities on clinical indicators of care quality.

But participation in the program is voluntary for providers. Neither quality of life nor emotional well-being indicators are included in the suite of quality indicators (even though one has been trialled and found to be suitable). We also don’t know if or when the data might be published.

What is needed?

We need a fundamental shift in community, government, service provider, staff and regulatory expectations of what residential aged care does. Our model of aged care is mainly about clinical care, while neglecting emotional care.

For instance, friendships are a unique social interaction that facilitate healthy ageing, but many residents told us that the social opportunities in their nursing home did not align with their expectations of friendship.




Read more:
Loneliness is a health issue, and needs targeted solutions


We need our model of care to be a model of a home. In a home everyone contributes, has a say in what happens in the home (such as the menu, interior design, routine and functions), is able to invite their friends to their home for a meal, and can leave during the day and come back at night. A home is a safe place, where people are loved and nurtured, and where they can be active and fulfilled.The Conversation

Lee-Fay Low, Associate Professor in Ageing and Health, University of Sydney

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

A new project shows combining childcare and aged care has social and economic benefits

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Intergenerational care programs encourage relationship building between generations.
Griffith University

Anneke Fitzgerald, Griffith University; Katrina Radford, Griffith University, and Lalitha Kirsnan, Griffith University

What happens when you bring a group of older residents to mix with young children in childcare? Clapping hands and singing songs is just one way they spend the morning together. These interactions are made possible by intergenerational care programs that have gained popularity in Australia in recent years.

Intergenerational care programs provide older adults and children aged three to five with care and social support in the same setting, for short periods of time. This has mutual benefits.

The widespread implementation of intergenerational care programs has the potential to solve many of today’s economic challenges associated with child and aged care, while enhancing the educational and social benefits in encouraging relationship building between generations.

Intergenerational care programs in Australia

Although intergenerational care programs are popular in the US and UK, they’re in their infancy in Australia.

Intergenerational care gives older participants an improved sense of life purpose.
Griffith University

Given changing economic, demographic and social pressures in Australia, there’s an increased need for quality and cost-effective care arrangements for both older people and young children.

There’s an anticipated rise in demand for formal care services associated with an ageing population in Australia. This is further compounded by an increase in people not having children, shifts in perceptions of family obligations for caring, rising divorce rates and rising female employment rates.

Accompanying the unprecedented demand for formal aged care services is the limited supply of such care. Finding appropriate care for both older people and young children in Australia is often difficult and unsuitable for the person in need of care or their carer.

The increase in demand for formal care services and the shortage of supply of such care highlights the need for alternative models. This includes models such as intergenerational care. But current intergenerational programs in Australia tend to operate in residential aged care facilities, lack a formalised program based on educational teaching strategies, and don’t keep track of or evaluate participant outcomes.

The Griffith University Intergenerational Care Project

The Griffith University Intergenerational Care Project focuses on trialling two models of care:

  1. a shared campus model where an aged care centre is located in the same place as a childcare centre
  2. a visiting campus model where childcare and aged care centres are located separately and one group travels to visit the other.
Both younger and older participants in the Intergenerational Care Project have expressed excitement and joy at being able to interact with each other.
Griffith University

The psychological and social benefits of intergenerational care programs are well recognised. Griffith University’s Intergenerational Care Project is investigating the educational, workforce and economic benefits intergenerational care programs can bring to Australia.

This research is now well underway and is being conducted across four locations within Queensland and NSW. It’s conducted with older adults living with dementia and children aged three to five years.

In this program, older people and children meet for one hour each week over 16 weeks. They partake in shared activities designed to enhance engagement between generations.

Preliminary results suggest the reception of the program has been positive. Both younger and older participants expressed excitement and joy at being able to interact with each other.

Benefits of intergenerational care

Intergenerational care programs give children the opportunity to learn from and connect with an older generation, improve children’s behaviour and attitude towards older people, and enhance the overall well-being of both young and old participants.




Read more:
Combining daycare for children and elderly people benefits all generations


For older participants, intergenerational care programs allow them to pass on their knowledge and interact with young children in a meaningful way. As a result, they feel an improved sense of life meaning and enhanced self-worth.

