Oct 13, 2020

“In my five years of caring, I never slept one whole night” – study looks at how sleep deprivation impacts carers

Family caregivers, particularly those caring for people living with dementia, are suffering from sleep deprivation and a range of related health problems. 

New research from Edith Cowan University, published this month, has shed light on the extent of the problem, finding that 94% of participants in the study experienced sleep disturbances. 

It’s a problem that can go on for years.

An Australian-first study to solve the sleep problem

The new Edith Cowan University (ECU) study was led by Dr Aisling Smyth from ECU’s School of Nursing and Midwifery and conducted in conjunction with Alzheimer’s WA. It investigated the sleep characteristics and disturbances of 104 Australian caregivers of a person living with dementia. In addition, it assessed the psychological wellbeing of caregivers by evaluating associations between mood and sleep.

Although sleep is increasingly understood as a critical part of a person’s overall health, there was a paucity of research around sleep in dementia caregivers. A 2019 report from Carers Australia found that there were no Australian studies on sleep for carers of people living with dementia. 

The ECU study aimed to learn more about the extent of the problem, and to identify predictors of poor sleep, which can assist to investigate solutions for sleep deprivation in dementia caregivers. It found that caregivers were predominantly female and aged between 61 and 74-years-old. The average length of time that participants had been in the caregiving role was 58 months, or 4.8 years. 

The importance of sleep for caregivers

Sleep problems are extremely common for caregivers of people living with dementia. Waking during the night is often a common occurrence for those diagnosed with dementia, and so it becomes difficult for carers to get sufficient sleep. Emma McBride, Member for Dobell in New South Wales, is advocating for more Government support for carers. ‘Caring for someone with dementia is around the clock and sleep deprivation goes hand in hand with the responsibilities,’ she says.

The study identified three main reasons why carers experience poor and disturbed sleep. The majority of these were related to the care of the person living with dementia, as they woke repeatedly through the night to attend to their loved ones needs and assist with pain and restless legs. The third reason was the emotional distress related to caregiving, including losing sleep due to stress, anxiety and worrying.

Stress was identified as being the most significant predictor of overall sleep quality. 84% of the study participants reported having difficulty initiating sleep, and 72% reported difficulty maintaining sleep.

Sleep deficiencies can interfere with a person’s work, driving and social functioning. Many long-term caregivers report increasing isolation as they find it more difficult to socialise with others. They can also experience difficulties focusing and reacting, negatively impacting their ability to provide care. ‘To support the person living with dementia to remain at home, preserving sleep and maintaining caregiver health is vital,’ Dr Smyth says.

The majority of the participants were also identified as having other health problems; 44% reported having two or more comorbidities including cardiovascular disorders, bone and joint disorders and endocrine disorders such as diabetes and thyroid dysfunction.

Carers need more support to continue providing care

Family and friends of those living with  dementia often play a significant role as the person begins to deteriorate so that they can stay at home for longer. As noted in the ECU study, over 80 billion hours of informal care are provided to people living with dementia across the globe. 

A Deloitte Access Economics report titled ‘The Value of Informal Care in 2020’ states that the value of this care to the economy is nearly $80 billion a year. ‘Yet Government support for carers is only a fraction of this amount,’ Ms McBride says. ‘Greater investment in the care economy would benefit those in need of care and their carers.’

This important care is essential for the quality of life of people living with dementia, and in some cases can be highly rewarding. However, and especially when this care falls predominantly to one person, providing care can be a chronic stressor and result in a decline in the mental and physical health of caregivers. 

‘Carer fatigue is a very real thing,’ says Sarah Walbank, Senior Quality and Improvement Officer at Carers Queensland. ‘In my five years of caring, I never slept one whole night. I got up five times a night on average.’ 

Majority of people would prefer to care for their loved one at home, rather than move a person living with dementia into long term care. But the strain placed on caregivers is often too significant, contributing to a myriad of physical and psychological issues. 

If people living with dementia are to remain at home and within their communities, it is vital that more support is offered to caregivers so that they can maintain their own health. 

Dr Smyth is continuing her research, working on a new program to promote better sleep for dementia caregivers at ECU Psychological Services.

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  1. Sleep deprivation has been used as a torture method across the globe throughout recorded history. WWII Prisoners of War were regularly kept awake for days on end in order to wear them down in the hopes that they would break & divulge any sensitive information they had to their captors. While inadequate sleep & broken sleep are not as bad as not sleeping at all, it is still enough to render some people unable to function properly. The old adage that you cannot pour from an empty cup is so very true when it comes to care givers which is why access to respite care is so very important!


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