Caregiver’s Guide to Sleep

At least 34 million Americans are caregivers — that’s the number of folks who provide unpaid care to another adult age 50 or older. It’s more people than live in any single U.S state except California.

And the number is expected to grow. Today’s caregivers are mostly baby boomers, who were part of a population surge. There are seven potential caregivers aged 45 to 64 for every person aged 80 and older according to the AARP’s “caregiver support ratio” study. By 2030, that ratio will have fallen to 4-to-1.

Types of Caregivers

The responsibility of caregiving can fall onto almost anyone’s lap. Family members are often in charge of caring for others, whether that be young children or older adults within the family.

 Family caregivers who provide unpaid assistance are at risk for a number of health problems, especially when it comes to mental health. They’re more likely to experience higher levels of stress and depression.

 

Caregiving for People With Disabilities

The number of conditions that require part- or full-time caregiving covers a very wide range. But anyone — whether they live with a disability or not — can experience a sleep problem. When that person has a caregiver, the sleep problem affects both people.

A 2018 study of sleep characteristics in mothers of children with developmental disabilities found that nearly 40 percent slept less than seven hours per night. On average, such mothers woke up more than twice per night, typically to provide care to their children.

Caregiving for Seniors

Sleep is a struggle for all seniors. More than half report suffering from sleep problems. This is especially detrimental for those who share a bed with the person they give care too. If a caregiver’s partner is experiencing interrupted sleep, chances are they are too.

There are many health factors associated with caregiving for a senior. For example, dementia — a gradual decline of brain function which affects the ability to navigate daily life — affects about 1 in 11 Americans age 65 and older. Older people with dementia are also more likely to experience more sleep disorders. Some of the common sleep disturbances associated with dementia include:

• insomnia
• hypersomnolence (too much sleep)
• circadian rhythm misalignment (daytime sleeping)
• sleep-disordered breathing (snoring and/or sleep apnea)
• motor disturbances of sleep such as periodic leg movement disorder and restless leg syndrome
• rapid eye movement (REM) sleep behavior disorder (RBD)
• sundowning

Any of these disorders can disrupt the sleep of a caregiver, but the last two are the most dangerous.

REM Sleep Behavior Disorder (RBD)

When a person experiences an RBD episode, they have a vivid — often scary — dream which they act out physically and vocally. Because they are in REM sleep (the deepest phase of sleep), it can be difficult to wake them. The dreamer may believe they are being attacked and lash out; sometimes harming their partner.

One study of RBD patients and their partners found that 62.5 percent of partners had suffered an injury as a result of their spouse’s behavior while acting out a dream, and 9 out of 10 said their partners’ RBD episodes disturbed their own sleep.

Sundowning

More than 20 percent of Alzheimer’s patients experience sundowning which is characterized by increased agitation in the late afternoon or evening.

Pacing and shouting are common behaviors during sundowning, but wandering is the most frightening for a caregiver. It’s at this time that a dementia patient may be most likely to try to leave the home due to confusion.

Increased agitation at night for dementia patients does no favors for the caregiver trying to wind down before they begin their sleep routine.

Common Health Issues for Caregivers

With a rising need for caregivers, it is crucial to address the risks of caregiving. Studies have shown that caregivers under mental or emotional strain have a 63 percent higher mortality rate than non-caregivers, or caregivers who aren’t experiencing strain.

Amongst the many health problems for caregivers, sleep deprivation is one of the most detrimental. Medical researchers are only just beginning to understand the far-reaching implications of sleep deprivation. Not enough quality sleep leads to a host of problems, both physical and emotional.

So caregivers can view quality sleep as an opportunity. Improving sleep quality can help minimize physical and emotional problems.

Read on to see how caregiving can affect sleep, why better sleep can improve the caregiving experience, and what specific tips will help caregivers get better shut-eye — starting tonight.

Sleep Deprivation

Now the bad news: When we don’t get enough sleep, we’re putting our health at risk. For a caregiver, poor quality sleep will also harm their ability to give care. Their own lack of sleep will hurt their loved one’s health, too.