Broader benefits

Community perceptions of older adults and ageing also tend to shift from negative to positive. This is especially important because older people want to be treated as valued members in society.
Intergenerational care programs enhance the quality of relationships between ageing people and children, and challenge ageist stereotypes.

Intergenerational care programs create a strong opportunity to address ageism in society from an early age and challenge people’s assumptions about the contributions of people living with dementia or experiencing other forms of cognitive decline.

This is particularly important in Australia. It’s projected by 2050 about one million people will be living with a dementia-related illness. This represents an increase of 254% since 2011.

There are also economic and wider social benefits of intergenerational care.
Griffith University

Delivering intergenerational programs in one location is also attractive because of anticipated cost savings. Both aged care and childcare organisations can decrease total running costs by sharing resources such as skilled labour, learning materials, and buildings.

Our preliminary workforce interview findings suggest intergenerational care is a career path that interests staff. It also suggests creating a training qualification to enable this career path may address workforce shortages in both child care and aged care.




Read more:
What happened when we introduced four-year-olds to an old people’s home


Intergenerational care programs offer an effective alternative model of care in Australia in the face of increasing economic, demographic and social pressures. An extensive rollout of such programs has the potential to give families access to more, higher quality childcare, and helps older people feel like valued members of society.

Anneke Fitzgerald, Professor, Griffith University; Katrina Radford, Lecturer, Deputy Director Research IBAS, Griffith University, and Lalitha Kirsnan, Marketing and Communications Officer, Intergenerational Care Project, Griffith University

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

Beastie Boy John Berry died of frontal lobe dementia – but what is it?

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Jan Oyebode, University of Bradford

John Berry, a founder member of the Beastie Boys, has died of dementia at the age of 52. Berry’s father told Rolling Stone magazine that his son died from frontal lobe dementia, a rare form of dementia more properly referred to as fronto-temporal dementia.

Symptoms of fronto-temporal dementia usually begin in late middle age. Because the disease is not very well known, people with fronto-temporal dementia often have delays in receiving a diagnosis and may find the services they need are not available.

A tricky term

The terms used for this dementia are confusing. The changes in the brain are referred to as “fronto-temporal lobar degeneration”. These do not initially have any effect on people’s behaviour. Once signs and symptoms show up, it is possible to diagnose the condition as one of the “fronto-temporal dementias”.

When the frontal lobes – the parts of the brain lying immediately behind the forehead – are mainly affected, there are changes in behaviour or personality, resulting in “behavioural variant fronto-temporal dementia”. When the temporal lobes – parts of the brain near the temples – are mainly affected, dementia shows up through changes in language, of which there are two types: semantic dementia and progressive non-fluent aphasia. Whichever type of fronto-temporal dementia people have, they do not come to the doctor complaining of the sort of problems with memory loss that most of us think of as being signs of dementia.

We don’t know the specific symptoms that John Berry had as each case of fronto-temporal dementia is different, but about four to 15 people in every 100,000 have fronto-temporal dementias – and there are some common symptoms.

Losing the supervisor

There is huge variation in how fronto-temporal dementia progresses. But over time, it usually affects more and more aspects of thinking and functioning. It is a condition that shortens life, with people living about three to ten years after diagnosis.

So what happens during the earlier stages of behavioural variant fronto-temporal dementia – the type that is sited in the frontal lobes? One way of thinking of this area of the brain is to imagine it as the supervisor of complex activities and social behaviour. When the supervisor starts to do its job poorly, people develop trouble with complicated tasks. They may not be able to get started, so they may seem apathetic and lacking in energy. When they get started they may get stuck in a groove.

Fronto-temporal dementia is sometimes confused with depression.
IgorGolovniov/Shutterstock.com

One carer we spoke with described how his brother would drive the car late into the night until it ran out of petrol even though he knew, on one level, that he ought to stop to fill up.

Sometimes people repeat an action over and over in exactly the same way, perhaps arranging objects very precisely or following a set daily routine according to a strict timetable. As the frontal lobe overseer loosens control, people often become uninhibited. They may become blunt and tactless. They may act on appetites and urges in ways that are quite out of character: touching people, swearing profusely when irritated and eating excessive amounts of sweet foods.

