Dementia and Sleep
Dementia, a condition marked by a significant reduction in brain function, can be extremely challenging for patients and their loved ones. The symptoms can be troubling to cope with, and unfortunately, in many cases, continue to get progressively worse with time.
There are multiple types of dementia. The most common and well-known is caused by Alzheimer’s disease and is referred to as Alzheimer’s dementia (AD). AD is believed to affect 5.8 million Americans, and the economic impact is estimated to be $290 billion in 2019 for costs related to health care, long-term care, and hospice.
In the coming years, the incidence and burden of dementia is likely to continue increasing as greater numbers of people born during the baby boom move into older age. While researchers are working to improve our understanding of the brain and how to prevent and treat dementia, there is much to be learned, and it is clear that this condition will keep having a major impact on millions of people.
Dementia has a complex relationship with sleep. Patients with dementia frequently suffer from sleeping problems including insomnia, hypersomnia, circadian rhythm disorders, and sleep apnea. At the same time, sleep deprivation can worsen symptoms, and research is increasingly indicating that lack of sleep can be a risk factor for developing dementia.
In this guide, we’ll go in-depth about dementia and sleep. We’ll explain the different types of dementia as well as the symptoms, causes, and treatments of the condition. We’ll examine how dementia relates to sleep and how people with dementia and their caregivers can take steps to sleep better each night.
What is Dementia?
Dementia is a brain condition that causes a person to lose cognitive abilities. Dementia most often occurs in older adults, but it is distinct from normal reductions in memory or thinking abilities that happen with aging. With dementia, these problems are more common, severe, and frequently interfere with daily life.
What Are the Symptoms of Dementia?
Every patient can experience the symptoms of dementia in a different way. However, there are some common elements of dementia that can be identified as central symptoms of the condition.
These symptoms include reduced memory, reduced communication skills, changes to a person’s personality, feelings of disorientation, inability to do normal daily tasks, and engaging in highly disruptive or inappropriate behavior. Sleeping problems are common, and some patients suffer from seizures, hallucinations, or paranoia.
For most patients, dementia is a degenerative disease. That means that over time, the symptoms get worse. Depending on the person and the type of dementia, the negative progression may be steady over time, happen in stages, or occur all of a sudden. Most often, the symptoms get worse over a period of two to 10 years.
While no pattern applies exactly to every patient, symptoms are sometimes classified as early, intermediate, and late to reflect where they most often occur within the overall progression of the condition.
In early dementia, minor memory loss and changes to personality occur along with reduced ability to handle complex or abstract thinking, judgment, or language.
In intermediate dementia, these problems become worse, learning and remembering become further impaired, and patients may struggle with self-care. Personality changes can become more pronounced with certain traits becoming exhibited to an extreme degree, and behavior problems can become more significant.
In late dementia, a person may have virtually no ability to recall events, names, or faces. They may not recognize close family or know where they are. Speaking and listening can become extremely difficult or impossible, and self-care abilities can become virtually nil. Eating can even become dangerous as people may have limited ability to properly chew and swallow.
Does Every Patient Experience the Symptoms of Dementia?
No. Some patients may have more symptoms than others or may have a different rate at which the symptoms present. Not all patients follow the same schedule of early, intermediate, and late symptoms described above.
Symptoms can depend on the type of dementia a person has and the extent of the damage to their brain. A patient’s symptoms can be affected by other health conditions as well. For example, symptoms may be worse in patients with conditions like chronic bronchitis, diabetes, infections, or problems affecting the liver, kidneys, lungs, or heart. Drinking alcohol can exacerbate symptoms as can using certain types of prescription drugs.
How is Dementia Different From Memory Loss?
While dementia includes memory loss, most memory loss is not dementia.
No one has a perfect memory at any age, and it is known that memory tends to get worse as we get older. Researchers describe many age-related changes in the brain as normal, and these can lead to simple acts of forgetting such as misplacing an item or inability to recall a name or word.
