Behavioral & Psychiatric Features
Behavioral & Psychiatric Features
What Do You Need to Know?
- Neuropsychiatric symptoms (NPS) affect >90% of dementia patients and are the strongest drivers of caregiver burden, earlier institutionalization, and faster cognitive decline
- Behavioral profile varies by dementia type: apathy dominates AD; visual hallucinations define DLB; disinhibition/loss of empathy characterize bvFTD; depression/emotional incontinence in VaD
- DICE framework (Describe, Investigate, Create plan, Evaluate) — non-pharmacological interventions are first-line for agitation/aggression
- FDA black box warning: all antipsychotics carry 1.6–1.7× increased mortality risk in elderly dementia patients (cerebrovascular events, infections, sudden death)
- Brexpiprazole (2023) — first FDA-approved medication for agitation in Alzheimer disease
- Apathy ≠ depression: apathy = absence of motivation WITHOUT sadness; depression = sadness + hopelessness — treatment differs substantially
- Capacity assessment is decision-specific, not global — a patient may retain capacity for some decisions but not others
Neuropsychiatric Symptoms — Overview
Epidemiology & Impact
- NPS prevalence: >90% of dementia patients experience ≥1 NPS during illness course
- Most common across all dementias: apathy (49–72%), followed by depression (20–50%), agitation (30–50%)
- NPS are associated with: faster cognitive decline, earlier nursing home placement, increased mortality, greater caregiver burden and depression
- NPS account for more caregiver distress than cognitive symptoms themselves
- Cost of NPS management — estimated 30% of total dementia care costs
Assessment Tools
| Tool | Domains | Informant | Use |
|---|---|---|---|
| NPI (Neuropsychiatric Inventory) | 12 domains (delusions, hallucinations, agitation, depression, anxiety, euphoria, apathy, disinhibition, irritability, aberrant motor, sleep, appetite) | Caregiver | Gold standard for NPS assessment in dementia research and clinical trials |
| NPI-Q (Questionnaire) | Same 12 domains | Caregiver self-report | Briefer screening version for clinical use |
| Cohen-Mansfield Agitation Inventory (CMAI) | 29 agitation behaviors | Nursing staff | Nursing home settings; tracks agitation frequency |
| Cornell Scale for Depression in Dementia (CSDD) | 19 depression items | Clinician + caregiver | Validated for depression assessment in dementia (unlike GDS/PHQ-9) |
💎 Board Pearl
- The NPI is the standard tool for assessing NPS in dementia — covers 12 behavioral domains scored by frequency × severity; the Cornell Scale is the validated depression instrument for patients with dementia
- Always evaluate NPS before attributing behavior to dementia progression — delirium (UTI, medication changes, pain, constipation) is the most common reversible mimicker
Behavioral Symptoms by Dementia Type
Characteristic NPS Profiles
| Dementia Type | Most Common NPS | Characteristic Features | Board-Relevant Details |
|---|---|---|---|
| Alzheimer Disease (AD) | Apathy (most common), depression, anxiety | Agitation/aggression (later stages); delusions (theft, infidelity); wandering; sundowning | Apathy increases with disease severity; delusions of theft are most common delusional type; sundowning = increased confusion/agitation in late afternoon/evening |
| Dementia with Lewy Bodies (DLB) | Visual hallucinations (core feature), depression | REM sleep behavior disorder (RBD); well-formed visual hallucinations (people, animals); paranoid delusions; anxiety; Capgras syndrome | Visual hallucinations are a core diagnostic criterion; recurrent, detailed, well-formed; severe neuroleptic sensitivity — antipsychotics can be fatal |
| bvFTD | Apathy/inertia, disinhibition | Loss of empathy/sympathy; compulsive/ritualistic behaviors; hyperorality (dietary changes, carbohydrate craving); loss of social awareness | Behavioral changes precede memory loss by years; disinhibition includes inappropriate sexual behavior, reckless spending; often misdiagnosed as psychiatric illness |