A particular difficulty for friends and family is that people with this dementia lose their ability to empathise. They may no longer offer comfort if someone is in tears and may seem very self-centred.

As not many people are familiar with the condition, it is often mistaken for other more common conditions. People may put the changes down to mid-life crisis, stress at work, depression or the menopause. It is possible that the condition is often misdiagnosed.

On average, it takes four years to diagnosis after symptom onset for younger people with dementia, twice as long as for those over 65 years of age, by which time, relationships may have broken down. People with fronto-temporal dementia are often at a stage of life where they still have children – and sometimes parents – who depend on them. So this, coupled with their increasing needs for support can be very stressful for everyone. Yet a recent national survey, currently in press, found there was a lack of provision of appropriate care across most of the country.

Biomedical research is making strides in identifying many of the proteins that accumulate as plaques in the brains of the people affected. The genetic aspects which affect about one in every five to ten cases are also now understood. However, with a cure still a long way off, research into how to support and assist people to manage their day-to-day lives is also very important. In our research we have taken detailed accounts of the experiences of those affected and we will be using these to develop and test ways of helping people and their families to manage and live better with the condition.The Conversation

Jan Oyebode, Professor of Dementia Care, University of Bradford

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

You’re the voice: the evolution of the PainChek app

News Release
April 2018| Australia – You’re the voice: the evolution of the PainChek app

How can someone tell you they’re experiencing pain or discomfort that isn’t overtly visible, if they can’t communicate through speech? Professor Jeff Hughes from Curtin’s School of Pharmacy and Biomedical Sciences has created an app that gives a voice to people who are living with conditions that impact upon their ability to verbally communicate with others.

Elderly woman sitting down holding a phone with man sitting behind her.

One of these conditions is dementia, a neurodegenerative condition that affects the brain’s cognitive ability. It’s currently the second leading cause of death in Australia, and with the number of people living with dementia set to reach more than 536,000 by 2025, the demand for tools that help treat and manage the condition is sure to increase.

Professor Hughes’ brainchild was the world’s first smartphone app for pain assessment and monitoring, developed under the banner of Curtin start-up company ePAT (electronic Pain Assessment and Technologies Ltd) from 2014. The start-up was acquired by PainChek Ltd in 2016, and the app is now being further developed and marketed by the company as ‘PainChek’.

The app provides an accurate and reliable means for healthcare professionals and family members providing care at home to assess pain, and ultimately help to improve quality of life for those they care for.

“A significant issue among people with advanced dementia is that they no longer have the communication skills to express the level of pain they are suffering,” Hughes explains.

“The seriousness of their pain can often go unrecognised. But PainChek, a smart-device app, which utilises automation and artificial intelligence, allows for the detection and quantification of pain, based in part on a patient’s facial expressions.

PainChek uses facial recognition and a 42-point pain scale to help healthcare professionals and family members decipher the level of pain being experienced by their patient or family member, allowing them to respond accordingly. A level between zero to six represents no pain, seven to 11 mild pain, 12 to 15 moderate pain and anything above 15 means severe pain.

The tailored pain scale was developed by Hughes and his team through a tireless review of existing literature and tools, including the well-known Abbey Pain Scale, an observational pain assessment tool used nationally in the assessment of pain in people with dementia.

PainChek automates pain assessment, allowing for the continual evaluation of pain, and providing the user with access to a personalised pain chart of their patient or family member, which has been mapped over an extended timeframe. The chart is designed to be used in conjunction with other information recorded on the app, which correlates with or affects pain levels, such as medication types and dosages, activity levels and behaviour. All recorded data is backed up when the device is connected to the internet.

Since its inception in 2013, Hughes and his team have been working hard to assess and monitor the performance of the app. They’ve conducted validation studies with a range of Perth-based aged care providers, including Mercy Care, Juniper, Bethanie and Brightwater, comparing each generation of the app with the Abbey Pain Scale. Data from these trials was used to support the registration of the app as a Class 1 medical device in Australia (Therapeutics Goods Administration registration) and Europe (CE Mark) by PainChek Ltd.

Trials in aged care facilities were successful, validating the functionality and purpose of PainChek. One of the residents living with dementia was previously cared for at home by her husband. He says the app has been an invaluable tool for assessing his wife’s constant lower back pain.