This standard memory loss is distinct from mild cognitive impairment (MCI) and dementia. MCI is characterized by more frequent or significant problems with memory and/or language, but it falls short of truly disrupting everyday life. It is estimated that 15% to 20% of people over 65 have MCI. MCI is not dementia, but people with MCI are at a higher risk of developing dementia, specifically Alzheimer’s dementia, in subsequent years.
Unlike people experiencing normal aging changes or MCI, people who have dementia have multiple symptoms, tend to exhibit a negative progression of those symptoms, and find that their mental challenges interfere with taking care of themselves or handling everyday tasks. For this reason, dementia is believed to be the cause for greater than 50% of nursing home admissions.
How is Dementia Different From Delirium?
In some cases, people may confuse dementia with another mental condition known as delirium. While the names sound similar, there are important distinctions between them. Delirium affects attention and alertness more than dementia, which has a greater effect on memory. Delirium commonly has a clear starting point and comes on quickly while dementia normally begins without a definite start and worsens gradually.
What Are the Types and Causes of Dementia?
There are different types of dementia that are categorized according to the underlying brain problems causing the symptoms of dementia.
What Are the Other Causes of Dementia?
While the types of dementia described in the prior section represent the most common causes, there are other health problems that can give rise to dementia. In addition, there are many situations in which dementia can arise without a clear cause.
Huntington disease, a hereditary condition that causes degeneration of part of the brain, can cause dementia that slowly gets worse. Progressive supranuclear palsy (PSP) is a rare movement disorder, like Parkinson’s Disease, that can cause dementia in its later stages.
Prion diseases are another class of conditions that can lead to dementia. Prions are misfolded proteins that collect in the brain and create holes in brain tissue. The most common prion disease is called Creutzfeldt-Jakob disease (CJD), and most often it occurs with no known cause. CJD can arise based on inherited genes, and it can also be acquired. The acquired form is most well-known because it can be contracted from eating contaminated meat. “Mad Cow Disease” is more formally known as variant CJD (vCJD).
What is Reversible Dementia?
In the majority of cases, once dementia begins, it cannot be reversed. While treatments can try to stop or slow the progression, normally the fundamental trajectory cannot be flipped.
There are situations, though, in which treating an underlying condition can cure dementia if the amount of brain damage is not severe. When the damage is more severe, treating the underlying condition may not cure dementia, but it can halt its progression. These cases may be referred to as reversible dementia.
Examples of conditions that can lead to dementia but that may be treated to halt or reverse the progression include some operable brain tumors, hypothyroidism, fluid buildup around the brain, buildup of blood between outer layers of the brain, damage from the presence of toxins, deficiency of vitamins and minerals like vitamin B12, thiamin, and niacin, some infections, and abuse of drugs or alcohol.
How is Dementia Diagnosed?
Only a medical professional can diagnose dementia. Because memory loss is normal with aging, the presence of some reduced memory alone cannot be interpreted to be dementia. Instead, there are specific criteria for diagnosing this condition, and this necessitates a full examination and evaluation by a medical doctor.
The doctor usually begins by asking questions as part of collecting the patient’s medical history. In this process, the doctor can assess the patient’s ability to recall and communicate important health information.
The doctor can conduct additional testing, such as mental status or neuropsychological testing, to evaluate cognitive function. Neuropsychological testing is more rigorous and involved, usually lasting 1 to 3 hours, to give a deeper assessment of a patient’s brain health. It is more effective at differentiating between dementia and other types of cognitive problems.
Depending on a patient’s situation, other tests can include a physical exam, blood tests, a computed tomography (CT) scan, and magnetic resonance imaging (MRI) to try to identify any underlying cause or coexisting conditions that could contribute to a patient’s symptoms. A positron emission tomography (PET) test can be employed to distinguish between types of dementia. A mental health evaluation can be conducted to determine if any psychiatric conditions are playing a role in a patient’s case.
