8 Ways Caregivers Can Help Improve the Safety of Loved Ones with Dementia Who are Wandering or Sundowning

Guest Author:

Melissa Lopez OTR/L ECDCP

Functional Home OT

https://functionalhomeot.com

Understanding Wandering and Sundowning Behaviors

Dementia is a group of brain diseases that cause memory, thinking, behavior, and mood disruptions. The most common type of dementia is Alzheimer’s disease, but it can also result from factors such as restricted blood flow such as after a stroke, Parkinson’s disease, fluctuations in blood pressure, and other health conditions.

As a person’s dementia progresses, they may experience a variety of changes in their behavior, notably wandering and sundowning. 

Wandering

Wandering is the act of aimlessly walking, or going from place to place. Typically this can seem to be purposeless to the observing caregiver.  The person with dementia may be moving from place to place and then back again as if they are searching but they don’t what they are looking for. 

They may move objects around in the room, rummage through doors and closets, and/or check windows and doors. When they frequently move items from place to place, their items can become lost or ruined causing agitation when they cannot find them later.

Sundowning

Sundowning is a term used to describe an overall decline in behavior or a change in cognitive function that occurs in the late afternoon or evening time. The person with dementia, initially, earlier in the day might be able to manage the stressors of day-to-day life, however as the day wears on, they seem to switch.

They may have more trouble communicating with others, difficulty coming up with solutions to problems, or become more agitated.  Sometimes a person who experiences sundowning will have an increase in wandering or exit-seeking behaviors.

Behaviors such as these can be difficult and frustrating for both the person with dementia and their caregivers due to the increased risk of them becoming lost or injured. The Alzheimer’s Association estimates that up to 60% of people with dementia will wander at some point during their disease course and 80% of people with dementia will demonstrate sundowning behaviors. 

Complex Factors Behind Wandering and Sundowning in Dementia

A variety of factors including changes in the brain, changes in behavior (sleep, nutrition, hydration, activity levels, fear, etc.), and changes to the environment can contribute to wandering and sundowning behaviors.

Structural changes to the brain can cause people with dementia to lose their sense of direction, impair their visual perception, and cause disorientation that impacts their ability to remember where they are, or why/how they got there. They can forget to look behind them, have a reduced ability to problem solve such as turning around to go back the way they had come, or forget to ask for help. 

Changes in behavior such as a flipped wake-sleep cycle or reduced hydration/nutrition can cause people with dementia to become restless, agitated, or anxious. They may forget how to communicate their needs or believe that they must “go home” or look for a loved one such as their spouse, parents, or child.

Sometimes, they become so distraught at their perseverating need that they become irate or even threatening to others who they believe are keeping them from accomplishing their need. Environmental changes can cause people with dementia to become disoriented or confused. They may have difficulty locating the bathroom or finding their room after leaving the dining room. 

8 Tips for Improving Wandering and Sundowning Behaviors

Caregivers of people with dementia can play an important role in preventing or minimizing the severity of wandering and sundowning.

They can do this by learning about dementia and its levels, creating a calm and safe environment for their loved ones, checking to be sure their needs are met, disguising exits, keeping their circadian rhythm in sync, providing regular physical and mental stimulation, improved understanding of how to communicate with their loved one, and demonstrating patience and understanding when interacting with your loved one. 

1. It is important for caregivers who care for people with a dementia diagnosis to gain an understanding of the disease.

It is estimated that there are over 100 different types of dementia each of them has its own symptoms, progressions, and challenges. Knowing the type of dementia can help the caregiver to better understand why their loved ones do what they do.

When you understand the causes behind some of the things that are encountered, you can have more reserve for empathy, compassion, and resilience when difficult things occur. As the disease progresses, the caregiver will know what to expect and may notice the progression sooner. Knowing the type of dementia and the level of its progression can help you prepare for the future.

2. Caregivers can help their loved ones by maintaining a comfortable and low-stress environment.

Simple actions such as locking the cellar door so they don’t get disorientated and fall down the stairs, removing hazards from the home such as loose rugs, or locking sharp objects in a drawer or closet can protect your loved one.

Bright sunlight in the morning and dimmed light as the day, reduced clutter, reduced trip hazards. Playing a preferred music or television show that brings back memories can keep them engaged and give them a greater sense of purpose.

3. Sometimes a person diagnosed with dementia has a personal need but they don’t know how to communicate this.

They may be hungry, thirsty, need the bathroom, or have pain. Because a person with dementia has difficulty accurately communicating their needs and wants, the caregiver may be left to guess, or “play detective.”  By making sure the needs of your loved one are addressed you can reduce agitation and wandering. 

4. Disguising entrances and exits can assist with reducing the ability of a person with dementia to sneak out from home or another building when you are sleeping or busy.

It may allow you more time to notice and redirect the person to something different. Other measures include purchasing locks for the door and placing them in a location where their loved one cannot see them or will not look for them.