“When we tested the app on my wife, we got a score of four out of 10. It was so quick and accurate. She’s in pain constantly with her lower back, and has trouble sitting down. The pain scale changes daily, and it makes me feel really comfortable that I can administer the necessary pain killers at any given time.”

In addition, the research has led to the development of a partnership with Dementia Support Australia, which comprises the two entities Dementia Behaviour Management Advisory Service and Severe Behaviour Response Teams.

“Dementia Support Australia sends consultants out to assist in the care of people living with dementia who have significant behavioural problems,” Professor Hughes says.

“What they had found from their own observations was that somewhere between 35 to 60 per cent of the people had undetected or undertreated pain, and they wanted the means to improve the assessment and documenting of that pain, and better demonstrate the effectiveness of their service.

“PainChek Ltd are effectively doing an implementation trial with them, starting here in Western Australia and then in South Australia. As part of the trial, we provide training and, after each roll out, we also offer clinical and technical support. In 2018, we’ll roll out the app to all 150 of their consultants Australia-wide.”

The development of the app hasn’t stopped there, with PainChek Ltd working on adaptations that can cater for other groups unable to communicate verbally: infants and pre-verbal children.

“Twenty per cent of children have chronic pain, with common causes being headaches and gastrointestinal or musculoskeletal conditions. And that pain can produce a whole range of issues, such as behavioural problems, poor interaction with others and avoiding school. Most people think that little kids don’t feel pain the way adults do, but we’re learning this isn’t the case,” Hughes reveals.

The intended impact of the children’s app is three-fold. One, to provide parents with surety about whether they’re taking the appropriate action. Two, to assist healthcare professionals in deciding what level of pain a child might be in and which medication to administer if applicable, and three, to encourage the investigation of the root cause of the pain to then seek the appropriate treatment.

Much like the adult app, the children’s app contains a number of items to help assess pain, however, the facial recognition element is far more in-depth due to the fact that children typically use more pain-associated facial expressions than adults. As a result, Hughes’ team has been capturing videos of children who are in pain, primarily during the immunisation process, with each video contributing to a database of coded images. With a preliminary algorithm already built, PainChek Ltd plans to have the first prototype available for trialling in 2018.

More information about the  app can be found on the PainChek website.

“Pop Drop” Study finds more ER visits & higher costs for older disabled patients with stressed caregivers

News release

“Pop Drop” Study finds more ER visits & higher costs for older disabled patients with stressed caregivers

Fatigue, sadness and poor health among the spouses who take care of disabled elders can mean higher Medicare bills for the patients.

Emergency room staff call it a “pop drop” – when a disabled older person comes in for medical attention, but it seems like the person who takes care of them at home is also seeking a break from the demands of caregiving.

It’s been hard to actually study the phenomenon. A new University of Michigan study suggests that tired family caregivers are associated with greater ER visits and higher overall health care costs for the person they care for.

In a paper in the new issue of the Journal of the American Geriatrics Society, the team reports their findings from a study of 3,101 couples over the age of 65, each with one spouse acting as caregiver for their disabled partner.

The researchers looked at the Medicare payments and emergency department visits for the disabled spouses in the six months after the caregiver spouses took standard tests to measure their fatigue, mood, sleep habits, health and happiness.

Even after they took into account many factors, the researchers found that in just those six months, emergency department visits were 23 percent higher among patients whose caregivers had scored high for fatigue or low on their own health status.

Patients with fatigued or sad caregivers also had higher Medicare costs in that same time period: $1,900 more if the caregiver scored high for fatigue, and $1,300 more if the caregiver scored high for sadness, even after all other factors were taken into account.

The cost of unpaid help

“Many of us who work in clinical settings feel that patients with high home caregiving needs, such as dementia, often rely on the medical system as a source of respite for their spouses or other caregivers, because other respite isn’t paid for,” says lead author Claire Ankuda, M.D., M.P.H. “But there hasn’t been a lot of data about it, and only recently has our society been talking about caregivers and potential ways to incentivize and support them as a way of keeping patients living at home.”