Specific diagnostic criteria exist to separate cases of dementia from instances of mild cognitive impairment. These criteria require that delirium be ruled out and that a patient have multiple symptoms that are showing signs of worsening over time and are affecting their daily life.
What Are the Treatments for Dementia?
Dementia can be a challenging condition to treat. Except in cases of reversible dementia, which are far from the norm, the damage to the brain cannot be reversed. As a result, the goal of treatment is usually to try to slow the progression of dementia while reducing and managing symptoms.
When a known underlying condition is present, treatment is likely to focus as much as possible on ameliorating that condition. That said, some conditions are more effectively treated than others.
Treatment With Medications
Pharmacotherapy, also known as treatment with medications, can be employed for some patients with dementia.
For Alzheimer’s disease, for example, there are drugs available that work to maintain higher levels of acetylcholine in the brain. These drugs offer medium-to-long term symptom relief for about one-third of patients and short-term relief to another third. One-third of patients find no benefit, and some who benefit may find that side effects are significant.
Other drugs to try to manage hallucinations, seizures, or behavior problems are generally only used as a last line of care because they can create the potential for side effects, including a heightened risk of accidents and falls.
If patients have coexisting conditions that are contributing to their symptoms, such as depression, medications to treat those conditions may be prescribed to attempt to improve quality of life and slow the progression of the disease.
Promoting Patient Support and Safety
While it may not be what is traditionally thought of as a medical treatment, thoughtful patient support is a key aspect of care for people with dementia. Though it does not in any way attempt to cure dementia, improving patient safety and support can play a critical role in patient quality of life and managing their symptoms.
At the most basic level, dementia is a function of damage to the brain, but the daily experience of symptoms is also a function of how patients respond to their environment. Considerable experience has demonstrated that thoughtful attention to patient surroundings and day-to-day routines can help people with dementia cope with their condition.
Cultivating a supportive environment often starts by creating a familiar living situation that fosters a patient’s orientation. A bright room, ideally with natural light, can improve mood and recognition of the time of day. Large clocks, calendars, labels, and mild stimuli, like a radio in the background, can improve awareness as well.
Steps should be taken to create a safe environment. This includes reducing potential hazards that could trip a patient. Night lights, including those with motion sensors, can reduce the chances of falls. Working with an occupational therapist or physical therapist may help in facilitating daily activities while reducing injury risk.
Stability in routines and frequent reminders are often beneficial for patients with dementia. Caregivers can explain these routines each day before beginning them, helping to orient the patient’s expectations and reinforce familiarity with each day’s rhythm. To serve this goal, caregivers can wear name tags and remind patients of their names each time they provide assistance.
While some types of activities may become more difficult as symptoms progress, patients should be encouraged to remain active and social. Light physical activity on a regular basis as well as simple yet engaging mental activity can be beneficial. Frequent social contact can prevent patient isolation and improve mood.
These measures can be tailored to each patient’s situation depending on the stage of their dementia, their symptoms, whether they have other health issues, and whether they live at home or in a nursing facility. Customizing a support and safety plan will not resolve the underlying dementia, but it can decrease troubling instances of disorientation and improve a patient’s comfort and overall quality of life.
What is the Relationship Between Dementia and Sleep?
It is well-established that sleep is critical for our overall health. At the same time, many different health conditions can interfere with sleep and lead to insomnia and sleep deprivation. For this reason, health problems and sleep can have a mutually reinforcing relationship.
Research indicates that dementia and sleep have this type of bidirectional or bidimensional association. For a number of reasons, patients with dementia often have disturbed sleep. Those sleep disruptions may worsen symptoms and the progression of dementia, and taking steps to better patient sleep may improve a patient’s condition.
Even further, people who do not have dementia may be at higher risk of developing it if they have consistent sleeping problems. Getting quality sleep may play a part in preventive care for dementia.