Some people have had success with disguising their entrances and exits so they become invisible to a person with visual perceptual changes, a common symptom of dementia. An Occupational Therapist can help you assess your home environment, reduce frustrations that can increase agitation and wandering behaviors, and assist you with managing wandering and sundowning behaviors risk factors.

5. Other things that caregivers can do include providing regular exercise for their loved ones.

Sometimes our loved ones begin to wander out of boredom.  Extra physical activity can alleviate their craving to do something and move while providing other health benefits including improved sleep, improved ability to manage comorbidities, and minimizing the risk of decline due to inactivity. 

Exercise has been shown to help reduce anxiety and restlessness in people of all ages. Our aging loved ones are no exception.  In addition to exercising their bodies, our loved ones with dementia need to exercise their brains. Regular stimulation such as playing games, listening to music, or going for walks can also reduce boredom and restlessness experienced by a person with dementia.

Anecdotally, caregivers have observed that sundowning seems to coincide with past evening time routines such as when a person would be getting out of work, leaving for work if they worked a night shift in their past, picking up kids, making dinner, etc.

Due to a person with dementia time traveling and becoming disorientated to where and when they are in time, they may feel the need to do something that they used to do a long time ago, causing the caregiver to feel confused about the behavior.

Incorporating a routine of getting your loved one outside, especially into the early sun can help keep their circadian rhythm or biological clock in tune. During the winter months when there is less intensity of sunlight, you can supplement by opening all the windows in the rooms that your loved one is in and adding sun lamps.

As the day transitions to evening and nighttime, closing the windows can help signal them that it is time to sleep and reduce the intrusive thoughts of having to find someone or be somewhere else.

6. Technology can be our ally when maintaining the safety and health of someone with dementia.

Safety is a major concern for families who care for an aging adult with a dementia diagnosis and is a top reason for placement in the next level of care: Many smart devices have been developed to help tackle these concerns and improve the quality of life for these families such as the following:  

• GPS Tracking: GPS tracking devices and smartphone apps have been developed to monitor the location of individuals with dementia. Project Lifesaver is a community-based non-profit resource that helps provide tracking devices to persons with cognitive impairments who are at risk of wandering. They provide training to partner organizations to help find lost or missing persons. You can go to https://projectlifesaver.org/about-us/where-we-are/ for more information about this program and to look for partner organizations that service your area.

• Wearable Sensors: Wearable sensors provide biometric information to a loved one/caregiver and can detect changes in movement patterns, position (fallen on the floor) of the person wearing it,  heart rate, and sleep patterns. When these are discovered, they can notify caregivers when wandering behavior is detected.  

• Smart Home Integration: Smart home systems can be set up to automatically lock doors or trigger alarms when wandering is detected. They can also be set to turn on lights as sunset approaches or turn an appliance off. In addition, voice-activated technology allows a person to put on music or a TV show without using a remote control. 

• Communication Devices: Some devices make it easier to make a phone call or for a loved one to look in on the person with dementia to ensure safety.  

7. Communication and redirection or therapeutic fibbing can be helpful when diverting a person with dementia away from doors when exit seeking.

Many people with dementia do not have the words to express what they are feeling so what they say may not always make sense or match reality. One such example is “I need to find my mom and dad.” A person expressing the need to find their parents (who have passed) may be telling you in their way that they are scared and are looking for safety or protection.

This may also be expressed as “I need to get home” (when they are at home). Do not try to convince them of your reality but rather try to comfort, empathize, and then redirect the conversation away from leaving or needing to find someone. 

8. Being patient and understanding when your loved one is demonstrating wandering and sundowning can go a long way.

Wandering and Sundowning behaviors can be frustrating for both you and your loved one. When it seems as though you are at your limit you must take time for yourself.

Seeking out the support of community resources can be helpful, especially if you are feeling overwhelmed or burned out trying to keep your loved one safe. It is a 24/7 job that cannot be done alone especially as the person’s dementia progresses to the later stages.

Community Resources

An estimated 30,000 people with dementia live in Maine, and Penobscot County, Maine has an estimated 1,000 people living with dementia.  It is estimated, that up to 60% of these people will wander at some point during the source of their disease. Sundowning is also a common behavior affecting up to 80% of people with dementia. 

There are a number of community resources in our area that are available to help caregivers of people with dementia. These resources can provide support, information, and assistance. Some of the community resources available in the Bangor, Maine area include:

• The National Council on Aging is a national non-profit that helps fund local organizations relating to aging with dignity, health, and financial security. Each state has its own NCA that distributes resources to local organizations. The Eastern Area Agency on Aging is a local organization covering the eastern section of Maine.  They provide a range of services to older adults and their families, including support for those with dementia. They offer education and resources for caregivers, as well as respite care options. You can contact them at (207) 941-2865 or visit their website at https://www.eaaa.org/.   If you are not located in this geographical area, you can find more information relevant to your location at the following website: https://www.ncoa.org/ncoa-map

• Alzheimer's Association Maine Chapter provides education, support groups, and other resources for individuals with Alzheimer's and their families. They can also connect you with local service providers and support networks. You can contact them at 1-800-272-3900 or visit their website at https://www.alz.org/maine. This is a great resource and each state has its own chapter. You can search for the chapter nearest to you by visiting the national website at  https://www.alz.org/help-support. 