“Informal caregivers, including spouses, enable older adults with functional disability to stay out of the nursing home and live at home where they’d prefer to be,” says senior author Deborah Levine, M.D., M.P.H., an assistant professor of internal medicine and neurology at U-M. “Our findings suggest that we need to do a better job of identifying and supporting caregivers experiencing distress, in order to help caregivers feel better and hopefully improve outcomes in older adults with disability.”

Long-term data gives key insights

The couples in the study were all taking part in the long-term Health and Retirement Study, conducted by the U-M Institute for Social Research on behalf of the National Institutes of Health. Ankuda, Levine and their colleagues probed HRS data because it allowed them to correct for factors that other, short-term studies can’t – such as the baseline level of Medicare costs, demographic differences including income and education, and even whether the couples have adult children living nearby.

The findings add hard new data about the link between caregivers’ own experiences and the amount the Medicare system pays to take care of those the caregivers take care of at home.

Nearly 15 million older adults get help with everyday activities from spouses and other family or friend caregivers. In the new study, the researchers included couples where one spouse got help from the other with activities such as bathing, dressing, walking, getting into or out of bed, shopping, cooking, and taking medications.

Helping with these tasks on a daily basis, without pay or respite, can take a toll on the caregiver’s own health, wellness and mental state – which can lead to burnout. Medicare does not offer payment or formal respite coverage for family or friends who take regular care of older adults – and only covers home care by certified agencies under certain circumstances.

More research & services needed

Ankuda notes that studies on the impact of supporting family caregivers more formally are just beginning to produce results.

Meanwhile, health policy researchers are beginning to suggest that it may make fiscal sense to incentivize home caregiving, to keep seniors from needing more expensive nursing home care.

“I definitely think there are specific services that could help caregivers, if we can identify those people who are highest risk and provide a basic level of support such as an around-the-clock geriatric care call line that could help caregivers feel less isolated and talk to a nurse about whether, for example, to go to the emergency department,” Ankuda says. “This is a high-cost, vulnerable population.”

Formal respite care, peer support groups and other options could also help stave off fatigue and sadness – and the hospital staff who notice “pop drop” practices could help steer caregivers to such options. So could the primary care clinicians who take care of both the disabled spouse and the caregiver.

Because the new study takes into account the level of Medicare spending for the disabled spouse in the six months before their caregiver was interviewed, it may actually underestimate the impact of caregiver fatigue, she notes.

Indeed, before the authors corrected for the full range of factors, they documented that Medicare costs were lower for patients whose spouse-caregivers who reported being happy or rested. They also saw higher costs among patients whose caregivers had higher depression scores on a standard mood questionnaire.

One factor that wasn’t associated with higher costs in the new study was the caregiver’s score on a standard measure of sleep habits. Sleep disruption is harder to quantify in older people, Ankuda notes. But the measurement of fatigue, which can result from both the strain of caregiving and poor sleep, was clearly associated with both higher rates of emergency department visits and higher overall costs.

Featured IHPI Members

Claire
Ankuda

M.D., M.P.H.

,

Deborah
Levine

M.D., M.P.H.

Dementia, prevention & our children

There are 23 million people living with dementia in the Asia Pacific Region in 2015, costing the region a whopping US$185 billion. Little education exists on dementia for our children aside from countries such Australia, Japan, with some children attaining information in countries such as Korea, Singapore, Taiwan and China. However, there is nothing in the national curriculums to prepare children for Dementia or help children to fully understand  the need of dementia inclusive enabling communities or the preventative measures required for them to put in place at a young age to reduce their risk of dementia especially those brought about by lifestyle factors.

Ireland with slightly less than half the number of people living with dementia at approximately 20,000 people, and a population of 1.8 million and a land mass of 14,130 km2. Alzheimer’s Society reported that at least 30% of the young will know a person living with dementia. Last Wednesday it was announced on the Alzheimer’s Society website that Alzheimer’s Society and the Council for the Curriculum, Examinations and Assessment have included dementia in the school syllabus, making Northern Ireland the first to have a dementia friendly generation.

The resources are also available not just in English but also in the Irish language. Click here to view resources.

