How Memory Loss Progresses Throughout the Stages of Alzheimer’s Disease
In the early stages of Alzheimer’s disease, a person may experience short-term memory loss, forgetting information they recently learned. In these early stages, a person with Alzheimer’s disease may ask for the same information repeatedly or forget important dates and events. It’s also common for a person to forget where they left items such as their car keys or wallet. As a person with Alzheimer’s disease progresses into stages (stages 1-7) known as mid-stage dementia, major memory deficiencies become more apparent. People in stage five begin to forget important bits of information that impact their daily lives, such as their phone number or home address. In this stage, patients may begin to experience disorientation to place and time – unable to identify where they are or what time of day it is. As they progress into stage six, cognitive deficits become increasingly severe, with patients forgetting the names of family members and close friends. These patients have little memory of recent events and information, and at this stage, they also begin to have limited memory of their earlier lives (long-term memory loss). They may forget how to use common, everyday items like a fork or comb. Stage six is particularly difficult as patients often experience anxiety, agitation, and even delusions, such as believing that family members or caregivers are stealing from them or that a spouse is having an affair. Anxiety and agitation, even aggressive physical outbursts, may be more common later in the day, known as Sundowner’s syndrome. In the later stages of Alzheimer’s disease, patients completely lose their ability to communicate and suffer from a profound loss of physical abilities, requiring assistance with most of their activities around the clock.
How to Respond to Memory Loss and Inaccurate Memories
One of the biggest challenges caregivers and family members face is knowing how to respond to situations when their loved one can’t recall an important person, place, or event, and similar situations arising out of their loved one’s memory loss. Unfortunately, there’s no one-size-fits-all solution, as every person with Alzheimer’s disease is unique. They may progress through certain stages more rapidly or more slowly than others, and they may respond to the frustration of losing important memories differently than others. In general, you should adapt your response to your loved one’s needs, although there are a few helpful tips and suggestions that can help you respond gently.
- Never express anger. While it’s common for family members to feel hurt, frustrated, and perhaps even angry when their loved one calls them by a different name or does not recognize them, showing your frustration will cause your loved one distress. Remember that they are not doing these things intentionally.
- Keep explanations simple. A lengthy explanation can be overwhelming for a person with Alzheimer’s disease, so keep your explanations simple and straightforward.
- Use photographs and mementos to remind them. If your loved one doesn’t recognize a niece or nephew, pull out a photo album and show them a picture of the family member with others they may recognize, such as a photo of their sibling’s family. Photos and other mementos can help your loved one recall important places and valued relationships.
- When correcting an inaccurate memory, use suggestive language rather than corrective language. For example, rather than saying, “We use spoons to eat soup, not forks. That is a fork, not a spoon,” you might approach the situation with language such as, “Maybe this spoon will work better.” Corrective language can be perceived as scolding or accusatory, which can increase your loved one’s anxiety and frustration.
- Take a journey back in time. It’s common for people with Alzheimer’s disease to seem as though they’re “stuck” in a different time, talking about people, places, and events from long ago. There’s no harm in engaging in conversation about this time in her life; in fact, it may be an opportunity for you to connect with your loved one in a meaningful way as she shares memorable stories from her past.
When to Answer Honestly – and When It’s Okay to Lie
It’s during mid-stage Alzheimer’s disease when most caregivers and family members struggle with how to respond to instances where their loved one can’t recall significant events from the past, such as the death of a spouse, and whether to affirm their loved one’s beliefs or gently correct them. In some cases, correcting a loved one – telling the truth – may be distressing to your loved one. If your loved one asks to see their mother, for instance, who passed on years ago, reminding them that their mother is no longer with us could be devastating to them. “If the person says something that you know is not true or possible, try to see past what they are saying, and instead look at the emotions behind it,” the Alzheimer’s Society suggests. “For example, if they are asking for their mother, who is no longer alive, it may be that they are feeling scared or need comforting. By meeting the needs behind what is being said, it can be possible to offer emotional support while avoiding a direct confrontation over the facts.” In other cases, going along with whatever your loved one believes to be true at the time is the best course of action. In the example we discussed earlier – taking a journey back in time and engaging in conversation about a different time in your loved one’s life – there’s generally no pressing need to attempt to bring your loved one back to reality. Likewise, if correcting your loved one or reminding them about a tragic event from their past, such as the death of a parent or spouse, will result in significant distress, there are a few tactics you can use to respond:
- Distraction: If your loved one asks to see someone who has passed away, rather than remind them of their loved one’s passing, use distraction to shift their focus. For example, you might ask your loved one to tell you a story about something they loved about their mother. Other distraction techniques include engaging your loved one in an activity or changing the conversation to another subject.