In the following sections, we’ll explore in more depth the multifaceted relationship between sleep and dementia and the findings of the research conducted to date.
How Does Dementia Impact Sleep?
A significant number of patients with dementia are estimated to have sleeping problems. Sleep disorders affect roughly 44% of patients with Alzheimer’s dementia or frontotemporal dementia and nearly 90% of people with Lewy body disorders including Parkinson’s Disease dementia. Vascular and other types of dementia can spur sleep disruptions as well.
There is not one single way in which dementia can negatively impact sleep. Instead, it can cause sleep disorders and disruptions in a variety of ways that depend on the type of dementia a person has and their overall health. The following sections describe some of the most common sleeping problems associated with dementia.
Insomnia and Sleep Disturbances
Many patients with dementia get less sleep, and the sleep that they get tends to be lower quality. Problems falling asleep and staying asleep can plague people with all types of dementia, and this can result in excessive daytime sleepiness. Sleeping problems can begin early in the disease progression with as many as 70% of early-stage dementia patients experiencing sleep disturbances.
One contributing factor to sleeping problems is sundowning. Sundowning describes a heightening of dementia symptoms as day transitions into night. Increasing darkness can set off bouts of disorientation and agitation that can be disturbing and that can interrupt the process of getting to sleep.
Studies indicate that people with both Alzheimer’s dementia, frontotemporal dementia, and Lewy body disorders are inclined to have a harder time falling asleep, find their sleep to be more fragmented, and to be at risk of waking up earlier than desired. These problems can contribute to an ongoing lack of quality sleep with mounting consequences.
These sleep difficulties may be related to changes in circadian rhythms of patients with dementia. Along with overall disorientation, people with dementia frequently do not have a biological clock that is well-aligned with the local day-night cycle. This can mean that their bodies don’t prepare them -- through processes like hormone production and body temperature regulation -- to fall asleep and stay asleep. In patients who are institutionalized, these problems can become so severe that a patient may not have a single full hour of being continuously awake or asleep during an entire day.
Hallucinations can make getting to sleep difficult for patients with dementia, especially those with Lewy body dementia. During the day, people with LBD also frequently experience “sleep attacks,” in which they feel a sudden and overwhelming urge to sleep and may doze off without warning. These sleep attacks can pose serious health risks and affect around 50% of people with LBD.
When people with dementia cannot sleep, they may be inclined toward outbursts or other disruptive behavior like yelling. They may also get out of bed and be active, increasing the potential for falls or other accidents.
There is a significant association of dementia with obstructive sleep apnea (OSA). OSA is a breathing problem defined by apneas, which are temporary pauses in breathing, that occur while a person is asleep. These apneas happen because the airway, located in the back of the throat, becomes blocked.
Research has found that 40% of patients with Alzheimer’s dementia have OSA, and that figure is higher -- 70% -- for those who are institutionalized. Exact figures are not available, but estimates place the prevalence of sleep-disordered breathing, including OSA, between 20% and 70% for people with Parkinson’s Disease dementia. Rates of OSA are also elevated in people who have vascular dementia.
OSA and sleep-disordered breathing can have major repercussions for sleep and overall health. People with OSA suffer from regular awakenings in the night and appear to have lower sleep quality than people without the condition, leading to notable daytime sleepiness. OSA has been linked to a handful of serious health problems including cardiovascular issues like heart attack, stroke, and high blood pressure. Studies have also found that people with OSA have an elevated risk of depression.
REM Sleep Behavior Disorder
Another way that sleep can be disrupted in patients with dementia is through a sleep disorder called REM Sleep Behavior Disorder. This condition is a type of parasomnia, and it has been strongly correlated with Lewy body dementia and Parkinson’s Disease Dementia.
Rapid eye movement (REM) sleep is the last stage of the sleep cycle. During this stage, it is normal to have intense dreams, but the body remains still as the intensity of brain activity increases. In REM Sleep Behavior Disorder, a person does start to move and may try to act out what is happening in their dreams. This can involve sharp physical movements like punching, kicking, and getting up out of bed.
