In my more than 20 years providing therapy to dementia caregivers, I often hear some version of: 

“Around other people they’re pleasant and conversational, but with me they just shut down or get short-tempered. They could treat me differently if they wanted to.”

The truth is, maybe, and maybe not. What the person living with dementia and their family may be experiencing is a combination of behavioral and psychological symptoms that come with dementia (also called BPSD), but that individuals and families receive VERY little information or guidance about. 

For many families I work with, it is not the memory loss that creates the greatest suffering, but the emotional and behavioral changes—night-time agitation, sharp words from someone who used to be gentle, frightening hallucinations, or a pervasive apathy that seems to erase initiative. 

These behavioral and psychological symptoms of dementia (BPSD) reliably predict caregiver burden, depression, and decisions to seek institutional care, often more strongly than cognitive impairment alone (Black & Almeida, 2004; Ornstein et al., 2012; Mehta et al., 2017).

For therapists working with people living with dementia and their families, understanding BPSD—and intervening early and thoughtfully—is central to effective, compassionate care (Kales, Gitlin, & Lyketsos, 2015).

 

In this article, I cover:

• What behavioral and psychological symptoms of dementia (BPSD) are, and why they show up alongside memory loss
• Which symptoms tend to appear earlier versus later in the course of dementia
• The brain basis for these changes — why they are not “personality” or willfulness
• The toll BPSD takes on caregivers and families
• How to help families tell the difference between “won’t” and “can’t”
• What treatment — nonpharmacologic and pharmacologic — actually looks like
• Why treating BPSD is an ethical obligation, not an optional add-on

 

What are behavioral and psychological symptoms of dementia (BPSD)?

Behavioral and psychological symptoms of dementia (BPSD) are “signs and symptoms of disturbed perception, thought content, mood, or behavior” that occur in the context of dementia (Kales et al., 2015, p. h369). 

BPSD include:

• Agitation
• Depression
• Apathy
• Repetitive questioning
• Psychosis (delusions and hallucinations)
• Aggression
• Sleep problems
• Wandering
• Disinhibition
• Irritability
• Socially inappropriate behaviors

(Kales et al., 2015; van der Linde et al., 2012)

Large epidemiologic studies suggest that nearly all people living with dementia develop at least one BPSD over the course of their illness, often several at once (van der Linde et al., 2012).

The average person with a dementia disorder experiences about five mental health or behavioral symptoms—changes in mood, motivation, behavior, and perception that accompany the memory and thinking changes most people associate with dementia (García-Martín et al., 2022).

 

Common BPSD Across the Dementia Course

 BPSD are not random; certain symptoms tend to dominate at different stages of dementia, although individual variability is high (García-Martín et al., 2022; Kales et al., 2015).

 

Earlier Stages: Emotional and Motivational Changes

 In earlier stages of dementia, the most common BPSD are apathy, depression, and anxiety (García-Martín et al., 2022). 

 

• Apathy manifests as loss of interest or drive—a flatness where the person seems less engaged with people and activities they previously enjoyed (García-Martín et al., 2022; Kales et al., 2015). 
• Depression appears as persistent low mood, tearfulness, and social withdrawal, sometimes below the threshold of a major depressive episode but clinically significant (García-Martín et al., 2022). 
• Anxiety may present as excessive worry, restlessness, “shadowing” a caregiver, or a general sense of being on edge (Kales et al., 2015; van der Linde et al., 2012).

 

Systematic reviews and community-based studies consistently identify apathy, depression, and anxiety as among the earliest and most prevalent BPSD in mild dementia and even mild cognitive impairment (van der Linde et al., 2012; García-Martín et al., 2022).

 

Later Stages: Agitation, Psychosis, and Disinhibition

 As dementia progresses into moderate and severe stages, irritability, agitation, and psychotic symptoms become more prominent (García-Martín et al., 2022; Kales et al., 2015). 