According to the National Institutes of Health, sleep deprivation can lead to these problems.

Decline in Overall Function

 

Lack of sleep impacts the ability to think clearly and react quickly. It also interferes with memory formation — drowsy people make mistakes but can’t learn from them.

Caregivers are typically performing many unfamiliar tasks in their new role. Lack of sleep won’t help them get better at new responsibilities like measuring out medication, administering injections, assisting with bodily functions, and others.

Decline in Mood

 

Anxiety, irritability, depression, and relationship problems are more likely when a person is not getting a good night’s rest.

Caregivers are already prone to these issues, especially partner caregivers who may not be getting the emotional support they need.

Decline in Health

 

Research cited by NIH suggests that poor quality sleep makes it more likely that someone will develop:

• high blood pressure
• heart disease
• obesity
• diabetes

Caregivers who are sleep deprived are more likely to have an increased amount of norepinephrine–a stress hormone which can increase blood pressure. They are also more likely to have an increase in daytime heart rate.

Sleep deprivation is also linked with the onset of dementia.

Developing any of these serious diseases will dramatically reduce the caregiver’s ability to provide care, if not make it impossible for them to do so.

Drowsy and Drunk Driving

Because a lack of sleep affects our decision-making and reaction time, people suffering from poor-quality sleep are a danger to themselves, their passengers, and other drivers when they are behind the wheel. Further, we don’t metabolize alcohol as well when we are fatigued. A drink that might have little effect on a rested person can impair a sleep-deprived one.

Caregivers are often asked to assume more responsibility for driving. If they aren’t getting enough sleep, driving could be dangerous

Caregiver Burnout

Medical researchers measure the effect that caregiving has on a person’s emotional and physical state with a statistic called the Caregiver Strain Index (CSI). Other statistics include the Care Burden Inventory (CBI), Caregiver Reaction Assessment (CRA), and Care Burden Scale (CBS).

The fact that such a measurement is necessary shows how seriously the medical community treats the caregiver burden.

Researchers study the strain associated with giving care to various types of patients. Studies have been conducted on caregivers for the following:

• Parkinson’s disease patients
• Psychiatrically ill youth
• ALS patients
• Dementia patients
• Heart failure patients
• Veterans with type 2 diabetes
• Individuals with autism spectrum disorder

Causes and Symptoms of Caregiver Burnout

All caregivers experience stress due to the burden of providing unpaid care, but the results of the studies above show that the burden can be worse in certain situations.

Caregiver strain was found to be higher when:

• The caregiver isn’t sure about their responsibilities.
• The caregiver has to assume responsibility for activities of daily living, like feeding, cleaning, bathroom activities, etc.
• The caregiver receives less help from friends and relatives.
• The caregiver doesn’t actively practice coping strategies.
• The caregiver is in a lower-income group.
• The patient suffers from emotional problems.

Studies have also found that the higher a caregiver’s strain, the lower the quality of life will be for the patient.

The strain can be worse for partner caregivers compared to other relatives or friends. A study of partner caregivers of dementia patients showed that partner caregivers struggled to acknowledge their own needs. In part, this was because of unmet emotional support needs — they could no longer rely on emotional support from their partner with dementia.

The close proximity of their partner when sleeping — or the need to move to a different bed to improve sleep — can exacerbate the problem.

Symptoms of caregiver strain are both physical and mental. They can include weight changes, substance abuse, and negative emotions like anger, anxiety, and irritability.

Another key symptom of caregiver strain is changes in sleep patterns. Poor quality sleep can result from caregiver strain — but high-quality sleep can help reduce it.

Benefits of High-Quality Sleep for Caregivers

Scientists compare sleep to eating. Both are activities we choose consciously — but there’s also a strong internal drive compelling us to do them. When we don’t eat, we feel hungry, and when we don’t sleep, we feel sleepy. There are no such signals when we forget to, say, practice the piano.

This alone indicates the importance of sleep, but medical research is illuminating many others.