REM Sleep Behavior Disorder can cause disruption and distress to anyone who is nearby, including people who share the bed or sleep in a nearby room. People who experience this condition may be wary of going to bed for fear of these episodes. Depending on a person’s movement, they can also be at a heightened risk of injuring themselves or others when experiencing REM Sleep Behavior Disorder.
Restless Leg Syndrome
About 15% to 20% of patients with Parkinson’s Disease dementia experience Restless Leg Syndrome (RLS). RLS in these patients can be exacerbated by certain medications that are often prescribed for treating Parkinson’s Disease.
RLS is a sleep disorder in which a person feels a strong compulsion to move the legs when they try to rest. People who have RLS have a harder time getting comfortable, falling asleep, and staying asleep through the night.
Coexisting Conditions and Medications
There are many circumstances in which the sleep of people with dementia is negatively affected by other medical problems or by medications that they take for dementia or for those other medical conditions.
Dementia is more common in older adults who already face challenges related to the relationship between aging and sleep. Older age often is accompanied by physical problems like pain that have established negative effects on sleep. Older adults may struggle with mental health issues, including grief and depression, that contribute to sleep disturbances.
Prescription drugs that are used to treat many conditions common in the elderly can harm sleep. These include drugs for blood pressure, lung problems, inflammation, and thyroid conditions to name a few. Drugs for treating dementia themselves may exacerbate sleeping issues. These effects may be amplified for patients who take multiple medications at the same time.
How Does Sleep Impact Dementia?
Sleeping problems have long been recognized as a common issue among people with dementia, but recent research has increasingly highlighted the finding that poor sleep may itself cause, contribute to, or worsen dementia.
For anyone, sleep problems can lead to reduced attention span and cognition. It can harm our mood and overall emotional well-being. For people with dementia, these impacts may be heightened as they reinforce the already difficult situation caused by the condition’s progression. In a negatively reinforcing cycle, the severity of dementia appears to increase sleeping problems that can then exacerbate symptoms. Not surprisingly, then, researchers have found that bad sleep is correlated with more intense symptoms and decreased quality of life in people with dementia.
For people who do not have dementia, getting too little sleep may be a risk factor for developing the condition. In a study conducted by researchers at the U.S. National Institutes of Health (NIH), healthy people who experienced a full night of sleep deprivation had a notable increase in beta-amyloid in the brain. This beta-amyloid was found especially in parts of the brain -- the thalamus and hippocampus -- that are associated with early stages of Alzheimer’s disease. While this is early-stage research, it provides insight into one possible mechanism by which sleep deprivation may contribute to a raised risk of dementia.
In addition to total sleep time, studies in older adults have found that fragmented sleep can increase the risk of cognitive impairment and dementia. Interestingly, sleeping too much has been associated with dementia risk as well.
OSA may be a mechanism by which a person’s risk of dementia can increase. In a study conducted in Taiwan, people with sleep apnea were found to have a 1.7 times greater risk of developing dementia.
On the whole, there is still a great deal to be learned about the connections between the different types of dementia and sleep. Dementia can contribute to sleeping problems, and poor sleep may contribute to dementia. The nuances of that relationship will continue to be revealed with further research. For example, it may be that certain aspects of brain chemistry serve as an underlying contributor to both sleeping problems and dementia risk.
For the time being, though, it is safe to say that getting better sleep is a priority for people with dementia and for healthy people who hope to avoid cognitive decline. While much is left to be discovered, evidence to date indicates that good sleep may help protect against dementia.
How Can People With Dementia Get Better Sleep?
Given the degenerative nature of dementia and how it can complicate daily tasks and self-care, improving sleep for people with this condition can be complicated. There is no single approach that works for all patients, and the process may require trying different tactics to find what offers the most benefit, even if that benefit is only incremental.
