Displaying items by tag: medications

Behavioral and psychological symptoms of dementia (BPSD) affect nearly all people living with dementia at some point during their illness. These are really just symptoms - much like forgetfulness and repetitive questions are symptoms, but they are usually reactions to things in the environment or sensations in the individual’s body or mind.

Behavioral symptoms can include: being noncooperative in care and agitation about it, changes in sleep pattern, verbal and physical aggression, wandering, pacing, yelling and restlessness.  Other symptoms can be psychological including: anxiety, depression, apathy (lack of motivation), delusions, paranoia, hallucinations, fear, suspicion and psychosis. These symptoms can cause significant distress for both patients and their caregivers. When non-pharmacological interventions aren't sufficient, physicians may consider medications. This decision, however, requires careful consideration of both benefits and substantial risks.

Understanding BPSD and Treatment Approaches

Behavioral and psychological symptoms vary over time and by dementia type. These symptoms are typically associated with increased hospitalizations, earlier placement in long-term care facilities, and significant caregiver burden and burn out. First let’s break down what these symptoms may look like to you.

• Believing the caregiver is an imposter or not recognizing them at all (and being upset by these beliefs) are delusions.
• Reacting to redirection or necessary/safe activities with swearing, yelling, physical resistance is agitation.
• Refusing to change clothes/undergarments or get clean because they believe they (falsely) can do it themselves or they’ve already done it are delusions.
• Yelling at/threatening caregivers, neighbors, other residents or children, or seemingly unprovoked catastrophic reactions are examples of aggression.
• Emotional distress due to fears, where the person cannot be consoled, is anxiety.
• Significant distress from unfounded paranoia about thefts, potential theft, intruders, poisoned food or other fears is a symptom of psychosis.
• Seeing things that aren’t there (such as animals/pets or people/children) are hallucinations (visual) – a common symptom in Lewy Body dementia.
• Persistent sad mood because of awareness of lost skills/abilities, or disengagement from social activities that they used to enjoy – plus changes in appetite, sleep patterns and thoughts of ending it all are symptoms of depression.

These are just some of the symptoms our clients have experienced over the years. We are especially alert to behaviors that result in harm or risk of harm to themselves or others (including caregivers). These symptoms are not just moods or mental health problems. These are symptoms that the person is in distress and needing help. Behaviors are a form of communication. We need to listen and act.

The cause may or may not be their progressing cognitive disorder. For example, some people were always anxious but now may not have access to their typical coping strategies (reading, visiting with friends, going shopping, going for long quiet walks). Some people have struggled with major depression for years but can no longer benefit from counseling.

There are several behavioral symptoms that do NOT warrant use of medication: 

• General confusion without distress or just being “pleasantly confused.” 
• Wandering.
• Going into others’ rooms and accepting redirection.
• Forgetting to use their assistive devices.
• Trying to stand without assistance multiple times a day.
• Getting up in the middle of the night multiple times to use the restroom.
• Getting their days and nights confused, sleeping during the day and rummaging all night.

Depression, anxiety, apathy and sleep problems are common symptoms in dementia.

Analysis in 2021 showed a prevalence of depression in 40 % of adults with dementia.  Unfortunately the Geriatric Depression Scale has decreased reliability in patients with dementia.  The Cornell Scale for Depression in Dementia is a better assessment but takes longer. Lack of efficient assessments lead to under detection and undertreatment.

Experienced professionals can help determine what these symptoms may be communicating and help family caregivers understand how to respond. We start by examining the symptom as a possible reaction to external triggers or what unmet need the person is communicating. If triggers are internal (such as delusions or memories of past traumas) and cannot be anticipated, we need to look towards more creative environmental changes (to keep people safe) or medicine.

No drugs are approved by the Food and Drug Administration (FDA) specifically for treating all behavioral and psychological symptoms of dementia but at times medications are used to address concerning symptoms (Nuplazid® is specifically FDA approved for Parkinson’s psychosis; Rexulti®/ brexiprazole is FDA approved for agitation in Alzheimer’s).

Current clinical guidelines emphasize that environmental approaches or “non-pharmacological” management should be the first-line approach for behavioral/psychiatric symptoms of dementia. These interventions include:

• caregiver education about how to minimize behaviors, 
• supportive coaching, 
• music therapy, 
• massage,
• more cognitive stimulation, 
• environmental modifications, and
• individualized activities tailored to the person's interests and abilities. 

Only when these approaches prove insufficient, or when there is severe distress or risk of harm, are medications considered.

Early in my career a colleague/mentor described it to me as a “judicious use of medications.” When non-pharmacological interventions don’t fully help or just fail, then we look to medications – the right pill, at the right dose, with the right timing, aiming for the right outcome is a judicious use of meds.

Choosing the Right Intervention is Difficult

Symptoms can overlap and determining the proper target is often more an art than a science, but clinical guidelines help. 