| Vascular Dementia (VaD) | Depression, apathy | Psychomotor slowing; emotional incontinence (pseudobulbar affect); personality changes; executive dysfunction → behavioral dysregulation | Depression may precede or accompany VaD; emotional incontinence = involuntary crying/laughing disproportionate to mood — treat with dextromethorphan/quinidine (Nuedexta) |
Hallucination Characteristics by Dementia Type
| Feature | DLB | AD | Parkinson Disease Dementia |
|---|---|---|---|
| Modality | Visual >> auditory | Visual > auditory (late stages) | Visual (similar to DLB) |
| Content | Well-formed people, children, animals | Less formed; often paranoid/persecutory | Well-formed people, animals |
| Timing | Early, recurrent (core feature) | Usually moderate-to-severe stages | Fluctuating; often medication-related |
| Insight | May retain partial insight early | Poor insight | May retain partial insight |
| Mechanism | Cholinergic deficit + visual cortex Lewy bodies | Cholinergic deficit + cortical atrophy | Cholinergic deficit + dopaminergic therapy |
💎 Board Pearl
- Well-formed, recurrent visual hallucinations (people, children, animals) early in disease = think DLB until proven otherwise — this is a core diagnostic criterion
- bvFTD behavioral changes precede memory loss — patients are frequently misdiagnosed with depression, bipolar disorder, or personality disorder for years before correct diagnosis
- Neuroleptic sensitivity in DLB: antipsychotics can cause severe/fatal parkinsonism, rigidity, obtundation — avoid typical antipsychotics entirely; if absolutely needed, use low-dose quetiapine or pimavanserin
Agitation & Aggression
Epidemiology
- Prevalence: 30–50% of dementia patients; increases with disease severity
- Leading cause of emergency psychiatric consultation and nursing home admission
- Aggression subtypes: verbal (screaming, cursing) and physical (hitting, biting, throwing objects)
DICE Approach (APA/AMA Recommended)
| Step | Action | Details |
|---|---|---|
| D — Describe | Characterize the behavior | What, when, where, how often, triggers, severity; use specific behavioral terms, not vague labels |
| I — Investigate | Identify underlying causes | Pain (faces scale if nonverbal), infection (UTI, pneumonia), constipation, medication side effects, environmental triggers, unmet needs (hunger, toileting), depression, delirium |
| C — Create plan | Develop interventions | Non-pharmacological FIRST; address reversible causes; caregiver education; environmental modification; structured activities; pharmacological only if non-pharm fails and risk to self/others |
| E — Evaluate | Assess response | Re-evaluate at defined intervals; taper medications if behavior resolves; document outcomes |
Non-Pharmacological Interventions (First-Line)
- Environmental modification: reduce noise/overstimulation, adequate lighting, familiar objects, consistent routine
- Caregiver education: communication techniques (calm tone, simple sentences, redirection), avoid confrontation/correction
- Structured activities: music therapy, art therapy, pet-assisted therapy, exercise programs
- Music therapy: strongest evidence base among non-pharm interventions; reduces agitation by 30–50% in RCTs
- Person-centered care: individualized approaches based on patient history, preferences, and personality
- Pain assessment and management: unrecognized pain is a major driver of agitation in nonverbal patients
Pharmacological Management of Agitation
| Medication | Dose Range | Evidence | Key Concerns |
|---|---|---|---|
| Brexpiprazole | 0.5–2 mg/day | FDA-approved 2023 for AD agitation; NNT ~8 | Atypical antipsychotic; still carries class black box warning; weight gain, somnolence |
