CRISIS GUIDE FOR CAREGIVERS WITH ALZHEIMERS OR DEMENTIA
Alzheimer’s disease and other forms of dementia have physical and psychological effects that can make it difficult for seniors to maintain their independence. If you have a loved one with one of these diseases, it’s important to understand the changes that can occur.
Having dementia puts older adults at risk of several types of crises, including wandering, increased aggression, hallucinations and depression. This guide covers the most common crisis situations and offers tips for preventing them. It also explains what to do if one of these crises occurs and provides some resources to help you navigate the complexities of caring for someone with Alzheimer’s disease or dementia.
Wandering in People With Alzheimer’s Disease and Dementia
One of the changes that occurs in people with Alzheimer’s disease and dementia is a reduced ability to recognize familiar surroundings. This can cause them to become confused about where they are and wander away in search of a more familiar environment. According to the Alzheimer’s Association, six out of 10 people with Alzheimer’s disease wander at some point.
Causes of Wandering
It’s natural to worry about a loved one who starts wandering due to Alzheimer’s disease or dementia. Understanding the main causes of wandering can help you determine if your loved one is at risk. People with Alzheimer’s disease and dementia may wander for the following reasons:
Increased stress: Some people feel nervous when they’re around a lot of people they don’t know, causing them to wander to try to get away from the uncomfortable situation.
Previous routines: Alzheimer’s disease and dementia interfere with a person’s memory. Your loved one may wander because they want to return to familiar routines, such as going to church or having lunch with friends.
Navigation problems: People with Alzheimer’s disease and dementia may develop problems with their vision or ability to navigate different environments, causing them to get lost even in familiar places.
Looking for loved ones: In some cases, people with dementia wander because they’re looking for people they knew in the past, such as friends from school or relatives who’ve passed away.
Personal needs: People with dementia may also wander when they have personal needs. For example, someone may wander off in search of a restroom.
Signs That a Person With Dementia May Be at Risk of Wandering
Now that you know the most common causes of wandering, you may be wondering if your loved one is at risk. Although anyone with Alzheimer’s disease or dementia can develop a habit of wandering, some people present a higher risk than others. Be on the lookout for these risk factors:
Displaying a high level of nervousness or anxiety when visiting new places
Asking for family members or friends they knew in the past
Forgetting how to get around the house or navigate familiar places
Returning from activities later than usual
Making repetitive movements
Pacing around the house
Steps to Take for Preventing Wandering
If your loved one has any of these risk factors, there are several steps you can take to prevent wandering. The first is to make sure that all exits have working locks. If your loved one does start to wander, a lock can prevent them from opening a door and putting themselves in harm’s way. You should also consider adding alarms to doors and windows to alert you and other caregivers if your loved one is trying to get out of the house.
The digital age has made it much safer for people with dementia to leave their homes, as many companies now offer apps to help track their whereabouts. If you’re concerned about your loved one’s risk of wandering, consider downloading one of these apps and installing it on their mobile phone. Senior Safety App is one of the most popular options on the market. The free app monitors the user’s phone location and makes it easy to request help when needed.
Not everyone with Alzheimer’s disease or dementia has a mobile phone, so some companies offer watches and pendants with GPS tracking capabilities. These products track a loved one’s location every few seconds to every few minutes, depending on the product and its settings.
Even when you take as many precautions as possible, there’s a chance your loved one will manage to wander at some point. If this happens, you can protect them by taking the following steps ahead of time:
Hide the keys to any vehicles on your property, including golf carts, riding lawn mowers and all-terrain vehicles.
Put away tools and other hazardous items, such as cans of gasoline, bottles of lighter fluid and ladders.
Buy an ID bracelet and make sure your loved one always wears it. If possible, have the bracelet engraved with a phrase such as “memory impaired” to let first responders know they have Alzheimer’s disease or dementia.
Make sure your loved one sees an eye doctor regularly and has their eyeglass prescription updated as needed. If they wander, having the right prescription can reduce their risk of injury by making it easier to see potential obstacles.
What to Do If Your Loved One Wanders Away
If your loved one wanders, start looking for them right away. People with Alzheimer’s disease and dementia are usually found close to their homes, so check the yard, walk up and down the street, look around the corner and ask the neighbors if they saw your loved one. Don’t forget to check near shrubs and trees, as they may make it difficult to see your loved one from a distance. If you don’t find them within 15 minutes, call 911 and report them missing.
Agitation and Aggression in People With Alzheimer’s Disease and Dementia
Wandering isn’t the only concern for people with dementia and the people who love them. You may have noticed that your loved one becomes agitated or exhibits increased aggression after an Alzheimer’s disease or dementia diagnosis.
Agitation isn’t just a symptom — it’s a behavioral syndrome that causes restlessness, increased aggression, emotional distress and uncontrolled motor activity. According to an article published in Frontiers in Neurology, agitation occurs in approximately 30% to 50% of people with Alzheimer’s disease, 40% of people with frontotemporal and vascular dementia, and in 30% of those with Lewy body dementia.