For example, anxiety often walks hand-in-hand with depression. An anti-depressant may “take the edge off” of the person living with dementia. The challenge in choosing this approach is the severity of the symptoms. The timing is bothersome to the patient because the symptoms will persist until the medication is at a therapeutic level. Anti-depressants typically take 4-6 weeks for full effect, and many good clinicians start with the lowest dose and “titrate” up to a therapeutic level. It is also important to assess if treating anxiety/depression may help other symptoms such as changes in sleep (such as a person who is in bed all day). Typically the safest medication for anxiety and depression in dementia is to start with sertraline (Zoloft®) or escitalopram (Lexapro®).

Apathy (a persistent loss of motivation or lack of interest in things) is a symptom of dementia at any stage and often a persistent symptom that does not come and go. A clinician should identify if a patient has apathy or depression before starting antidepressants. Typically medications do not help apathy. An individualized plan of care to try to engage a patient in activities they prefer can be helpful. Occasionally a trial of a low-dose stimulant may improve a person’s quality of life.

Sleep disturbances occur in 35% of patients with dementia. Age and dementia can change a person's circadian rhythm. Non-pharmacological attempts should be considered before medicine.  Consider sleep hygiene strategies, possibly try a light box. If medication is needed, a caregiver should discuss what they’ve tried with their provider. Trazodone, a common antidepressant given at lower doses than for treating depression, is often given to stabilize moods and improve sleep without oversedation.

The Potential Benefits of Antipsychotics: What the Evidence Shows

Antipsychotic medications do offer modest benefits for certain symptoms in dementia. They should only be used to manage psychosis, aggressive behaviors or distressing hallucination/delusion.  Understanding what they can—and cannot—do is essential for informed decision-making.

In this next section, we will use generic names. Just for your reference here is the key to brand names:

Aripiprazole = Abilify

Brexpiprazole = Rexulti 

Quetiapine = Seroquel

Risperidone = Risperdal

Olanzapine = Zyprexa

Haloperidol = Haldol

Trazodone = Desryl

Demonstrated Efficacy

Research shows that antipsychotics demonstrate modest efficacy in treating psychosis, aggression, and agitation in people with dementia. However, the keyword here is "modest." The improvements, while real, are typically small in magnitude.

Recent evidence indicates:

• Agitation and Aggression: Aripiprazole, brexpiprazole, and risperidone show effectiveness for severe agitation in Alzheimer's dementia with brexpiprazole reducing agitation better compared to placebo after 12 weeks of treatment.
• Psychotic Symptoms: Aripiprazole and risperidone are more effective than placebo in managing psychotic symptoms in older adults with dementia.
• Individual Response: Some patients do experience meaningful improvement in their symptoms, allowing for better quality of life and reduced caregiver stress.

Commonly Prescribed Medications

Second-generation antipsychotics such as risperidone, olanzapine, quetiapine, and aripiprazole are prescribed more frequently than first-generation antipsychotics like haloperidol. First generation medications have significant negative side-effects including involuntary movement disorders, significant oversedation, drops in blood pressure and increased falls.

The Significant Risks: What Every Caregiver Must Know

While medications can provide relief for some symptoms, they carry substantial risks.  Many of the above mentioned medications have FDA black box warnings and international regulatory alerts.

Increased Mortality Risk

The most serious concern is increased mortality. The FDA has issued a black box warning about increased death risk among elderly patients with dementia receiving antipsychotics for BPSD, with mortality rates of 3.5% versus 2.3% in those not taking these medications, primarily due to cerebrovascular disease.

That means that there is only a 1.2% difference in the risk of death using antipsychotics. 

Cerebrovascular Events and Stroke

Recent large-scale studies show antipsychotic use is associated with increased risks for stroke. These risks are particularly elevated in the first three months after starting treatment.

Additional Serious Adverse Events

Antipsychotics may increase risks for pneumonia, cerebrovascular events, parkinsonian symptoms, and venous thromboembolism. A comprehensive 2024 study found:

• During the first three months of treatment, pneumonia rates were 4.48% among antipsychotic users versus 1.49% for non-users
• Increased risk of hip fractures
• Increased risk of venous thromboembolism
• Increased risk of long-term care placement and institutionalization

Read these statistics critically – these are correlations, not necessarily causal adverse events. For example, just using medications didn’t cause long-term placement or institutionalization. Placement likely would have happened if the medications were not used also.

Common Side Effects

Beyond life-threatening risks, antipsychotic medications frequently cause:

• Excessive sedation and drowsiness
• Extrapyramidal symptoms (tremors, stiffness, difficulty with movement)
• Confusion and cognitive worsening
• Urinary tract infections
• Falls
• Metabolic changes

In a person with dementia, these symptoms may CAUSE problematic behaviors. So, if the medications do not seem to be working, it could be because of side effects.

The Reality Check: Limited Effectiveness

Perhaps most concerning is the gap between the risks and the actual benefits. A study examining real-world outcomes found that antipsychotic treatment improved behavioral and psychological symptoms for fewer than one-third of patients while increasing the risk of adverse events for more than half.

Care teams must have realistic goals. These meds will not bring the person back to their baseline personality. They will not make them happy and engaging if they have preferred solitude their whole lives. They may not resolve anxiety or resistance completely but may make it easier to give a shower or change their clothing. They may still go into others’ rooms but will accept redirection from a caregiver. 