The following sections describe some of the potential steps and strategies that may help people with dementia get better sleep.
Work With Health Professionals
Doctors, nurses, mental health counselors, occupational therapists, and physical therapists are examples of some of the health professionals who can play a role in helping dementia patients improve their sleep.
Maintaining communication with the patient’s doctor can be a big part of offering symptom relief and sleep help. A doctor can keep an eye on the progression of the disease and monitor the patient’s medications to reduce potential negative impacts on sleep. For example, some drugs used for treating Alzheimer’s disease can cause insomnia, and a doctor can adjust their dosage or dosing schedule to decrease sleep disruptions.
The doctor can prescribe tests, including actigraphy and polysomnography, that can keep a closer track of a patient’s sleep problems. Other testing can be prescribed to identify sleep disorders or coexisting conditions that affect sleep.
In many cases, treatment for sleep problems entails treating an underlying condition. Examples include using positive airway pressure (PAP) devices to treat sleep apnea. Studies indicate that PAP machines may slow cognitive decline in patients with dementia and OSA. In patients who cannot use a PAP device, mandibular advancement devices can be considered even though they have not been evaluated in specific research trials for people with dementia.
Other underlying problems that can be the focus of treatment include Restless Leg Syndrome, REM Behavior Sleep Disorder, depression, and pain. Medications or non-pharmacotherapy frequently can reduce symptoms of these conditions.
A doctor can also offer referrals to other specialists that can provide help. A psychiatrist can work with patients who have concurrent mental health problems like depression. Physical therapists and occupational therapists can assist in developing routines that foster familiarity and reduce safety risks. In many cases, these therapists can work in conjunction with nurses or health care aides that provide patient care either in the home or in a nursing home.
Bright Light Therapy
Bright light therapy, also sometimes called BLT or just light therapy, uses high-powered light exposure to try to resolve problems with a patient’s circadian rhythm. Light therapy is generally free of any major side effects, and some research indicates that it may help people with dementia, especially when used along with melatonin.
Even though light therapy rarely has side effects, patients or caregivers should talk with a doctor before beginning to use a light therapy lamp.
Melatonin is a hormone that is normally produced by the body as day turns to night. This hormone is a natural promoter of sleep, but its production can be thrown off when people have circadian rhythm disruptions.
Research about melatonin supplements in people with dementia has had mixed results, but there is some indication that it may improve sleep and reduce symptoms. Some of the most compelling research has used melatonin supplements in conjunction with bright light therapy. Most patients who take melatonin report few side effects.
As with light therapy, it is recommended that patients speak with their doctor before starting to take melatonin supplements to review the benefits and downsides of this treatment.
Complementary and Alternative Medicine / Integrative Medicine
Complementary and alternative medicine (CAM), also sometimes called integrative medicine, draws on treatment approaches that are not a standard part of the western medical system. It may include things like the use of natural products such as herbs and plants, or it can use non-traditional interventions like acupuncture or meditation.
In most cases, research studies for CAM therapies are very limited. However, most of these therapies are well-tolerated and may pose limited risk to patients. As with all treatments, consultation with a doctor is recommended before starting any type of CAM therapy. A doctor can review potential benefits and risks and can discuss methods for tracking the effectiveness of any specific therapy.
Anyone looking to improve their sleep is wise to give serious consideration to their sleep hygiene. Sleep hygiene encompasses the way that a person sets up their sleep environment and their daily sleep-related habits.
Given the general importance of environment and routine for people with dementia, a focus on sleep hygiene can fit well into creating a context of patient support and safety. A research study that trained staff in group homes to help dementia patients with sleep hygiene found that total sleep and sleep efficiency was improved. Added benefits of sleep hygiene education are that it does not have side effects and that it can be combined with any other treatments for sleeping problems.
Steps to enhance sleep hygiene can be broken down into two categories: the sleep environment and sleep-related habits.