Causes of Agitation and Aggression
People with dementia might develop agitation and aggression for a variety of reasons:
Pain caused by arthritis and other medical conditions
Altered sleep habits
Loss of independence
How to Respond to Agitation and Aggression
If your loved one becomes agitated or displays aggressive behavior, it’s important to respond with patience and compassion. The aggression may get worse if you show that your feelings are hurt or try to push them to behave in a different way. Let your loved one know that you value their feelings and will do everything in your power to help them.
The National Institute on Aging also recommends the following:
Allow your loved one to keep as much of their independence as is safe.
Establish a routine for your loved one to follow each day. Knowing what to expect can prevent your loved one from getting confused and becoming agitated.
Make sure your loved one gets plenty of quiet time each day. If you plan an outing, make sure you don’t have activities planned one after the other. A lack of quiet time can lead to aggressive behavior.
Surround your loved one with photographs and other mementos to remind them of the good times they’ve had.
Eliminate clutter from your loved one’s home. Too many items can make it difficult to navigate a house or apartment, leading to frustration that can cause agitation.
Make sure your loved one eats plenty of nutritious food with low levels of sugar and caffeine.
How to Get Help
If you have trouble coping with your loved one’s agitation and aggression, contact a trusted family member for support. You should also contact your loved one’s doctor to let them know about the increased aggression. Since aggression can indicate that Alzheimer’s disease and dementia are progressing, the doctor may be able to prescribe medications or recommend other treatment options.
It can be difficult to cope with agitation and aggression, especially if they occur frequently. The National Institute on Aging operates the Alzheimer’s and Dementias Education and Referral Center. If you need extra support, call the ADEAR Center at (800) 438-4380 for information on local resources.
Hallucinations, Delusions and Paranoia in People With Alzheimer’s Disease and Dementia
Even if your loved one isn’t agitated or aggressive, they may have hallucinations, delusions or paranoia as a result of their Alzheimer’s disease or dementia. A hallucination is a false perception of an object or event. You may notice your loved one experience one or more of the following:
Tactile hallucinations: These are hallucinations involving the sense of touch. Your loved one may report that someone is touching them or that they feel something moving around inside their body.
Auditory hallucinations: Auditory hallucinations are associated with a person’s sense of hearing. This type of hallucination causes someone with Alzheimer’s disease or dementia to hear things that aren’t really there.
Visual hallucinations: This type of hallucination involves seeing something that isn’t there. Your loved one may see flashing lights or tell you that they can see someone standing in the doorway even though there’s no one else in the house.
Gustatory hallucinations: Gustatory hallucinations relate to the sense of taste. It’s common for people with Alzheimer’s disease or dementia to report a metallic taste in their mouths.
Olfactory hallucinations: Alzheimer’s disease and dementia can also cause people to smell things that aren’t there. The phantom smell may be something pleasant, such as the scent of fresh flowers, or something unpleasant, such as the smell of rotting garbage.
Responding to Hallucinations
If your loved one is distraught due to a hallucination, speak in a calm tone of voice. Assure them that you love them and will protect them from harm. In some cases, distracting your loved one can make the hallucination feel less real, making them calmer. You can distract your loved one by changing the subject, suggesting that the two of you move to another room or turning on music that both of you enjoy.
It’s important not to argue with someone having a delusion. Instead of telling them, “there’s no one there” or “it doesn’t smell like flowers in here,” say something like “I know you’re smelling flowers, but I can’t smell them.” This acknowledges that their experience is different from yours without you having to lie and say you’re experiencing the same thing.
You may also want to try modifying the environment. Some appliances, such as air conditioners and humidifiers, make noises that can trigger auditory hallucinations. Turning these off or moving them to another area can help. If your loved one frequently reports seeing another person in their house, try covering up each mirror with a sheet or blanket.
Delusions in People With Alzheimer’s Disease and Dementia
Delusions are similar to hallucinations, with one key difference. While a hallucination is related to the senses, a delusion is a sincere belief in something that isn’t real. For example, your loved one may truly believe that someone is poisoning their food even if that’s not the case. Memory loss and confusion contribute to these beliefs, making delusions one of the symptoms associated with Alzheimer’s disease and dementia.
If your loved one experiences delusions, stay calm and don’t try to convince them that they’re wrong. This can cause agitation and other dementia symptoms to worsen. Instead, acknowledge the belief and let your loved one know that you care about them. Moving to another room or redirecting the conversation to another topic can help your loved one stop focusing on the delusion.
The Alzheimer’s Association operates ALZ Connected, an online support community where you can connect with other caregivers. If your loved one experiences hallucinations or delusions, you can use the message board to ask questions and get answers from people who’ve been in your shoes.