 

• Irritability and agitation include being easily upset, pacing, repetitive questioning, arguing or complaining, rejecting care (e.g., bathing, dressing), or disruptive vocalizations (Kales et al., 2015). 
• Delusions involve firmly held but false beliefs, such as thinking a loved one is an imposter or that someone is stealing from them (Kales et al., 2015). 
• Hallucinations involve seeing or hearing things that are not present; these are especially common in Lewy body dementia (Kales et al., 2015). 
• Disinhibition (social or sexual inappropriateness) and aberrant motor behavior (wandering, rummaging) are typical of more advanced disease or frontotemporal pathology (Kales et al., 2015).

 

It’s notable that apathy is reported across all stages and tends to worsen over time, whereas psychotic symptoms and aggression are more episodic and more common in moderate–severe disease (García-Martín et al., 2022; van der Linde et al., 2012).

 

Matrix of Common BPSD by Dementia Stage

 For therapists, it can be helpful to visualize which symptom clusters are more typical earlier versus later in the disease course, while remembering that any given person may not follow this pattern exactly (García-Martín et al., 2022; Kales et al., 2015).

What’s Happening in the Brain that Causes BPSD: Why These Symptoms Are Not “Just Personality”

 “Around other people they’re pleasant and conversational, but with me they just shut down or get short-tempered. They could treat me differently if they wanted to.”

Therapeutic work with families often begins with reframing BPSD as brain-based phenomena rather than willful misbehavior. 

When the brain has dementia, the neurons that produce serotonin, dopamine, and norepinephrine are being lost or damaged, particularly in the brain regions that govern mood and motivation. So the brain is literally producing less of these neurotransmitters. 

At the same time, the neurotransmitters that are still being made aren’t signaling as well, because the pathways they travel and the receptors they’re meant to bind to are also being disrupted by the same disease process damaging the rest of the brain (Yang et al., 2023).

I like to describe these neurotransmitters as the brain’s emotional messengers. In dementia, there are fewer messengers being made, and at the same time, the roads and mailboxes they depend on to deliver their message are damaged too. That combination — less production plus poorer delivery — is what we believe underlies much of the mood and behavioral change we see clinically. 

On top of that, the parts of the brain responsible for managing impulses and regulating emotions are being affected as well, all at the same time.

 

 

“I often describe these neurotransmitters as the brain’s emotional messengers. In dementia, there are fewer messengers being made, and the roads and mailboxes they depend on to deliver their messages are damaged.”

— Regina Koepp, PsyD, ABPP

 

Behavior is Communication 

BPSD is often treated as a set of symptoms to manage. But a growing body of research asks us to look at it differently: not only as pathology, but as communication. 

As dementia progresses and language becomes harder to access, a person may lose the words for “I’m in pain,” “I’m frightened,” or “I’m bored,” and that same message gets sent through behavior instead — agitation, calling out, resisting care, wandering (Warren, 2022).

A review published in Frontiers in Psychology, makes the case that when a person with dementia cannot communicate needs like hunger, pain, or the need to use the bathroom, those needs don’t disappear — they surface as BPSD. This reframe shifts the clinical question from “how do I stop this behavior?” to “what is this behavior telling me?” (Warren, 2022).

The unmet-needs research backs this up as well. In one study of community-dwelling people with dementia, 99% had at least one unmet need, most commonly around personal and home safety, general health and medical care, meaningful activity, and unaddressed legal or advance care planning needs (Black et al., 2013, as cited in Warren, 2022). 

Studies using the Camberwell Assessment of Need for the Elderly found that a lack of daytime activity and a lack of social interaction were consistently linked to more BPSD, including affective and psychotic symptoms (Ferreira et al., 2016; Michelet et al., 2021, as cited in Warren, 2022).

 

Common triggers of BPSD include: 

• Unmet physical needs — pain, hunger, thirst, needing the bathroom, fatigue
• Lack of meaningful daytime activity or stimulation
• Lack of social contact
• Environmental factors — overstimulation, unfamiliar surroundings, noise
• Unaddressed medical or safety needs
• Communication breakdown, when a person can no longer find the words for what they need

For therapists and families, this reframe changes the work. A behavior is rarely “just” the disease. Often, it’s the only language left.

 

Impact on Caregiver Burden and Family Well-Being

 For therapists, the clinical significance of BPSD lies not only in the suffering they cause for the person living with dementia, but also in their profound impact on caregivers. 