For people with dementia, a positive sleep environment avoids causing disorientation, promotes safety, and eliminates barriers to sleep.
No one has complete control over their sleep environment, including people with dementia, many of whom may live in assisted living facilities. But family and care staff can work together to optimize whatever elements of the sleep environment that they can.
- Comfortable bed and bedding: whenever possible, work to make sure that the patient has a comfortable mattress as well as pillows, sheets, and blankets that make them feel supported and cozy.
- Reduce safety hazards: keep walkways free of things that could trip a patient, including bulky rugs or electrical cords. Working with an occupational therapist can help optimize the patient’s environment to decrease safety risks.
- Control light: some light, such as light on a motion sensor that can illuminate a patient’s path if they have to get up in the night, can be useful. But too much light can be disruptive to getting to sleep. Avoid bright lights, bare light bulbs, and work to reduce shadows that are produced by lighting in the room.
- Find a good temperature: work with the patient to identify a bedroom temperature that feels comfortable to them and won’t be a distraction when they try to get to bed.
Habits throughout the day, including those in the immediate lead-up to bedtime, can affect how easily a person can get to sleep.
- Limit naps: napping can create sleep disruptions and prevent proper circadian rhythm alignment. Napping close to bedtime can make it difficult to fall asleep. As a result, try to keep napping during the day to a minimum.
- Promote physical activity: daily exercise can have beneficial effects for people with dementia. Physical activity can increase a patient’s heart rate without being rigorous or threatening their safety. A physical therapist can help design or oversee a program of regular physical activity.
- Find social outlets: it helps people with dementia to stay social rather than becoming isolated. Social activities can engage the mind, build personal connections, and reduce the inclination to take daytime naps.
- Create daylight exposure: access to sunlight can help a patient stay oriented with the time of day and can work to support proper alignment with the day-night schedule.
- Have a fixed time for bed and waking up: a clear schedule helps patients’ bodies adjust and prepare for sleep. A consistent schedule also supports better orientation for people with dementia.
- Design a pre-bed routine: again, routine is beneficial for dementia patients, and a sequence of steps that prepare for bed can signal to the body that it’s time for sleep.
- Limit alcohol and caffeine: alcohol can worsen dementia symptoms and can negatively impact sleep. Caffeine is a stimulant that makes it harder to sleep, especially if it is consumed in the hours leading up to bedtime.
How Does Dementia Affect Caregivers of Patients?
The focus of this guide thus far has been on people who have dementia. But it is critical to recognize the essential role that caregivers play in the lives of people with dementia and the effects that this caregiving can have on a person’s well-being.
For 2018, figures from the Alzheimer’s Association state that more than 18.5 billion hours of informal care were provided by caregivers to patients with dementia. If this informal care were assigned a market value, its estimated worth would be close to $234 billion.
Caregivers are frequently family members including a spouse, children, grandchildren, or other relatives. Friends can serve as caregivers as well. Sometimes many people share the tasks of caregiving while in other circumstances the tasks may be managed primarily by one person.
While caregiving can be positive and rewarding, it can also be a heavy burden. Caregivers often directly witness the decline of a patient’s cognitive abilities and may bear the brunt of personality changes and behavior problems. Caregiving can be emotionally challenging, financially costly, and can take time away from other family, work, or social obligations and interests.
Because of this, caregivers frequently suffer from chronic stress, which can have far-reaching health implications. They may delay care for their own health issues in order to continue caregiving. They are at higher risk of developing problems with depression and anxiety.
A predictable consequence is that caregivers regularly report having sleep problems. One study of caregivers for patients with dementia found that two-thirds said that they had some type of sleep disturbance. Sadly, continued lack of sleep can worsen health and may hinder a person’s ability to provide as high a level of care to loved ones. In a cruel twist, as we described in the section on dementia and sleep, these sleep problems may also increase the propensity that caregivers themselves could develop dementia in the future.
How Can Caregivers Get Better Sleep?
