Dementia Caregiver Web Support

Sleep, Illness and Pain

This page reviews common sleep disturbances often experienced by person with dementia, such as sundowning or delirium, which can be caused by pain and/or illness.

Before reading the content on this page, it may be beneficial to review the following video(s) from the Office of Rural Health (ORH).

Recognizing and Managing Pain in People with Dementia 
Length- 5:52 (Link opens new window)
Pain and generalized discomfort is often an overlooked source of irritability and aggression in people with dementia. This video portrays methods for caregivers to recognize the signs of pain or discomfort, monitor pain, side effects of pain medications, and how to manage pain without medications when possible.

ABC’s of Dementia Behavior: Scenario #1
Length: 12:26 (Link opens new window)
Teri applies the ABC Model to Frank’s behavior regarding sleep disturbances. Also, pay attention to Teri's excellent communication skills. She may get frustrated, but she apologizes and works with Frank to solve the issue.

Changes in Sleep

Changes in sleeping patterns may include:

Difficulty falling asleep and/or staying asleep throughout the night

• Individuals who are unable to sleep through the night are at risk for wandering. If wandering occurs, you should take steps to ensure safety throughout your home. Refer to this section to learn more about wandering behaviors and here to learn more about ensuring safety in your home.

Daytime napping

• Persons with dementia may feel sluggish or drowsy during the day, oftentimes requiring a nap. This may leave your loved one unable to sleep at night. You may find that providing time to ‘rest without sleep’ can re-energize your loved one, and may include gentle stretching, or listening to soft music while relaxing. Incorporating daily (light) exercise in your routine may reduce fatigue as well.

“Sundowning”

• This term refers to late-day confusion experienced in persons with dementia, which disrupts the body’s sleep-wake cycle, and causes more behavioral problems late in the day.  Read more about “sundowning”  below.

Delirium

• Delirium is a medical condition that results in confusion and other disruptions in thinking and behavior, leading to either a hyper-alert state (wide awake) or a very drowsy/lethargic state. Read more about delirium below.

Tips for managing a normal sleep-wake cycle

• Maintain a comfortable temperature in his/her room
• Keep rooms dim during sleep. Keep rooms bright (i.e. open windows) during the day. This will help maintain the circadian rhythm (internal clock).
• Use nightlights if needed, but be aware of how the lights create shadows on the wall. Your loved one may focus on the shadows, causing an inability to sleep.
• Encourage your loved one to go outside during daytime hours (especially the morning) to seek sunlight.
• Maintain a regular routine of waking up, meals/ activity, and going to bed.
• Limit daytime naps if your loved one has trouble sleeping at night.
• Include exercise and other stimulating activities during the day. Be careful not to overstimulate your loved one, which can lead to problem behaviors.
• Avoid stimulants, such as alcohol, caffeine and nicotine.
• Discourage the use of electronics (television, computer, iPads) during periods of wakefulness at night.

Sundowning

While experts are not certain why this behavior occurs, factors that may cause "sundowning" include:

• Fatigue and end-of-day exhaustion (both mental and physical exhaustion)
• Disorientation caused by a disruption of the body’s circadian rhythm
• Nonverbal behaviors of others, especially stress or frustration, may be transferred to the person living with Alzheimer’s
• Low lighting and increased shadows may play mind-tricks on a person with dementia
• Problems sleeping
  
  

Tips for Managing "Sundowning" Behavior

• Ensure you as the caregiver are getting plenty of rest so you’re less likely to exhibit unintended nonverbal behaviors.
• Make notes about what happens before “sundowning” events and try to identify triggers.
• Offer a larger meal at lunch and keep the evening meal light.
• Provide a time to rest quietly in the afternoon (i.e.: listening to music or watching television).
• Reduce evening stimulation (loudness, visitors, chores, etc).
• Engage your loved one in a peaceful activity during the events, such as folding clothes, listening to soft music, gentle stretching.
• Provide a quiet space or go for a walk with your loved one if you feel doing so will not cause him or her to become agitated. Avoid the use of electronics (computers, TV, iPads) during an event.
• Turn on lights to avoid shadows
• Offer a favorite snack
• Sometimes muttering and pacing are unavoidable so try to make the environment as safe as possible

Delirium

Delirium is a medical condition that results in confusion and other disruptions in thinking and behavior, including changes in perception, attention, mood and activity level. Persons with dementia are highly susceptible to delirium. Unfortunately, it can go unrecognized because the symptoms are so similar to dementia and “sundowning”.