Meta-analyses and systematic reviews consistently show that BPSD as a group are among the strongest predictors of caregiver burden, depression, and psychological distress, often more so than cognitive impairment severity. 

Disruptive behaviors like agitation, aggression, disinhibition, along with delusions and mood changes as you can imagine are very difficult to navigate in caregiving relationships.  

These symptoms increase supervision needs, disrupt sleep, limit caregivers’ ability to work, and strain relationships, contributing both to objective burden (time, tasks, finances) and subjective burden (emotional strain, grief, role captivity) (Black & Almeida, 2004; Ornstein et al., 2012; Mehta et al., 2017).

Caregiver narratives reflect this: families frequently report that “the forgetfulness we can manage; it’s the agitation, the accusations, the pacing all night that break us down.” 

As a result, BPSD are also consistent predictors of earlier nursing home placement and higher health-care utilization (Black & Almeida, 2004; Ornstein et al., 2012).

For therapists, this means that assessing, conceptualizing, and treating BPSD are integral to the mental health and well-being of both the person living with dementia and the caregiver —not a secondary concern (Kales et al., 2015).

 

How Caregiver Distress and Burnout Can Feed the BPSD Cycle

When a person has dementia, it affects them and their entire family system. 

A 2022 study in Geriatric Nursing modeled the relationships among caregivers’ positive feelings about caregiving, their expressed emotion, their coping style, and the BPSD of the person they care for (Zhang et al., 2022). 

Expressed emotion — a measure of criticism, hostility, and emotional over-involvement directed at the person receiving care — fully mediated the relationship between caregivers’ positive feelings and BPSD. In plain terms: when burnout erodes the positive aspects of caregiving, expressed emotion rises, and BPSD rises with it (Zhang et al., 2022).

This isn’t about blaming caregivers. It’s the opposite. It means a caregiver’s own distress, exhaustion, and response style are part of a two-way system with the person’s behavior, not a separate issue to address after the “real” symptoms are managed. 

A caregiver who is depleted or frightened, understandably, given the demands they’re under, may respond to agitation or repetitive questioning with more criticism or withdrawal, which this research suggests can, in turn, increase distress and behavior in the person with dementia (Zhang et al., 2022).

For therapists, this reframes the caregiver piece of treatment: supporting caregiver mental health and coping isn’t adjacent to BPSD treatment. It may directly change the behavioral symptoms themselves.

 

Clinical Work With Families: Distinguishing “Won’t” From “Can’t”

 In therapy, I often hear statements like:

“They can empty the dishwasher and put their clothes away—if they wanted to shower every day, they could.”

“Around other people they’re pleasant and conversational, but with me they just shut down or get short-tempered. They could treat me differently if they wanted to.”

 

The clinical task is to help families differentiate between won’t and can’t—to identify where BPSD and cognitive changes are limiting initiation, emotional regulation, or social skills, even when pockets of ability remain (Kales et al., 2015; van der Linde et al., 2012).

A person may retain procedural abilities with prompting (e.g., putting dishes away) while apathy can make it very difficult to initiate or sustain more complex self-care tasks such as daily bathing. 

A person with dementia may be able to engage socially in brief, structured encounters, while irritability and emotional exhaustion emerge in the intimate caregiver relationship, where demands and emotional stakes are higher (Black & Almeida, 2004; Ornstein et al., 2012).

 

Therapeutic work includes:

• Validating caregiver experience and grief.
• Mapping remaining strengths and specific areas of “can’t,” informed by cognitive, functional, and behavioral assessment.
• Co-constructing realistic expectations and care plans that reduce misattributions of willful behavior (“she’s doing this on purpose”) and as a result relationship strain (Kales et al., 2015; Mehta et al., 2017).

 

Treatment Approaches: Individual Therapy, Medication, and Caregiver Family Therapy

 

Individual Therapy and Caregiver Family Therapy: Nonpharmacologic Interventions

For most BPSD, medication isn’t where we start. Guidelines and state-of-the-art reviews are consistent on this — nonpharmacologic strategies should be first-line treatment.

