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5 Responses to “I Want to Go Home” with Alzheimer’s

by Leona Small

Navigating the challenges of Alzheimer’s disease can be emotionally and mentally taxing, both for those diagnosed and their caregivers. One common expression that caregivers may encounter is “I want to go home,” even when the individual is already in their familiar surroundings.

I heard nursing home residents say “I want to go home” countless times during my time working as a social worker in a long-term care setting. Nobody really wants to be in a nursing home, so this was always a difficult conversation to have when someone of sound mind was expressing a desire to go home.

However, when someone with Alzheimer’s disease said “I want to go home,” I had to respond very differently. This would happen more frequently around mid to late afternoon when shift change would happen and when most older adults remember “going home” from their working days.

In this article, we’ll explore five compassionate and effective responses to this poignant plea, offering insights and strategies to help both caregivers and their loved ones cope with the complexities of Alzheimer’s disease. We hope you find these to be helpful suggestions in creating a positive environment for dementia patients and dementia caregivers alike.

5 responses to 'i want to go home' with alzheimer's disease feature image of someone with dementia with his hand on his head

Why Do Dementia Patients Say, “I Want to Go Home?”

People with Alzheimer’s disease or other forms of dementia frequently express a desire to “go home.” This is common among patients at healthcare facilities and assisted living facilities, and especially common among dementia patients in a memory care facility. It is a well-known symptom of time-shifting and can be disturbing for anybody, particularly family members. It isn’t easy to know how to respond in the right way.

The person with Alzheimer’s often would not recognize where they even were. They just knew they weren’t in their own “home.” This expression is not limited to nursing home residents, either.

People with Alzheimer’s legitimately already in their homes could be saying this as well. What is happening then is they are not in the “home” that they remember; therefore, it’s unrecognizable to them.

Alzheimer’s disease and dementia affect the brain, causing a person’s perception of the world and of their own life to change.

As a result, “I want to go home” can be a desire for warmth rather than a request to go anywhere.

a model of the brain

Short-term memory loss is the first symptom of Alzheimer’s disease. As a result, “home” might relate to long-term recollections of times and locations where the individual felt safe. They may recall childhood memories of a childhood house that no longer exists.

“Home” might also refer to a desire for something comfortable. Alzheimer’s patients may feel like nothing is familiar anymore due to memory loss. They could miss the closeness of family life, and wish to be around a family member that died years ago. As a result, individuals may associate “home” with feelings of familiarity and belonging.

In this situation, “home” most likely does not refer to the person’s present residence or residence before admission to a care facility. Instead, it might refer to a time in the past when they felt safe and content.

“Home” might be a yearning to rekindle a relationship with one’s childhood. That was the period of their lives when they felt the most secure, intimate, and comfortable for many people. This is most likely what your loved one is trying to say.

Alzheimer’s patients may feel as though nothing is familiar anymore due to memory problems. This might explain why they want to “go home.” In this case, “home” might mean “pleasant and familiar” things.

Is Sundowning a Factor?

an older man needing dementia care sitting in a chair in a nursing home looking concerned

Late-day confusion, also known as sundowning, is a condition that causes dementia patients to become restless or confused in the late afternoon. The phrase “sundowning” in medical terms refers to a condition of utter confusion that occurs late in the afternoon. This too was a regular occurrence in the nursing home, and is well known by many dementia caregivers working in a memory care center.

Sundowning can result in various behaviors, including disorientation, anxiety, anger, and disregarding orders. The patients might start pacing or roaming about the residence when the sun sets. There are ways to prevent sundowning, but they don’t always work.

Sundowning isn’t a medical condition. It’s a set of symptoms that appear at a certain time of day. People with Alzheimer’s disease and other kinds of dementia may have these characteristics. This behavior’s specific cause is unknown. However, it is known to cause uneasiness among patients, and they might want to “go home.”

So, sundowning is a factor in why patients might want to ‘go home’.

This means that they want to avoid uneasiness and go to a location that they find familiar and comfortable. You can help by setting an adequate sleep schedule for them and helping them stay away from mid-day naps. Reducing the background noise can also help with sundowning.

How to Respond to “I Want to Go Home”

a childhood home where mom lives with a white picket fence and a leaf covered lawn - an inviting place to spend time

I can tell you right now there is no magic answer to this question. The response that works for one person may not work for another. On top of that, what works one day may not work the next day, and what works for a few weeks may not work long-term. It’s a delicate balance of trying to navigate to the right answer without inducing more anxiety.

Following are some general guidelines.

