For a loved one who has dementia, the world is turned upside down. We have no way of knowing exactly what happens in the brain and with the emotions of a person with dementia, but we do have evidence of what kind of communication works best.
Each person with dementia will respond and behave in an individual fashion that may have nothing to do with their previous personality.
Jump ahead to these sections:
- What Should You Keep in Mind While You Respond?
- Do You Want to Tell Dementia Patients the Truth?
- What to Say to a Dementia Patient Who Wants to Go Home
We also know this. People with dementia have common symptoms that include problems with memory, difficulty expressing ideas, disorientation to time and place, poor judgment, anxiety, and depression.
It is common for people with advancing dementia to not remember what was said minutes before and to repeatedly ask the same question over and over again.
If your loved one is in memory care, assisted living, or nursing home care, they may ask to go home.
Both of you may have a hard time dealing with the anguish caused by this request. There may be no simple solution, but we have some tips to keep you both calm and centered.
What Should You Keep In Mind While You Respond?
Communicating with someone who has dementia is like solving a puzzle. You may have already had experience trying to communicate with your parent with dementia when they refuse help or reminding them gently about other small things.
Couch your communication in certain foundational principles until you know you have hit upon the most effective communication strategies.
As time goes on and your loved one gets worse, you may need to be flexible and try other communication methods. Let’s look at some guidelines as you respond to the request to go home.
When your loved one asks to go home, this might elicit some strong feelings in you. You may have feelings of guilt or regret. Controlling your emotions, even in the face of irritating, repeated requests, can be challenging.
But if you get upset, this will only make things worse. Deep breathing can help you gather your thoughts and control your emotions. Expressing anger can be counterproductive and will make you both feel worse.
People with dementia process language and information much more slowly. The faster you speak, the more anxious they may become. You want to impart calm, not add to the agitation.
Slowing down your speech will also slow your heart rate if you are upset. It is not always necessary to respond to every question either. Let things settle and see where they go.
Use a positive tone
Your tone matters, as the emotional tenor of your communication will likely be felt and mirrored. It can’t hurt to be positive and might help move the conversation away from a troubling topic.
Many people with dementia are distressed—probably by the confusion of trying to sort through stimuli they don’t understand.
Assess the possibility of other problems
Sometimes when a person repeatedly asks to go home, they are in discomfort. Their discomfort could be emotional or physical, or both.
Check on the possibility of pain, and make sure that all their lab results are current, especially ones that check for urinary tract infections. Urinary tract infections are common as people get older and can lead to confusion and even delirium.
A person with dementia may have difficulty communicating how they feel, so you will need to sleuth out potential problems. Your loved one may be lonely or depressed.
Talk with the care staff to determine if they have noticed behavior changes, such as increasing isolation or agitation.
Arguing or disagreeing with your loved one is likely to worsen the situation. Remember, logical and rational thought may not be possible. Your loved one is more likely to become even more agitated and insistent.
Try, if you can, to acknowledge the underlying feeling. The emotion might be distress, fear, anxiety, or longing. Look for physical cues to what is going on and focus on that.
Validation therapy is a long-standing method of communicating with people who have dementia. The validation method stresses caring and non-judgemental communication that respects a person’s emotional journey.
Reading about the validation technique might provide you with some ideas on acknowledging your loved one’s feelings.
Join Cake's monthly newsletter.
Learn all you need to know about end-of-life.
Do You Want to Tell Dementia Patients the Truth?
There is no right answer to this question. It depends on the situation. Moving a parent with dementia to assisted living can already be difficult enough and require some dancing around the truth.
Some families are not comfortable with outright lying, so they use some “workaround” strategies. For many people, this is an ethical question, as some people deserve to know what their situation is. Some things to think about as you think about this issue:
How advanced is your loved one’s dementia?
The cognitive impairment level in a dementia patient should be a primary consideration. A person with mild dementia may be able to process the truth. Those who are more severely impaired may experience extreme distress and agitation in knowing the truth.
If you tell the truth, will it make the situation worse?
Will your loved one become more agitated and upset? In this case, distraction or a partial truth could be justified.
Will your loved one understand the answer?
If their memory is so impaired that the answer will only lead to a repeating of the question, distraction from the question itself is probably the best strategy.
You alone have to decide what level of truth you are comfortable telling.
Talk with your loved one’s doctor about the disease’s progression and their recommendation on what to say and how truthful you may want to be.
If you aren’t comfortable telling an outright lie, that is OK and so is not being entirely honest. Discuss options with the rest of your family, so you all agree on consistent messaging.
What to Say to a Dementia Patient Who Wants to Go Home
There is no one right thing to say to a dementia patient who wants to go home. You may have to try several methods before finding a strategy that works. At times like these, it may be helpful to consult some books on dementia.
But, there is the possibility that nothing will work as well as you would like it to. As the disease progresses, things might get better, and going home will be forgotten.
In the meantime, have some distracting and engaging activities in mind for when your loved one asks to go home. Having something to pivot to can be a lifesaver.
Tell me about your home
A home may not mean what you assume it does for your loved one. They might be thinking of a childhood home or another place they lived when they were younger.
Going back to that place in their mind represents an important time, and you can explore it further. By getting to the heart of the matter, you have the opportunity to allow your loved one to express feelings and emotions.
You are safe here
Sometimes the expression of wanting to go home is a fear of the place where someone is. Going home represents comfort, security, and safety.
Telling a person with dementia that they are safe can be reassuring and might even bring up some specific fears about their current situation. Perhaps they aren’t getting along with another resident or staff member or don’t like the food or activities.
Let’s look at some photographs
Looking at photographs can elicit memories, and can be a distraction from the conversation at hand.
Ask questions about pictures and do your best to engage your loved one in reminiscing. Always have photographs on hand to look at. Even the same ones over and over again might work since your loved one won’t remember.
I have one of your favorite movies to watch
Viewing a funny movie or series that your loved one likes can be a great way to distract them from constant requests to go home. Have some ideas in mind, and make sure you have disks or access to the ones your loved one prefers.
We can go home later
Making this statement isn’t the truth, but it can buy you some time to engage in a distracting task like folding laundry or listening to music.
Music is especially effective with people who have dementia. Have some headphones handy and their favorite music. You might be amazed at how much your loved one will enjoy this activity, and by the time they are done, going home is forgotten.
Other simple tasks include sorting objects or simple games. Find an activity that resonates and use it frequently.
Let’s go outside
Don’t underestimate the impact of being cooped up inside with other impaired residents. You would probably want to go home too!
Weather permitting, getting someone outside for a walk or a push in a wheelchair can work wonders for their mood. Point out the birds, plants, and sky. Getting some time-limited sunlight exposure is healthy and mood-enhancing.
Responding to a Dementia Patient That Wants to Go Home
Dementia care is an unpredictable journey that requires a commitment to flexible and compassionate communication. Understandably, your loved one wants to go home and doesn’t want to be in a state of confusion.
Your job is to meet the person where they are, with the reassurance that they are safe and cared for.
- “What is Validation?” Validation Training Institute. vfvalidation.org/get-started/what-is-validation/