| Citalopram | 10–30 mg/day | CitAD trial: 30 mg reduced agitation vs. placebo; NNT ~7 | QTc prolongation at >20 mg (especially elderly); max 20 mg in >60 yr per FDA; cognitive worsening at 30 mg |
| Dextromethorphan/quinidine | 20/10 mg BID | Moderate evidence for agitation; FDA-approved for pseudobulbar affect | QTc prolongation; CYP2D6 interactions |
| Trazodone | 25–150 mg/day | Limited evidence; commonly used in practice | Orthostatic hypotension, sedation, priapism (rare) |
| Quetiapine | 12.5–100 mg/day | Modest benefit; preferred in DLB/PDD due to low D2 affinity | Black box warning; metabolic syndrome; sedation; falls |
Clinical Pearl
- CitAD trial: citalopram 30 mg reduced agitation significantly (NNT ~7), BUT caused QTc prolongation and modest cognitive worsening — limits practical utility; the 20 mg FDA max dose in elderly may not reach the effective dose
- Always investigate and treat reversible causes (pain, infection, constipation, medication effects) BEFORE starting psychotropics for agitation
💎 Board Pearl
- Brexpiprazole (Rexulti) is the first and only FDA-approved medication specifically for agitation in Alzheimer disease (approved May 2023) — expect board questions on this
- DICE framework = the recommended systematic approach to agitation — Describe, Investigate, Create plan, Evaluate; non-pharmacological interventions are always first-line
Psychosis in Dementia
Hallucinations
- Visual hallucinations more common than auditory in dementia (opposite of primary psychiatric disorders)
- Prevalence: DLB 60–80%, PDD 40–60%, AD 15–25% (usually later stages)
- DLB hallucinations: well-formed, detailed, recurrent — people, children, small animals; often in peripheral vision or dim lighting
- Auditory hallucinations alone in dementia patient → consider late-onset schizophrenia, delirium, Charles Bonnet syndrome (visual only)
Delusions
| Type | Description | Most Common In |
|---|---|---|
| Persecutory/theft | "Someone is stealing from me" — most common delusional type in AD | AD (up to 30%) |
| Infidelity | Spousal infidelity delusion; often directed at caregiver | AD, DLB |
| Capgras syndrome | Belief that a familiar person has been replaced by an impostor | DLB > AD; associated with right hemispheric dysfunction |
| Phantom boarder | Belief that uninvited people are living in the home | AD, DLB |
| Misidentification | Misidentifying self in mirror; TV characters as real; misidentifying home | AD (moderate–severe stages) |
FDA Black Box Warning — Antipsychotics in Elderly Dementia
- 1.6–1.7× increased mortality risk compared to placebo in elderly dementia patients
- Causes of death: cerebrovascular events (stroke, TIA), infections (pneumonia), sudden cardiac death
- Applies to ALL antipsychotics — both typical and atypical
- Typical antipsychotics (haloperidol) carry even higher risk than atypicals
- Risk increases with dose and duration of use
- CMS mandate: nursing homes must attempt antipsychotic dose reduction or discontinuation within specified intervals
Pharmacological Options for Dementia Psychosis
| Medication | Dose | Indication/Notes | Key Warnings |
|---|---|---|---|
| Pimavanserin (Nuplazid) | 34 mg/day | FDA-approved for PD psychosis; 5-HT2A inverse agonist; no D2 blockade → does not worsen motor symptoms | QTc prolongation; not FDA-approved for dementia psychosis (studied but not approved) |
| Quetiapine | 12.5–100 mg | Preferred atypical in DLB/PDD (lowest D2 affinity); off-label | Black box warning; sedation; metabolic effects; orthostatic hypotension |
| Clozapine | 6.25–50 mg | Lowest EPS risk; used in PD psychosis refractory to pimavanserin | Agranulocytosis (mandatory REMS; ANC monitoring); sedation; metabolic syndrome |
| Brexpiprazole | 0.5–2 mg | FDA-approved for AD agitation (2023); partial D2/5-HT1A agonist | Black box warning; weight gain; akathisia |
💎 Board Pearl