Symptoms of delirium include:

• An ABRUPT confusion (developing over a few days or weeks) that represents a sudden change from a person’s previous course of dementia
• Confusion that fluctuates over the course of a day
• More disorganized thinking
• Inability to maintain a coherent conversation
• Person may be hyperalert OR drowsy/lethargic
• Sudden inability to focus attention on a task that he/she was recently able to focus on

Tips for Managing Delirium at home:

• First, you should tell your loved one’s healthcare provider. This could be the first and only clue to a medical illness, pain or side effect from a medication. See illness and pain section below.  
• Create a safe and calm environment: reduce noise, bright lights, etc.
• Allow a close friend or family member to remain close to your loved one, as their company could prevent the need to medicate.
• Avoid the use of sleep medications and tranquilizers, as they could make delirium symptoms worse. Your healthcare professional may prescribe Haldol, an antipsychotic, to decrease the symptoms of delirium.

How to prevent delirium at home:

• Avoid illness
• Prevent and/or treat any pain
• Avoid alcohol, caffeine, nicotine.
• Go easy on medications. You should review ALL medications with your loved one’s healthcare provider and/or pharmacist prior to beginning a new medication. See the Medications to Avoid page  to learn about medications that can cause worsening confusion in person’s with dementia.
• Providing vision and hearing aids if needed
• Prevent dehydration
• Normalize your loved one’s sleep environment and maintain a good sleep-wake cycle

Illness and Pain

It is important to remember that pain is whatever the experiencing person says it is, existing whenever he/she says it does.

You may have heard this statement before. It’s very true. But be forewarned, persons with dementia often fail to recognize sensations as painful. Although persons with dementia experience the same painful sensations as individuals without dementia, their ability to verbally report pain (and illness) diminishes as dementia symptoms progress. In fact, pain is often manifested through behaviors such as:

• Agitation
• Anxiety
• Depression/ Sadness
• Combativeness
• Sleep and appetite changes
• Change in activity level

Or through expressions, such as:

• Moaning
• Using words such as “ouch”
• Grimacing
• Restlessness
• Guarding or bracing body parts

The same holds true for illness. You should avoid illness through smoking cessation, eating a balanced diet, encouraging regular exercise, promoting adequate hydration and encouraging vaccinations to prevent influenza and pneumonia.

Clues to an underlying illness in a person with dementia may include:

Observe for changes in bowel or bladder habits.

• Prolonged constipation could mean a blockage in the colon, dehydration, a side effect of medication, etc.
• Loose, runny stools could indicate a stomach virus, side effect of medication, etc.
• Frequent urination often indicates a urinary tract infection (UTI).

Extremity swelling

• Although foot/ ankle could very well indicate an injury, it could also indicate worsening heart failure.
• Swelling in a leg or arm, when accompanied with pain and warmth, could indicate a deep vein thrombosis (DVT, or blood clot).

Respiratory symptoms

• Cough and congestion when accompanied with fever, chest pain and chills may indicate the flu, which can lead to pneumonia.

Pain

• Sudden changes in behavior often indicate pain.

Other physical signs

• Fever, pale or flushed skin, dry, pale gums, mouth sores, or vomiting

Additional Resources

VA Resources

US Department of Veterans Affairs
VA values your commitment as a partner in our pledge to care for those who have "borne the battle." We have several support and service options designed with you in mind. The programs are available both in and out of your home to help you care for yourself and the Veteran you love.

• Caregiver Support Network
• VA Caregiver Support Line: 1-855-260-3274

Geriatrics and Extended Care Services (GEC) is committed to optimizing the health and well-being of Veterans with multiple chronic conditions, life-limiting illness, frailty or disability associated with chronic disease, agining or injury. This VA site reviews information on delirium, dementia and Alzheimer's care, decision making, home and community based services, and advance care planning, among many other important topics that may be important for you as a caregiver.

Veteran's Crisis Line Phone: 1-800-273-8255 (Veterans Press 1)

The VA does not endorse the following resources or guarantee that their information is 100% accurate.  However, you may be able to find some helpful information by visiting the following pages:

AlzOnline: Caregiver Support Online
Tips on how to begin finding help with your caregiving responsibilities.

Eldercare Locator
Find help in your community.

National Association of Area Agencies on Aging
Find caregiver resources available to you in your community.  

References: Information adapted from Alzheimer’s Association and Office of Rural Health
If you have any questions or concerns, contact us.

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