• Home health care services can assist individuals with a variety of needs, including dementia. They offer nursing care, personal care, and respite care options. Find your local home health services that come to your area through agencies that have resource lists or the Maine Senior Guide listed below. 

• Penobscot County has a program called The Wanderer’s Program. It is a database of voluntarily registered people who are prone to wandering. All officials in the county have access to this database and it contains a description, current picture, and useful information such as places they like to go. For more information or to register a loved one please visit: www.penobscotrcc.com 

• The Triad Program is a national program with a mission to promote safety for the older adult population.  It is through this program that Penobscot County in Maine is partnered with. It is described as a partnership between law enforcement, seniors, and community groups to promote the safety and well-being of older adults due to their high risk of becoming victims of fraud and abuse. You can contact them at (207) 947-4585 or visit their website at http://www.penobscotsheriff.org/triad.html. You can search the national database for a Triad partner program to find one if you do not live in this area. https://www.sheriffs.org/programs/locate-triad

• The Maine Warden Services: Provides tracking technologies to families with loved ones who are at a high risk of wandering including those who are diagnosed with dementia through their Project Lifesaver program a special partnership with Project Lifesaver, a community-based non-profit resource that helps provide tracking devices to persons with cognitive impairments who are at risk of wandering. They provide training to partner organizations to help find lost or missing persons. These tracking devices can assist with locating a registered loved one who has been reported missing cutting the time that your loved one is away from home significantly.. You can contact the Maine Warden Services Project Lifesaver program at  (207) 287-5305 for more information or to register your loved one.  If you are outside of Maine, you can go to https://projectlifesaver.org/about-us/where-we-are/ for more information about this program and to look for partner organizations that service your area.

• Maine Senior Guide: This online resource provides a directory of service providers, including home health care agencies, assisted living facilities, and memory care programs. You can search by location and service type to find options in the Bangor area. Visit their website at https://www.meseniors.com/
  

Conclusion:

In conclusion, wandering and sundowning are common behaviors for people diagnosed with dementia. This can be difficult and frustrating for both the person who is living with dementia and their caregivers. In addition, it can also be dangerous as people with dementia may get lost or injured. Caregivers of people with dementia can play an important role in preventing wandering and sundowning.

They can do this by creating a safe environment for their loved ones, providing regular exercise and mental stimulation, being patient and understanding, using technology that can help track a lost loved one and improve safety at home, and taking advantage of the multiple community resources available to them.

If you don’t live in the area of these resources, contact your local Alzheimer’s association or Alzheimer’s Federation of America to ask about programs similar to the ones described in this article. 

Resources:

1. “Dementia Statistics.” Alzheimer’s Association, www.alz.org/alzheimers-dementia/facts-figures.

2. “Dementia in Maine.” Maine Health, www.mainehealth.org/dementia/

3. Wandering and Sundowning.” Alzheimer’s Association, www.alz.org/alzheimers-dementia/symptoms/sundowning

4. Wandering Program – PRCC. (n.d.). http://penobscotrcc.com/wandering-program/

5. Turner Publishing, Inc. (2022, September 8). Maine Warden Service expanding Project Lifesaver program with grant - Maine News. Maine News. https://www.turnerpublishing.net/news/2022/09/09/maine-warden-service-expanding-project-lifesaver-program-with-grant/#:~:text=The%20Maine%20Warden%E2%80%99s%20Service%E2%80%99s%20Project%20Lifesaver%20program%2C%20in,can%20be%20activated%20if%20the%20person%20goes%20missing

6. Locate A Triad | NATIONAL SHERIFFS’ ASSOCIATION. (n.d.). https://www.sheriffs.org/programs/locate-triad 

7. The National Council on Aging. (n.d.). Www.ncoa.org. https://www.ncoa.org/ncoa-map

Read More:

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Disclaimer: These blogs, videos and any work done by Lizette Cloete OT, as a Member of Think Different Dementia, LLC, is given only as educational content and consulting work. This does not create an Occupational Therapist-Patient Relationship. The educational content and consulting work performed should not be considered medical treatment as an Occupational Therapist. The consulting work does not take the place of medical work normally performed by a licensed Occupational Therapist. Please consult a licensed Occupational Therapist for medical advice.

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. She and her husband emigrated to the USA in 1993, and currently reside in South Carolina. They have 2 daughters and one son-in-love, 4 cats, one dog and 16 chickens.

Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. Among her many accomplishments, she served on the South Carolina Occupational Therapy Association’s Board of Directors from 2008-2014. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”