1) Meet Them Where They Are

There’s a saying when dealing with Alzheimer’s patients – “Meet them where they are.” The old method of trying to ease someone’s anxiety with dementia was to “orient them,” tell them where they are and why they’re there. That approach fails a lot. It’s not their reality and they think you’re lying to them. It often leads to more anxiety for someone with dementia or alzheimer’s disease, not less.

Often, the person with Alzheimer’s disease is living in the past. Meet them there.

Try to come up with some creative questions that need answering. You might, for instance, inquire about your loved one’s early recollections or glance at old family photos in a photo album together. It might be soothing to reminisce about childhood and the home where one grew up.

Meeting them where they are, focusing on safety and assurances, and responding to their requests’ emotions are one of the most compassionate things you can do. The objective is to alleviate your senior’s tension or anxiety so that they may let go of the concept. 

Assisting them in calming down allows you to assess if their behavior is being driven by displeasure, pain, or a physiological need.

a dementia patient in a skilled nursing facility talking to a compassioante care giver

2) Try Affirmation

You might also use affirmation therapy to help them feel better. By asking questions that assist your loved ones in understanding their feelings, you can affirm their feelings and experiences. This might help your loved one in coping with the loss of their sense of security.

The following are some examples of possible questions:

  • What was it like growing up in your childhood home?
  • Do you long for it?
  • What did you like most about your household?
  • What was your favorite dish prepared at home?
  • What was the fragrance like in the house?
  • Did you have to share a room with your siblings when you were younger?
  • Did you have a favorite childhood stuffed animal?
  • Who was the family member you felt the most comfortable around?

Try expressing your sentiments in the same way that your loved one does. “You must wish you were at home right now,” you may say, for instance. This might make the other person feel as though you know what they’re going through. That may be reassuring.

Here are the top things you can use to calm them down.

3) Reassure Them

a family member encouraing someone receiving dementia care in a nursing home to take a deep breath and stay calm

The urge to return home is probably the same as anyone’s if they find themselves in an unusual and absurd situation. Assure the person verbally, and if it feels right, with arm touches or physical affection. Assure them that they are safe. It may assist in reassuring the person that they are still loved. They may live in a different location than before, and they need to know that they are being cared for at that moment.

I remember one individual in particular who would always ask to go home around 3pm when shift change happened. Her source of anxiety? She needed to get home in time to meet her kids getting back from school. Of course, her children were probably grandparents at that point, but that didn’t matter. It was not her reality. Assuring her that someone was already home to meet the kids sometimes worked.

Approach your elderly relative in a pleasant, relaxed, and peaceful manner. If they enjoy hugs, this is an excellent moment to give them one. Touch can be powerful. Others may enjoy gentle arm or shoulder rubbing or simply having you stay with them.

Giving them a calming blanket, therapeutic doll, or cuddly toy such as a fidget muff is another method to provide extra warmth and comfort.

4) Validate and Distract Them

It is a useful dementia care method to be able to divert and distract. It’s a talent that improves with practice, so don’t give up if your first few efforts aren’t great.

To begin, acknowledge and validate their feelings. Say something like “OK, we’ll go shortly.” or “That’s an excellent idea.” You can also say, “We’ll go as soon as I finish washing the dishes.”

Because you’re not telling them they’re incorrect, this helps to settle the atmosphere.

Redirect and divert them next. After they’ve agreed, gently refocus their attention. This diversion should lead to enjoyable and entertaining activities that divert their attention away from their desire to return home.

a care giver pointing to something outside a window while standing behind a man in a wheelchair in a skilled nursing facility

For instance, you may gently grasp their arm and go down the corridor together to a large window or the kitchen while saying, “OK, we’ll go shortly.” Outdoors, point out some of the lovely birds and plants, or provide food or drink they enjoy.

Later, you can switch to a different activity part of their everyday regimen. “OK, let’s grab your sweatshirt so you won’t be chilly when we walk outdoors,” for example. Then, while you’re both walking to get the sweatshirt and conversing about something enjoyable, stop for a cup of coffee or tea or do things they enjoy.

Alternatively, inquire about their residence. After some time has passed, switch the conversation to a neutral subject.

Always have a picture book (ASIN B09F89YSKF) on hand. Anxiety can be relieved by looking at images from their history and being given the opportunity to remember. It’s probably wise to refrain from asking inquiries about the photo or the history and instead focus on making compliments. You might also try distracting them with food, music, or other things, such as going for a stroll outside.

5) Take Them Outside

No matter how hard you attempt to comfort or refocus the loved one, they will often struggle to let go of the need to return home. You may need to promise to drive them home and take a short car ride if this occurs.

