Lighting Your Way

Lighting Your Way

Dealing with the Behavioral Symptoms of Your Loved One’s Dementia

As a family caregiver of someone with dementia, you feel overwhelmed. You feel deep sadness. You feel unprepared to deal with your loved one’s dementia because you don’t understand what’s causing it and you just don’t know what you can do about it.

It’s shocking, confusing, and upsetting when “dad starts to rant and rave” or when mom “talks to people who aren’t there.” Let yourself off the hook: you are not expected to know how to deal with these behaviors.

We hope we can help you get through some of the panicked helplessness you felt when these symptoms first started appearing with your loved one. We want to help bring you more bright moments of joy with your loved one even as their dementia progresses.

We want to help you better understand some of the symptoms that can come with dementia and what can be done about them. Yes, it may surprise you, but something can be done to address certain symptoms and reduce them.

Caregiver caring for elders

What to Expect

Your Loved One's Symptoms

What to Tell the Doctor

How You Can Help at Home

Self Care

What to Expect

There can be lots of symptoms associated with dementia. Everyone seems to be familiar with symptoms like memory loss and confusion. There can also be symptoms like difficulty getting dressed, or bathing, or paying bills.

Let’s now shed the light on a whole other category of symptoms. Symptoms such as agitation and aggression. Symptoms such as hallucinations and delusions.

Doctors call these the “behavioral and psychological symptoms of dementia.” But don’t worry about the medical terms—even the professionals don’t use the medical terms very consistently. These are symptoms that include things like agitation, anxiety, elation, irritability, depression, apathy, disinhibition, delusions, hallucinations, and sleep or appetite changes.

You know it when you see it. Your loved one might be constantly pacing. They might be verbally abusive. They might be throwing things. They might be seeing things that are not really there. They might have paranoid feelings that everyone is out to get them.

Your Loved One’s Symptoms

We want to put certain behaviors on your “caregiver radar” so that you can recognize them as symptoms associated with dementia—behaviors such as agitation, delusions/paranoia, hallucinations, and aggression.

These behaviors can be commonly associated with Alzheimer’s disease. But your loved one doesn’t have to have Alzheimer’s to have these symptoms. There are other conditions that involve these same behaviors. These symptoms can occur in many types of dementias, including Alzheimer’s disease, Lewy Body Dementia, Parkinson’s Disease Dementia, and Vascular Dementia.

OK. So then what should I be looking for?

  • Specifically, signs of agitation or instances of aggressive behavior.
  • Whether your loved is experiencing hallucinations or delusions/paranoia

Agitation can be rapid changes in mood, irritability, and outbursts.

It can be excessive motor activity like pacing, rocking, gesturing, restlessness, and performing repetitious mannerisms.

It can also be verbal aggression such as yelling, speaking in an excessively loud voice, using profanity, screaming, and shouting.

Or it can be physical aggression like grabbing, shoving, pushing, resisting, hitting others, kicking objects or people, scratching, biting, throwing objects, hitting oneself, and destroying property.

The behavior has been persistent or frequent for a minimum of two weeks and represents a change from your loved one’s usual behavior (and is not related to some other medical condition such as delirium, pain, effects of a medication, or infection such as a urinary tract infection.).

Hallucinations are any sensations of something that does not actually exist in reality.

Many people think hallucinations are only visual—seeing something that is not really there. But in fact, hallucinations can involve any or all the five senses—sight, smell, taste, touch, and sound.

While people with dementia can experience hallucinations of any of the five senses, visual hallucinations are the most common.

People can experience hallucinations at any point in the progression of dementia, from early in the disease cycle to later in the disease cycle.

Some common hallucinations are: seeing strangers “who’s that man in the living room?”; hearing things “someone is talking outside of the bedroom”; and seeing deceased relatives “my mother is sitting in that chair”.

Delusions are fixed ideas about something that is not true.

Some examples of common delusions are: theft “they are stealing my things”; abandonment “you never come to see me, are you going to leave me?”; spousal infidelity “you’re having an affair”; and reference “they are talking about me in the news again”.

These behaviors are simply a part of the dementia. No, your loved one is not going crazy. Their behavior is just a result of the underlying medical condition.

Sure, the symptoms might be embarrassing, difficult to deal with, even on rare occasions dangerous—but they are symptoms of an illness just like any other medical condition.

And these behaviors are not at all uncommon. Of the 8 million Americans with dementia, 75% of them will experience these symptoms during the course of the disease.

Actually, there are a lot of things other than dementia that can cause symptoms like agitation, hallucinations, and delusions.

Certain medications can cause these symptoms.

Certain medical conditions can cause them, too, such as narcolepsy and other sleep disorders, and mental conditions such as schizophrenia. Even common conditions like urinary tract infections can cause these symptoms.

Grief or emotional trauma can cause symptoms. Even excessive exercise has been known to spark symptoms.

If your loved one abuses drugs or alcohol or is going through recovery, you might see these symptoms.

Covid-19 can cause symptoms such as olfactory hallucinations (smelling things that aren’t there.)

What Should I Tell the Doctor

About hallucinations andneuropsychiatric/behavioral dementia?