PRIMARY SCHOOL: The Archie Project from Reminiscence Learning has created a unique and innovative intergenerational awareness project to reduce the stigma associated with dementia. They believe that by engaging with young children they are dispelling the fear of dementia and changing the attitudes of our workforce for the future, providing education to support early diagnosis. Archie’s Story follows a scarecrow with dementia on his journey from exclusion to inclusion. The accompanying Archie workbook goes on to help children understand how Archie’s state of wellbeing improves by being understood, loved and included — a simple concept but one that both children and adults can relate to. The Archie Project provide books, workbooks, assemblies, scarecrow parades, Archie-related activities, training, drama and recognisable merchandise so that everyone can connect with the Archie character and learn how to engage with people with dementia in their families and communities. Links between schools and care homes enable children to put their new dementia awareness into practice. By increasing their knowledge of dementia, the project gives them confidence to interact with residents during visits to local care homes, where they take part in shared activities such as singing, gardening activities, coffee mornings, shared lunches, snooker, craft activities, tea dances and storytelling. Archie mascots encourage conversation and engagement with people at all stages of dementia. For more information visit www.reminiscencelearning.co.uk/archie (Source Alz Soc Youtube)

The promotion of dementia awareness not only helps us to create a better multi-generational dementia inclusive society but for our children, it will help them better understand the need for education and the impacts of negative lifestyle choices. A study based on a Comparison of the Prevalence of Dementia in the United States in 2000 and 2012 published in JAMA internal Medicine on the 21st November indicated that education appears to be a protector against dementia. Dr Kenneth Langa theorises that education “actually creates more, and more complicated, connections between the nerve cells so that you’re able to keep thinking normally later into life.”

In addition, Director of the Division of Behavioral and Social Research in the National Institute on Aging, John Haaga adds that “Education can not only change the brain, it can change your whole life… It affects what kind of work you do, of course. It also affects who your friends are, who you’re married to, whether you’re married. All aspects of life are affected by educational attainment.”

When children learn about dementia and the brain, they will also learn about the risk factors which will help them to adhere to healthier lifestyle choices. According to Dr Alina Cohen, “factors such as adhering to a healthy lifestyle including a diet that is rich in essential nutrients, regular exercise engagement, and having an adequate cardiovascular profile all seem to be effective ways by which to preserve cognitive function and delay cognitive decline.” This study by York University presented evidence that the delay of dementia is connected with healthy living which in turn aids higher brain function. On a whole, our children will understand the importance of education, strategies to building cognitive resilience and understand the need for a healthy lifestyle for a healthy brain. There are a whole lot more pros than cons in this picture and policy makers should really sit up and start using their brains to look at how this can be implemented. Students will be able to understand the effects of stress on the brain, the importance of prevention and help-seeking behaviours especially in the areas of anxiety and depression. On a systemic level, this will create not only a friendlier, integrated and healthier multi-generational society but one that in the future may potentially see a reduction in healthcare spending as a result of unhealthy lifestyle choices.

SECONDARY SCHOOL: In the summer of 2012, Stoke Damerel Community College was invited to become one of 21 Pioneer Schools as part of the Prime Minister’s Challenge on Dementia. The school took a unique approach to dementia education, placing it across the curriculum into as many subjects as possible and endeavouring to work in partnership with their community and local and national organisations. They placed emphasis on creative processes and outcomes, intergenerational contact and active learning. Subject leaders were actively engaged in determining the shape of dementia education in their own subjects. Some of the most successful projects at the school were those that involved creative ways of working and intergenerational activities. For example, as part of the PE curriculum, people with dementia visited the school to play croquet with year 7 students. For more information visit http://www.sdcc.net (Source Alz Soc Youtube)

In addition to Primary and Secondary school, Scout groups have also joined the cause On such program is A Million Hands a program that supports 4 main social issues, dementia being one of the four that have been selected by the young. The objective is to empower and enable the young and the youths to tackle these issues head on and have the courage to make a change. In the areas of dementia, Scouts may find themselves helping people with dementia to fight isolation or helping with awareness by teaching people to spot signs and symptoms of dementia.They may work to try and work to make communities more accessible and even work to campaign for a cure and improve the lives of people with dementia.

Dementia as part of the educational curriculum could well be a means to improve not just the future of our children but perhaps the society as a whole.