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.
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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.
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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.

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Dementia coaching program offers chance to live well

News Release
August 8, 2018 | Australia, Dementia coaching program offers chance to live well

Support available for Sydney residents diagnosed with dementia
A new University of Sydney trial offers coaching and peer support to help people newly diagnosed with dementia cope with their prognosis and stay active and involved in their lives and community.

“I want to try and help people see they can fight back…you can’t just give into it.”

Bobby Redman, Peer supporter living with dementia

Lead researcher Associate Professor Lee-Fay Low said the pilot study has the potential to fill a vital service gap with the latest research suggesting keeping the mind and body active could slow the progression of dementia.

“Following a dementia diagnosis many people withdraw from their friends and family for fear they will deteriorate quickly and can suffer immense grief or depression,” said Low, Associate Professor in Ageing and Health at the University of Sydney.

“There are over 400 000 Australians currently living with dementia and with a cure still some way off it’s essential that we help people with early dementia to live well.

“We hope that giving people the right support, tools and strategies from the onset could help achieve this.”

The Dementia Lifestyle Coach pilot study is a collaboration between the University’s Faculty of Health Sciences and Brain and Mind Centre.

Participants will receive 14 counselling and coaching sessions from a registered psychologist over a six-month period and will also have a regular phone or skype catch ups with a peer supporter who lives with dementia.


Retired psychologist Bobby Redman is one of the peer supporters involved in the study.

Photo of peer supporter Bobby Redman

Bobby was diagnosed with frontotemporal dementia two and half years ago at age 66 after she noticed problems remembering the names of close friends and an inability to find the right words to express herself.

“My story is a bit different because with my psychology background I knew something was definitely wrong – but a dementia diagnosis is still a shock for anyone,” said Bobby.

“And what’s probably hardest is that, like in my experience, many people with early dementia are just told to come back when things get worse or to get their things in order.

“But I’ve learnt that there are tools and strategies you can put in place to help manage the impact of dementia. Even simple things like using my phone to set daily reminders to drink water and stay hydrated.

“What I’d like to see is more clinicians trained to provide these strategies to people to help them overcome simple issues.

“I want to try and help people see they can fight back. I think that’s the key….you can’t just give into it.”

The pilot study will run over a 12-month period, with researchers aiming to assess the impact the coaching program has on participants’ mood, independence, activity levels and quality of life.

Participant information

The University of Sydney is trialling a counselling and coaching program for people living at home recently diagnosed with early dementia. To be eligible you must have received a diagnosis of early dementia within the past 6 months. Read more information about the Dementia lifestyle coaching study or contact Dr Annica Barcenilla on +61 2 9351 9837 or annica.barcenilla@sydney.edu.au

 

The Science of Recovering From an All-Nighter

A brilliant video on recovering from an all-nighter. For those who ended up staying up all night caring for a loved one, doing the dreaded one off night shifts or just stayed up to complete an assignment. The next couple of days just feel like walking in a dream or a really tiring nightmare. I usually find it hard to focus and my body feels like it’s totally out of wack. You know what I’m talking about. Anyway here is a video with some scientific tips on how to recover from an all-nighter that I have found to be super helpful!

 

Here are some of the helpful tips that have helped me in the video.

  • Don’t hit the snooze button!
  • Eat Breakfast!
  • No Sugar!
  • Only one cup of coffee
  • Get out in the Sun
  • Do the hardest task first then grab a 2nd cup of coffee
  • Light Lunch
  • 1 Coffee in the early afternoon but not after 3pm
  • Do simple tasks

So ya, I’ve been doing it all wrong literally and hitting the snooze button like 3 to 4 times in the morning, not eating breakfast, I think the only thing I did right was grabbing a single cup of coffee.

Here’s the link for the video from NYmag “The science of Us” for anyone who would like to check out their videos https://www.youtube.com/watch?v=piUgbJqgtIw

 

Individuality & Person Centred Care in Asia

Since a fortnight ago this tweet have been shared over 29,000 times and 21,720. Tweeted by Harudajin, he shares an unforgettable experience in his youth in primary school when his teacher shared with his students the meaning of individuality.

The teacher explained that when an instruction is provided to have the class write the word 晴, then everyone in  the class will write the word 晴. However, the result of the word 晴 will differ slightly from each student. However if given an instruction to write the word 晴 and the student wrote the word 雨, that is not viewed as individuality.

Below is the original tweet:

There is a lot of discussion about a social culture in Asia and the differences between the cultures between the East and the West. Individuality in this discussion is working together as a social being, but at the same time appreciating and accepting the differences that we exhibit as individuals. No two handwriting can be exactly the same and despite our very similar daily routine and habits, it’s the small intricacies and preferences that make us all different. Here the teacher explains that we don’t have to radically stand out to be different, we can all be different and still maintain a sense of cohesion and harmony without our culture.

No two handwriting can be exactly the same. Despite our very similar daily routine and habits, it’s the small intricacies and preferences that make us all different. Here the teacher explains that we don’t have to radically stand out to be different, we can all be different and still maintain a sense of cohesion and harmony without our culture, and that’s what individuality is all about.

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For Asians, harmony and cohesion are important factors and at times residents, and patients may not voice out our needs as they may not wish to inconvenience their carers and caregivers.

At a talk a few months ago about the Fukushima earthquakes, it was said that older adults that sought shelter in a gymnasium developed incontinence issues and muscle atrophy. Afraid that they were being disruptive and inconsiderate to fellow residents living in the open space temporary shelter, many remained sitting in their allocated space, not going to toilets allocated outside of the gymnasium.

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Image source: Japan Earthquake: Rescue, Recovery, and Reaction – The Atlantic

This scenario is not unfamiliar to nurses working in acute care, step down facilities, nursing home and other community care facilities where families complain about their love ones developing incontinence and decreased mobility. It’s a common case study where you have a person coming out of the hospital with incontinence and decreased mobility and nurses and loved ones are concerned about falls resulting in the person spending the rest of their life sitting in wheelchairs. Being put on pads due to their incontinence issues, the person may not wish to venture out in the public, and participate in activities reducing their social engagements and decreasing movement. So starts a vicious downward spiral where mobility is lost and depression sets in.

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All it takes is for us to care; to ask and encourage. To encourage our residents and patients and engage with them socially and to support movement. To ask about their preferences and how we can encourage our residents and patients to retain their independence and to maintain their mobility. This is a community effort, from governments to management to directors of nursing to the nurses and the care staff, we need to make time to care. Our residents and patients make an effort to not inconvenience us isn’t care a priority in healthcare in the first place?Person-centred care in Asia isn’t about being indulgent

Person-centred care in Asia is not about indulging a persons’ need for choices or the ability to be drastically different from everyone. It is about celebrating and supporting individuality and autonomy whilst maintaining harmony and social cohesion in the community. A fine balance, not in the pursuit of happiness but in a pursuit of peace. To be satisfied with the balance in life that brings us peace within.

it’s not 兴高采烈 but a 幸福美满的生活 that we yearn for.

Reference: Handwriting