Hallucinations and any other symptoms of neuropsychiatric/behavioral dementia: such as aggression, agitation, delusions, or paranoia—should be reported to your loved one’s doctor so he/she can determine the cause.

Because symptoms such as agitation, aggressive behavior, and hallucinations can be the result of different causes, it is important that you describe the symptoms as accurately and fully as you can to the doctor.

You will want to tell the doctor:

  • what the symptoms are
  • how often they occur
  • how long they have been happening
  • if they are changing in severity
  • if there are any triggers you observe that seem to bring on the symptoms.

Remember that these symptoms can occur at any time during the stages of dementia—not just in the later stages of dementia.

These behavioral and psychological changes in dementia pose challenges and can increase the progression into a more severe decline—which is why it is important to tell the doctor when these symptoms happen.

These behaviors can certainly be very hard for you as a caregiver to handle and can easily lead to burnout and stress.

Many family caregivers think these behaviors are just part of dementia and shrug their shoulders, thinking that nothing can be done about them.

The fact is, more can be done to deal with these behaviors than you might think. Your loved one’s behavior is something that can be dealt with, not just something to endure.

  • The doctor will first try to determine if the symptoms are associated with dementia. The doctor will want to rule out other possible causes of the symptoms. As some doctors say, properly addressing issues of toileting, pain, and nutrition can help resolve symptoms like anxiety and aggression in many cases.
  • If the doctor does determine that the symptoms are part of your loved one’s dementia, there are several approaches the doctor might take.
  • The doctor might want to start with any number of non-pharmacological approaches to treatment before considering medication. Non-pharmacological approaches can include music therapy, aromatherapy, and many others. These therapies can be very effective in many cases.
  • The doctor might decide medications are necessary.
  • Medications may help address some of these symptoms. Talk to your doctor about which type of medications may be right for your loved one. It is important to understand the potential side effects of medications.

There are several therapies that do not involve medications. In fact, your loved one’s doctor may start these non-pharmacological therapies first before prescribing a medication.

These include music therapy, aromatherapy, bright light therapy, massage, and exercise.

Some medications, such as benzodiazepines, can be sedating without much efficacy in addressing the symptoms.

Antipsychotics can be sedating but can help resolve some symptoms is some patients. Doctors may prescribe antipsychotics for short-term use.

New therapies are being studied to specifically address the behavioral and psychological symptoms of dementia. Hopefully, there will be FDA approved medicines soon.

  • In addition to your loved one’s primary care provider, any number of other health care professionals might be involved with your loved one’s care.
  • These can include psychiatrists, neurologists, geriatricians, pharmacists, physical therapists, occupational therapists, or case managers. Each have their own expertise.
  • Keep in mind that other health care professionals besides the primary care doctor can be very helpful in addressing your loved one’s behavioral symptoms. For example, geriatric psychiatrists and geriatric nurses have a great deal of helpful expertise and are accustomed to interacting with family caregivers. Ask your loved one’s primary care doctor if there is a geriatric psychiatrist or geriatric nurse that they can refer you to.

What Can I Do At Home to Help?

Upgrade & Improve Environment & Home

  • Create a soothing environment. Decrease noise. Decrease brightness.
  • Remove any objects that tend to trigger the behavior.
  • Be aware of whether mirrored surfaces or poor lighting that causes shadows contribute to your loved one’s hallucinations, and if so, remove those, too.
  • Pay close attention to the toileting, pain, and nutrition needs of your loved one. Being uncomfortable – especially if your loved one cannot communicate their discomfort – can trigger these behaviors.
  • Validate your loved one’s feelings. After all, the fear or anger or other emotions they feel are very real.
  • Reassure your loved one that you are there to protect them.
  • Distraction, distraction, distraction! Trying to distract your loved one is your best strategy.
  • Change the subject.
  • Take your loved one for a walk.
  • Play a game or work a puzzle.
  • Sing a favorite song.
  • Listen to music

Should I try to convince my loved one that their hallucinations or delusions are not real?

Probably not. Telling your loved one that they are wrong and arguing with them about it is likely just to aggravate your loved one even more.

Some health professionals say, if it causes no harm to you or your loved one, the best approach is to just go along with it.

You can acknowledge and validate your loved one’s feelings without trying to convince your loved one that what they are feeling or experiencing is not true.

This is Hard. Can I handle it? What can help me from going crazy handling all this?

Emotional & Physical Stress & Risk for Depression

Family caregivers of people with dementia can experience high rates of emotional and physical stress.

The burden of caring for a loved one with dementia is one of the major reasons family caregivers consider placing their loved ones in long-term care.

Because of the stress of your role as a family caregiver, you might be at increased risk for depression as well as an increased likelihood of conditions such as high blood pressure.

So it is critical that you take care of yourself so that you can stay strong enough to care for your loved one.

Get rest when you can. Get proper nutrition. Watch out for depression. Don’t neglect your own doctor visits.

We have lots of resources at CaregiverAction.org that can help you with the nuts and bolts of caregiving, self-care, and feelings that you may have.

Check out our 10 Tips for Family Caregivers.

Go to CAN’s online Care Community to chat with other caregivers in similar situations.

You can also contact our Caregiver Help Desk, staffed by caregiving experts, to help you find the right information you need to help you navigate your complex caregiving challenges.