Palliative Care and End of Life

In the end stages of Alzheimer’s and related dementias, medications are sometimes given to relieve distress. Anti-anxiety medication such as lorazepam (Ativan) and alprazolam (Xanax) are sometimes suggested when a person enters a stage where they are no longer ambulatory and have 24/7 care.

Critical Conversations for Caregivers and Providers

If you or your loved one's physician is considering or has prescribed any medication or antipsychotic medication, here are essential questions to guide the conversation:

Before Starting Treatment

1. What might these symptoms be communicating?

• Is the person waking up at night because of urinary frequency or incontinence?
• Is pain the reason why the person has vocally disruptive behaviors?
• Are they pacing because of constipation?
• Is there an infection causing worsening confusion and delusions?

2. Have all non-pharmacological interventions been thoroughly attempted?

• What specific non-drug approaches have been tried?
• Has the care environment been optimized?
• Have caregiver support and education been provided?

3. What specific symptoms are we targeting with this medication?

• Is the symptom severe agitation, psychosis, or aggression?
• How distressing is this symptom to my loved one?
• Is there immediate risk of harm to the person living with dementia or others?

4. What are the expected benefits for my loved one specifically?

• What improvement can we realistically expect?
• How long before we might see benefits?
• What does "success" look like?

5. What are the specific risks for my loved one?

• Given their age, medical conditions, and medications, what are their individual risk factors?
• What is their stroke risk?
• Do they have any conditions that increase risk (such as Lewy body dementia or Parkinson's disease)?

6. What alternative medications or approaches should we consider first?

• Have we considered treating pain empirically?
• Would an antidepressant be appropriate?
• Are there other medical or psychiatric conditions that need treatment?
• Are there natural or homeopathic approaches we could try?

During Treatment

7. What is the treatment plan and monitoring schedule?

1. • What is the starting dose and target dose?
   • How will we monitor for effectiveness?
   • What specific side effects should we watch for and how should we report them?
   • How often will we reassess the need for this medication - does it need another office visit or telehealth or just phone call?

8. What physical health monitoring will be done?

1. • Will there be regular checks of blood pressure, blood sugar, and movement symptoms?
   • How frequently should we check vital signs?
   • What warning signs require immediate medical attention?

9. How long will my loved one stay on this medication?

1. • For patients who remain relatively asymptomatic for 3-6 months on an antipsychotic, a discontinuation trial should be seriously considered.
   • What is our plan for reassessing the ongoing need?
   • What is the plan for gradual tapering when appropriate?
   • Are there any risks of stopping the medication abruptly?
   • Are there any risks of stopping it slowly?
   • If we discontinue the medication and symptoms return, what is the process for resuming medication? 

For Specific Dementia Types

10. Is this medication appropriate for the type of dementia my loved one has? 

1. • For people with Lewy body dementia or Parkinson's disease dementia, which medications are best to limit potential motor function deterioration?
   • How will this medication impact their thinking/mentation or language?

Informed Consent

11. Can we review the risks and benefits together in detail? 

1. • Request a frank discussion of mortality and stroke risks.
   • Understand that this is an off-label use for most symptoms.
   • Discuss what success looks like versus what "no benefit" looks like.
   • Consider documenting the discussion and shared decision-making process.

The Importance of Regular Reassessment

One of the most critical aspects of antipsychotic use in dementia is time-limited use to minimize the impact of side effects. Recent data shows that while antipsychotic use decreased by 25.8% overall from 2015 to 2020 among older adults with dementia, use remained steady among community-dwelling individuals. This suggests that in home settings, medications may continue longer than medically necessary.

Existing studies generally observe treatment effects within a 3-month period, and evidence for longer-term use remains limited. Regular reassessment should include:

• Evaluation of whether symptoms have improved;
• Assessment of side effects and adverse events;
• Consideration of whether non-pharmacological interventions could now be effective;
• Planning for gradual dose reduction and discontinuation trials when appropriate.

 Making Informed Decisions Together

The decision to use antipsychotic medications in dementia is never simple. These medications occupy a challenging space: they can provide meaningful relief for some severe symptoms, but they carry substantial risks, and their benefits are often modest at best. 

ALZ You Need to Know. The most important takeaway is that this decision requires:

1. Exhaustive attempts at non-pharmacological interventions first
2. Clear identification of target symptoms that are severe and distressing
3. Honest discussion of realistic benefits versus significant risks
4. Individualized assessment of your loved one's specific situation
5. Careful monitoring during treatment
6. Regular reassessment with plans for discontinuation when possible

As a caregiver, you are an essential partner in this decision-making process. Do not hesitate to ask questions, seek second opinions, and advocate for your loved one. The goal is always to optimize their quality of life while minimizing harm—a balance that requires ongoing communication with the healthcare team and careful attention to both benefits and risks.

Remember, we are here to support you. You can set up a coaching call with our team by emailing This email address is being protected from spambots. You need JavaScript enabled to view it..

References

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