The extensive demands that are placed on caregivers can make it hard for them to make self-care, including sleep, a priority. However, taking even small steps may be beneficial and can improve resilience to manage caregiving and their own health.
As with anyone who is suffering from sleeping problems, a useful starting point is talking with a doctor. If the sleep issues are being caused by another health issue, the doctor may be able to recommend treatment to address that underlying cause.
Enhancing sleep hygiene can be of tremendous benefit to caregivers, who, like patients, usually have areas in which they can better their sleep environment and routines. Our article on 15 Tips to Improve Sleep Hygiene offers concrete steps that caregivers can take to make it easier to fall asleep and stay asleep. With the high emotional burden of caregiving, meditation may be useful in managing feelings and combating chronic stress while at the same time supporting healthy sleep.
Many caregivers can find time for self-care by seeking out resources for respite care. Respite care is caregiving offered by others that provides the primary caregivers an opportunity to focus on other needs. Respite help may be available through referrals from doctors or from national and community organizations, including some that are listed in the final section of this guide.
Learn More About Dementia and Sleep
- Eldercare Locator: Eldercare Locator is a service of the U.S. Administration on Aging that helps connect older adults and their caregivers to useful local services in areas such as housing, transportation, legal rights, and more.
- ARCH National Respite Locator. The ARCH National Respite Network and Resource Center works to help families in need of assistance with care for a loved one. The National Respite Locator helps people find services in their area.
- MedicAlert® + Alzheimer's Association Safe Return®. This program is designed to help rapidly find and assist dementia patients who wander away and cannot be found. It is a 24/7/365 service that is available nationwide.
Information About Dementia
- The National Institute on Aging (NIA): Understanding Memory Loss. The NIA, a component of the NIH, offers this booklet to better understand different types of memory problems including mild cognitive impairment and dementia.
- Alzheimer’s and related Dementias Education and Referral (ADEAR) Center: The ADEAR Center, coordinated through the National Institute on Aging, shares essential information for people with dementia as well as their caregivers and doctors. ADEAR can be reached by phone, mail, and email.
- Alzheimer’s Society. This organization, based in the UK, offers information about dementia as well as tips and support for caregivers. The Alzheimer’s Society also supports research and describes active areas of study.
- American Academy of Family Physicians (AAFP): Brain Training for Adults. This program from AAFP offers suggestions for maintaining and improving cognition for adults.
- American College of Preventive Medicine (ACPM): Brain Health Course. This course, developed by ACPM in coordination with the Centers for Disease Control and Prevention (CDC), is meant for health professionals and covers important topics in reducing the risk of cognitive decline.
- The Association for Frontotemporal Degeneration (AFTD). AFTD is an organization dedicated to helping those affected by this particular type of dementia. They have resources for newly diagnosed patients that address living with the condition and taking part in research studies.
- The Parkinson’s Foundation: This nonprofit distributes information about Parkinson’s Disease including about how to cope with the condition, find quality medical care, and become informed about new directions in disease research.
- American Sleep Apnea Association (ASAA): This group works to reduce the burden of sleep apnea. ASAA promotes research, distributes information, and works to assist people who cannot afford medical equipment for sleep apnea treatment.
Restless Leg Syndrome
- Restless Legs Syndrome Foundation (RLSF): The RLS Foundation is a nonprofit that works to enhance understanding of RLS, inform people about available treatment, and support research about the condition.
Depression and Anxiety
- Anxiety and Depression Association of America (ADAA): Support Groups: The ADAA offers various types of support, and this page links directly to support groups for people affected by anxiety and depression.
- UCLA Health: Caregiver Training Videos. At this page, caregivers can access a series of videos that focus on specific aspects of caring for a person with dementia.
- University of California Television: Sleep and Aging: This video covers key topics related to aging and sleep and features Dr. Jose Loredo, a doctor who specializes in sleep medicine at the University of California San Diego.