Paranoia in People With Alzheimer’s Disease and Dementia
Paranoia involves intense feelings and thoughts that are usually related to conspiracies, threats or persecution. In people with Alzheimer’s disease and dementia, paranoia is usually related to memory loss. People may feel as if other people are out to get them, especially if they can’t remember where they put things or recognize you or another loved one. For example, if your loved one forgets what you just told them, they may think that you are trying to trick them in some way.
If your loved one exhibits paranoia, try not to overreact. Even if your feelings are hurt, it’s important to stay calm, acknowledge their feelings and let them know you’re committed to protecting them. Explain to other family members that your loved one is paranoid due to Alzheimer’s disease or dementia, not because of anything a family member said or did. If the paranoia gets worse, contact your loved one’s primary care physician or neurologist for guidance.
Unfortunately, people with Alzheimer’s disease and dementia are often the targets of scams and financial abuse. If you think your loved one is being paranoid, stop and think about whether it’s possible someone really is taking advantage of them. You may want to pull copies of their credit reports to make sure no one has signed up for credit accounts in their name. Checking bank account and credit card balances can also help you determine if someone is stealing from your loved one.
Abusive Behavior in People With Alzheimer’s Disease and Dementia
Hallucinations, delusions, paranoia and anxiety can all come together to make someone with Alzheimer’s disease or dementia prone to abusive behavior. According to an article published in the BMJ Journal of Neurology, Neurosurgery & Psychiatry with Practical Neurology, more than 33% of caregivers have been targeted by abusive behavior from their relatives with dementia. This includes verbal abuse, such as shouting or insulting a caregiver, or physical abuse, such as hitting or kicking.
Like agitation and aggression, abusive behavior can have physical or emotional causes. If someone with dementia has soiled undergarments, pain from another medical condition or stiff joints and muscles due to a lack of physical activity, they may be more likely to lash out. They may also be agitated because you’re giving them complex instructions or asking a lot of questions that they don’t understand. Abusive behavior can even occur due to overstimulation. For example, if several people come to visit, your loved one may be triggered by the extra noise.
Responding to Abusive Behavior
If your loved one displays abusive behavior, look for a reason why. They may be upset because they’re in pain, they can’t find something they need or they think someone is threatening them. In some cases, removing sources of overstimulation and taking your loved one to a more familiar environment can help them calm down.
It can be difficult to stay calm when someone is yelling at you or trying to hurt you, but it’s important that you avoid retaliating against your loved one. Speak softly and reassure them that you love them and want to help them. If your loved one continues engaging in abusive behavior, ask other family members for help or call 911 if needed.
Depression and Emotional Changes in People With Alzheimer’s Disease and Dementia
Even if your loved one doesn’t get agitated or engage in abusive behavior, they may experience emotional changes as a result of their Alzheimer’s disease or dementia. In some cases, these changes are due to depression. This is a particular concern in the early and middle stages of the disease. Depression in people with Alzheimer’s disease might look different from those who don’t have the disease, and it might be hard for them to articulate how they are feeling, so it requires extra vigilance from the caregiver. You may notice that your loved one cries easily, struggles with feelings of guilt or exhibits an unusual level of sadness. Depression may also cause the following symptoms:
Trouble staying focused
Unexpected weight changes
Sleeping too much
Not getting enough sleep
Loss of interest in normal activities
If your loved one has any of these symptoms, schedule an appointment with a medical professional. Before the appointment, write down all the symptoms you’ve noticed. This can help doctors and other medical practitioners make a diagnosis and develop an appropriate treatment plan. If your loved one expresses a desire to harm themselves, call 911 or dial (800) 723-8255 to speak with someone from the National Suicide Prevention Lifeline.
Resources to Help During Crisis Situations
The signs of Alzheimer’s disease and dementia can be difficult to manage, especially if you’re new to caregiving. Fortunately, there are many resources available to help you and your family members understand the changes your loved one is going through and respond to them appropriately.
The Alzheimer’s Association Helpline
The Alzheimer’s Association helpline offers around-the-clock support for the caregivers of people with dementia.
What Services Does the Alzheimer’s Association Helpline Provide?
When you call the Alzheimer’s Association helpline, you’re connected with a master’s-level care consultant who can offer crisis assistance and provide information to help you make decisions regarding your loved one’s care.
Who Is the Alzheimer’s Association Helpline Useful For?
The helpline is ideal for family caregivers who have no formal training in nursing or other caregiving professions. Although the helpline is staffed by master’s-level care consultants, each consultant provides information in terms that are easy for laypeople to understand. The helpline is especially useful if you need information and assistance making decisions related to your loved one’s medical care, financial affairs or legal affairs.
How Do I Contact the Alzheimer’s Association Helpline?
The Alzheimer’s Association helpline is open 24 hours per day, 365 days per year. Call (800) 272-3900 to speak with a care consultant.