There’s strong evidence to support this. The strongest evidence base we have is for structured family caregiver interventions — programs that teach caregivers to recognize triggers, build problem-solving skills, manage their own stress, and create activity plans matched to what the person with dementia can still do and enjoy. 

Meta-analytic effect sizes for these caregiver programs are comparable to, or even larger than, the effect sizes for antipsychotic medications (Kales et al., 2015; Mehta et al., 2017). That’s worth repeating to any family who assumes medication is the only real option on the table.

In practice, here’s what this looks like across individual and family work:

 

Therapy with the person living with dementia, when cognitively accessible, can include:

• Validation therapy and supportive counseling that meets the person where they are cognitively, rather than correcting or arguing with their reality
• Behavioral activation to rebuild a sense of purpose and counter apathy
• Cognitive-behavioral strategies adapted for mild-to-moderate cognitive impairment, especially for anxiety and depression
• Reminiscence-based approaches that draw on preserved long-term memory and identity
• Cognitive stimulation group therapy — structured, themed group sessions shown to support cognitive and social functioning in mild-to-moderate dementia

 

Caregiver and family therapy might include:

• Psychoeducation — helping families understand BPSD as brain-based rather than willful, which on its own tends to lower conflict and caregiver distress
• Problem-solving therapy, walking caregivers through specific triggers and testing out concrete responses
• Family systems work, especially when siblings or spouses disagree about care decisions, safety, or the timing of a move to memory care
• Cognitive reframing and emotion regulation skills that directly address the expressed-emotion pathway I described earlier as a driver of BPSD
• Self-compassion work. Caregiving is filled with moral dilemmas and injuries that challenge our sense of duty and our own identities. Caregivers often find themselves in unimaginable binds, like: “even if I’m great at caregiving, I’m still going to get an undesirable outcome- my mom is still going to die.” Self-compassion can help the person develop the ability to maintain a sense of self and groundedness in the midst of unimaginable heartbreak, and feel less alone at the same time. 
• Therapy focused on ambiguous grief and loss can also be very helpful in supporting dementia caregivers. 

 

Pharmacologic Interventions

Medication still has a place in managing BPSD. Antidepressants can help with depression and anxiety in dementia, and antipsychotics can reduce severe psychosis or aggression, though these are risk-benefit decisions that need to be individualized and guided by current recommendations (Kales et al., 2015; Yang et al., 2023).

Medication works best as one piece of a larger plan, layered on top of, not swapped in for, psychosocial and environmental interventions. 

As therapists, we’re often the ones seeing the person and family most consistently, which puts us in a good position to track whether symptoms are shifting, whether side effects are showing up, and what caregivers are noticing day to day, and to bring all of that back to the prescriber (Kales et al., 2015).

 

Refuse to Accept Suffering as Inevitable

[Imagine that I’m standing on a soapbox with a megaphone as you read this] 

 

People living with dementia and their families deserve mental health care, just like everyone else. 

There’s a common misconception that because someone has dementia, suffering is expected — a foregone conclusion. As a result, the person with dementia doesn’t get the help they need and left to suffer, and the family is left to navigate complex mental health symptoms largely on their own. 

This is cruel, harmful, and equivalent to abandoning a person and their family in their greatest time of need. 

Changing it will take more than good intentions. 

It will take an overhaul of how our health care and mental health care systems support people living with dementia and their families.  And it will take people living with dementia and their families refusing to accept suffering as the default, and demanding better. 

This is why this conversation matters so much. And, I so appreciate you taking the time to learn about therapy for people living with dementia and integrating it into your work. 

 As therapists, our work with older adults and their families is central to this paradigm shift. When we ask about mood, behavior, sleep, and perception—not just memory—and when we respond to BPSD with curiosity, compassion, and evidence-based interventions, we help people living with dementia and their families feel more supported and empowered to navigate the challenges that accompany dementia. 

 

Keep Learning with a CE Course

If you’d like to learn more about providing therapy to people living with dementia and their families, take my on-demand 6-hour course on Therapy with Dementia Disorders: Individual + Caregiver Family Therapy Across the Stages of Dementia 

 

 

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