- Use half-truths to satisfy the request or need: Another way to address this situation is to bend the truth a little. Rather than state that your loved one’s mother passed away years ago, you can simply say that their mother is unable to visit. When asked why, reassure your loved one that her mother is safe.
- Therapeutic fibbing: While outright lying to a loved one with Alzheimer’s disease should be reserved as a last resort, there are circumstances in which it’s an appropriate response. In cases where the other options would certainly cause your loved one great distress, lying is sometimes the best course of action. In other cases, you may resort to lying after attempting distraction techniques and bending the truth, only for your loved one to persist in their request. Don’t feel guilty about resorting to this option, a technique experts call “therapeutic fibbing.” As Daily Caring points out, “Using white lies to validate their feelings and reassure them is certainly not the same as lying for a malicious reason.”
How to Use Therapeutic Fibbing Effectively
Typically, therapeutic fibbing, also called therapeutic lying, compassionate deception or compassionate lying, is used in situations when it’s an emotional subject or a matter that’s relatively trivial. In other words, there’s no point in taking the risk of upsetting your loved one just to correct them on something that won’t impact their life, such as what model car their spouse drove in the 1980s. Keep in mind that your loved one’s memories are their current reality, so validating their feelings with therapeutic fibbing can be comforting and reassuring. When a patient doesn’t recall that their spouse has died, that is their reality. Being bluntly informed that their spouse died years ago is like hearing it for the first time, and they’ll experience all the emotions of grief all over again. If this is a topic that comes up repeatedly, bringing your loved one back to reality each time is like experiencing their spouse’s death again and again. In these situations, caregivers and family members should all get on the same page and agree on the appropriate way to respond when the topic comes up. These types of situations often warrant the use of therapeutic fibbing to avoid causing repeated, unnecessary distress and grief. Daily Caring suggests using therapeutic fibbing as a segue for a distraction activity. In one example, a person with Alzheimer’s states that they’re late for work, but they retired decades ago. Rather than inform them that they don’t have a job to go to, Daily Caring suggests affirming their feelings with a distraction by stating, “Oh, you’re right, but there’s still time as that clock is an hour fast. How about we have a nice hot breakfast before you head to work?” In this case, the caregiver has an opportunity to distract the patient with an activity (a meal). The caregiver in this situation can use conversation during the meal to discuss another activity that they’ll do after eating, setting up the next transition. When caregivers and family members use therapeutic lying to reassure their loved one, it’s common for the person with Alzheimer’s disease to soon forget the original question that was asked or what was being discussed. The benefit of therapeutic lying in this case is clear: rather than being left with feelings of anguish and confusion because they don’t recall why they feel that way, they’re left with warm and fuzzy feelings of happiness and contentment.
When Inaccurate Beliefs and Memories are Hurtful
Unfortunately, therapeutic fibbing isn’t suitable for all situations in which your loved one has inaccurate memories or misguided beliefs. Sometimes, patients with Alzheimer’s disease experience paranoia and delusions. Coupled with the frustration of misplacing belongings and household items, it’s common for these circumstances to give rise to suspicion and even hurtful accusations. A belief that her grandson stole money from her wallet is not one that you want to affirm. Of course, there are circumstances in which caregivers and family members have taken advantage of loved ones with Alzheimer’s disease, but if you’re certain an accusation is false, you’ll need to attempt to resolve the situation. The important thing in responding to these beliefs and accusations is to not take it personally, and that the disease is the cause, not your loved one. Be tolerant and patient, and respond with kindness while gently explaining to your loved one what actually occurred. For instance, if your loved one is accusing her caregiver of stealing her jewelry, you can usually resolve the situation by locating the misplaced item and explaining that it was simply misplaced. If your loved one believes that a family member has stolen an item of clothing when they actually took it to the dry cleaner, explain clearly, but gently and with kindness, that the item is being cleaned and will be returned promptly. If possible, keep records and receipts that you can use to backup your explanations. When you’re handling your loved one’s finances, the stakes are high. Be diligent about getting all the necessary legal documents prepared. Keep meticulous records and documentation when handling any financial or legal matters on behalf of a loved one. In some situations, it may be better to have a third party, such as an elder law attorney or guardian, handle such matters to avoid disagreements among family members.