Test how long it takes to get them to go home without protesting or propose a trip to the ice cream parlor, pharmacy, or supermarket to divert their attention. Even if taking them out or getting into the car isn’t possible, going through the motions of preparing to go might be comforting. This will demonstrate that you empathize with them and are assisting them in achieving their objective.

a memory care center patient spending time outside in a positive environment with his loved ones

Remember that not everything you try the first time will succeed. And even if something succeeds once, it may or may not work again. However, getting ready tasks provide additional opportunities to divert their attention and shift attention to something else. Maintain a cool, adaptable, and creative demeanor as this skill becomes easier with experience. 

What Not to Say

an older woman having a hard time accepting her current reality with her head in her hands

Don’t Say, “You Are Already Home.”

The few times I tried this I was met with an angry “Oh, get out of here!” or “You’re lying!” (I also got a tutorial from my supervisor!)

The term ‘home’ may refer to more than just where a person with dementia currently resides. As previously stated, when a person with dementia requests to go home, they usually refer to the feeling of being at home rather than the physical location.

‘Home’ might conjure images of a time or place where people felt safe, protected, calm, and content. It might also be a location that does not exist. It’s preferable not to argue with the individual or attempt to persuade them to return home. If they do not recognize their surroundings as ‘home’ at that time, it isn’t home for them.

Make an effort to comprehend and accept the sentiments behind the desire to return home. Find out where they call ‘home,’ as it may not be the same as the previous location they resided. It might be the location of their first home or a location from their distant childhood past.

a man standing on a rock lookinng out at a lake with mountains in the distance - a wonderful way to spend hours of time when able

People with dementia frequently describe ‘home’ as a nice, serene, or beautiful setting in which they are content. They might be encouraged to discuss why they enjoyed their time there. This may provide insight into what they require to feel well and comforted.

How to Ease Their Anxiety

Because of feelings of worry, uncertainty, melancholy, or dread, a person with dementia may wish to ‘go home.’ Is the dementia patient joyful or sad right now? It may be feasible to figure out why they are dissatisfied. If they cannot explain why this happened, a staff person or another patient may be able to help.

Someone with dementia, like other individuals, may act out of character in front of their loved ones when they are in a poor mood or having a terrible day. When people aren’t visiting them at the care facility or making phone calls to them, does the person with dementia asks still about going home? Do they appear to be settled in any other way? The personnel at the facility may be aware of this.

If you can determine why they are unhappy, you can try helping them with that. You can cheer them up, change their environment, and help them stay happy most of the time. You can also offer to play science supported games for dementia patients to help keep them active and their mind focused on a task. This will ease their anxiety.

People with dementia frequently request to “go home” when they are confused or uneasy with their environment. If you’re caring for a loved one struggling with dementia, consider using a calm approach, distracting them, and validating their feelings to help them relax.

an older woman in residential care listening to music via headphones while her family surrounds her

Summary and Further Reading

Almost every dementia caretaker has heard this painful request from their loved ones. This simple phrase jars them even if they are currently at home or are trying to embrace their new surroundings following a transition to long-term care. For various people, home means different things, but dementia tends to elevate this idea to a new and perplexing level.

Even if they are already at home, Alzheimer’s patients frequently express a desire to “go home.” This might be a manifestation of their insecurity.

They may yearn for a simpler moment in their lives, such as their youth. Asking your loved one to talk about personal experiences will help them process their feelings. It might also assist in supporting their feelings by letting them truly understand why they may wish to go home.

Remember to stay calm, acknowledge the massive disruption to the daily routine they’ve been used to for so long when adjusting to life in a new place, take a deep breath when you feel yourself getting frustrated in the moment, avoid contradictions, refrain from giving unnecessary advice, and offer support as best you can as this is a challenging time for everyone.

a close up of two sisters holding hands offering each other support - the only answer when dealing with difficult times

Additional Resources

The following books might help you understand Alzheimer’s disease and dementia a bit better, and in particular, how to help the one you love when they ask you the same question over and over again.

Final Questions

Have you had to address “I want to go home” with a loved one who has Alzheimer’s disease? What did you do? Did it work? Do you know of any other great tips we should include?

Let us know in the comments section.

About the Authors

Leona Small is a freelance writer and former caregiver. She has experience working with people with Alzheimer’s Disease and related dementias and has spent years working alongside both patients and caregivers in Hospice. Additionally, she’s worked as a Professional Organizer helping people and families to purge, organize, manage, and prepare for various life transitions such as moving, downsizing, and the passing of loved ones. Her passions include writing about healthy aging, innovative resources to help older adults and caregivers, and traveling.

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