A short but astonishing list of sleep benefits includes:

• immune function
• learning
• muscle growth
• mood

Basically, if you want to be healthy, smart, strong, and happy, sleep is your friend.

When we experience strain — like the strain of caregiving — sleep becomes even more important. Caring for someone else takes an incredible amount of effort that may be emotional, physical, and mental. Caregivers are learning, essentially, to be nurses. They are running a marathon of the mind and need to make sure they plan for recovery time.

Rick Lauber is the author of The Successful Caregiver’s Guide, and a former caregiver himself. His mother had Parkinson’s disease and leukemia; his father had Alzheimer’s disease.

While he was a caregiver for his parents, he and his sisters thought it might be a good idea to institute a regular conference call to talk about how things were going. He soon realized that it wasn’t a good idea after all.

“By the time we got on the phone with each other, it was later in the evening,” he remembers. “Personally, I was tired and not eager to engage in emotional conversation at that time — especially conversation that could get my brain working and prevent me from relaxing and getting some sleep.”

Rick says he walked away from some of those calls. “I realized that getting the best sleep possible would help me to be the best caregiver possible. Going to bed at a more regular time and with a clearer head, I felt better and could better serve as a caregiver for my parents.”

He adds, “I’ve heard from many caregivers who attempt to do it all but have difficulty managing. We have our own personal limits. You can push those limits occasionally, but you cannot do so regularly. The human body needs rest to remain at peak health and to perform at its best.”

Therefore, having an established bedtime routine can significantly improve your sleep. Minimizing usage of electronic devices winding down at a reasonable hour will do wonders for your overall health.

Tips for Better Sleep for Caregivers

We asked some former caregivers and caregiving experts to offer some advice for better sleep. Caregivers have unique needs and many of these tips speak to those.

Attend medical appointments with parents. Knowing what you are dealing with in terms of a parent’s physical and mental condition will help calm your thoughts from racing out of control in the middle of the night. Stop scaring yourself. Get the facts. Once you know what you are dealing with, you can make plans for treatment options.

– Joy Loverde, author of The Complete Eldercare Planner and Who Will Take Care of Me When I’m Old.

Review caregiving plans for tomorrow earlier in the evening, and have caregiving conversations earlier in the evening.

– Rick Lauber, author of The Successful Caregiver’s Guide and Caregiver’s Guide for Canadians

Hire a relief person. If your parent lives with you, one night a week hire someone to relieve you of your nightly duties so you can go to your own room, close the door, and get a good night’s sleep.

– Joy Loverde

Practice good sleep hygiene:

• Go to bed at the same time each evening (establish a routine).
• Keep the bedroom cool and dark.
• Stay off social media just prior to bedtime.
• Avoid eating or drinking before bedtime.
• Avoid strenuous exercise just prior to bedtime.
• Replace an old, sagging mattress with a new one.
• Try sleeping alone for several nights (if regularly sharing a bed with
• a partner).
• Try taking Melatonin (for best results, take 1 to 1.5 hours before

going to bed).

– Rick Lauber

Create a safer home environment. If your parent lives at home alone, make good use of night-lights, especially in hallways, bathrooms, and stairwells. Clear away potentially dangerous items especially items stored on stairways. Remove small portable furniture like ottomans, low tables, and area rugs.

– Joy Loverde

Although it can be tempting to use your electronics after a long day, it’s best to avoid any screens at least an hour before bedtime as the blue light can suppress the production of melatonin and disrupt the body’s natural sleeping patterns.

– Jocelyn Nadua, Registered Practical Nurse and Care Coordinator at C-Care Health Services

Better Caregiver Sleep Is Better for Everyone

Quality of sleep is important for everyone, but caregivers, who have assumed responsibility for another adult, are under unique emotional and mental strains that make sleep even more important.

Patients who need care — and the general public — increasingly rely on caretakers rather than taxpayer-funded or private institutions. In the years between 1984 and 2004, institutional use declined by 37 percent among the older population. Millions of people who might otherwise require expensive institutional care are getting it from in-home (sometimes unpaid) caregivers.

Helping caregivers get the benefits of quality sleep is a vital mission.