Responding to Extravagant Stories
It’s not uncommon for people with Alzheimer’s disease to have “memories” of people and events that never existed. Alzheimers.net discusses a touching story (first reported in The New York Times) of a reader’s grandmother who had Alzheimer’s disease and believed that her daughter was in a relationship with a man unknown to the family. The patient created an elaborate story, including details of the man’s personality, their relationship, and even trips she believed the couple had taken overseas. So, how did the family react? They chose to play along, engaging in conversation with their loved one as she happily filled them in on all the details of this man, and relationship with her daughter, that never existed. While this solution may not be the right one for every family, in this family’s case, they felt it brought them closer. Playing along with the story didn’t bring any harm to their loved one or her daughter, who was at the center of the story. While they could have attempted to correct her and even argue with her to attempt to bring her back to reality, doing so would have surely caused confusion, frustration, and perhaps even agitation – but for what purpose? In this instance, there was nothing to gain in the long run from refusing to entertain their loved one’s reality.
Communicating with a Loved One with Alzheimer’s Disease
Communicating with a loved one who has Alzheimer’s disease is challenging in many ways, and it can be frustrating for both caregivers and their loved ones. Keep these communication tips in mind to guide you through effective communication with your loved one throughout the progression of the disease.
- Encourage your loved one to reminisce. Remembering enjoyable experiences from the past can be comforting and calming for people with Alzheimer’s, so take the opportunity to walk down memory lane and learn about the experiences they’ve had throughout their life.
- Use their name. Make sure you have your loved one’s attention by using their name and making eye contact before asking questions or communicating.
- Keep it simple. Ask only one question at a time and give your loved one time to respond. Avoid open-ended questions and questions with too many choices. If you’re working on an activity or carrying out activities of daily living, give only one direction at a time to avoid confusing your loved one.
- Use your normal tone of voice at a normal volume. Talking or giving directions loudly can come across as condescending and lead to feelings of anger and frustration.
- Avoid using negative language. Try to paint every statement in a positive light. Instead of, “Don’t use that brush,” say, “Try this comb instead,” or “This brush may work better.”
- Clarify when necessary and avoid criticism. If you’re unsure what your loved one meant, repeat their statement back to them to attempt to clarify. Avoid criticizing their mistakes or inability to remember things.
- Listen more. There’s much to be gained from talking less and listening more. Uncovering the need underneath different requests (e.g., asking to see their mother may reflect a need for reassurance and comfort) rather than taking statements at face value. Plus, listening to your loved one will make them feel valued and give them a sense of empowerment.
- Use visual cues when possible. Remembering the right words can be difficult for people with Alzheimer’s disease. When offering choices, use photos or other visual cues to help them understand and make it easier to identify their choice.
- Mind your body language. Communication isn’t just words; your body language plays a big role in how what you’re saying is perceived. If you’re feeling frustrated, your body language can give you away despite your carefully chosen words.
- Be patient and flexible. Remember, your loved one is at least as frustrated as you are by difficult circumstances. Have patience and be flexible when engaging in activities or discussion.
While every situation is different, lying to your loved one with Alzheimer’s disease is an appropriate response in many situations. Knowing the techniques for handling inaccurate memories and symptoms like delusions and paranoia will help you develop a compassionate response in every situation, validating and reassuring your loved one and offering gentle corrective explanations when necessary. Having the skills to respond appropriately will help to maintain a positive, stress-free relationship with your loved one.
Additional Resources on Communicating with a Loved One with Alzheimer’s Disease
For more insights on communicating with a loved one with Alzheimer’s disease and using techniques such as redirection and therapeutic fibbing effectively, visit the following resources:
- Communication and Alzheimer’s
- Communication Techniques for Alzheimer’s and Dementia Caregivers
- Is Lying To Someone With Dementia Better Than Being Truthful?
- When Is a Lie Okay When Dealing with Alzheimer’s?
- Alzheimer’s Caregiving: Changes in Communication Skills
- Therapeutic Fibs and Creative Communication Techniques
- Lying To Alzheimer’s Patients
- Improving Alzheimer’s and Dementia Care: Truths & Lies I Told My Father
- Therapeutic Fibbing: The Ethics of Lying to Your Loved One with Alzheimer’s Disease
- Handling Dementia Symptoms with Therapeutic Fibbing & Diversion
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