- Pimavanserin = only FDA-approved treatment for Parkinson disease psychosis; works via 5-HT2A inverse agonism without D2 blockade → does not worsen parkinsonism
- Capgras syndrome (impostor delusion) on boards = think DLB; associated with right hemispheric dysfunction and disconnection between face recognition and emotional familiarity circuits
- Antipsychotic black box: 1.6–1.7× mortality increase — applies to ALL antipsychotics; typical > atypical risk; deaths from CVA, infection, sudden cardiac death
- Visual hallucinations in dementia > auditory (opposite of schizophrenia) — auditory-predominant hallucinations in an elderly patient should raise suspicion for late-onset schizophrenia or delirium
Depression in Dementia
Epidemiology & Diagnosis
- Prevalence: 20–50% across dementia types; highest in VaD and DLB
- Depression may be prodromal (precedes cognitive decline by years) or reactive to diagnosis
- Diagnostic challenge: overlap with apathy, anosognosia limits self-report, cognitive symptoms of depression mimic dementia ("pseudodementia")
- Cornell Scale for Depression in Dementia (CSDD): validated instrument — uses both patient interview AND caregiver input; preferred over GDS or PHQ-9 in moderate-severe dementia
- NIMH provisional criteria for depression in AD — requires only 3 symptoms (not 5 as in MDD)
Depression vs. Apathy — Critical Distinction
| Feature | Depression | Apathy |
|---|---|---|
| Core feature | Sadness, hopelessness, guilt | Absence of motivation, initiative, interest |
| Emotional tone | Negative affect (dysphoria, crying) | Flat/blunted affect WITHOUT sadness |
| Insight | Often aware of suffering; may be distressed | Typically unaware; not distressed |
| Vegetative symptoms | Appetite/weight change, insomnia, fatigue | Usually absent |
| Suicidal ideation | May be present | Absent |
| Neuroanatomy | Prefrontal cortex, limbic system, raphe nuclei | Anterior cingulate cortex, medial frontal cortex |
| Treatment | SSRIs, behavioral activation | Methylphenidate (limited evidence); structured activities; NOT SSRIs |
| Overlap | Can coexist — ~40% overlap; treat depression component if both present | |
Treatment
- SSRIs preferred: sertraline (50–100 mg), citalopram (10–20 mg), escitalopram (5–10 mg)
- Avoid TCAs: anticholinergic effects worsen cognition; cardiac conduction risk; orthostatic hypotension → falls
- Avoid paroxetine: most anticholinergic SSRI; higher risk of cognitive worsening
- HTA-SADD trial: sertraline and mirtazapine were NOT superior to placebo for depression in AD — suggests SSRIs may be less effective in dementia-related depression than in primary MDD
- Non-pharmacological: behavioral activation, exercise, social engagement, light therapy, music therapy
- ECT: effective for severe, refractory depression in dementia; may transiently worsen cognition
💎 Board Pearl
- Apathy ≠ depression — the #1 distinction boards will test: apathy = no motivation WITHOUT sadness; depression = sadness, hopelessness, guilt; apathy does NOT respond to SSRIs
- Avoid anticholinergic antidepressants in dementia: TCAs (amitriptyline, nortriptyline) and paroxetine worsen cognition by blocking muscarinic receptors
- Depression may represent a prodrome of dementia (especially late-onset first episode) — doubles the risk of subsequent dementia diagnosis
Apathy
Key Features
- Most common NPS across all dementia types: AD 49–72%, bvFTD 62–89%, VaD 40–60%, DLB 35–55%
- Definition: quantitative reduction in goal-directed behavior (behavioral dimension), cognitive activity (cognitive dimension), and emotional responsiveness (affective dimension) lasting ≥4 weeks
- Often underrecognized because patients do not complain (unlike depression)
- Associated with faster cognitive decline, greater functional impairment, and increased caregiver burden
Neuroanatomy
- Anterior cingulate cortex (ACC) — primary hub of motivation; lesions → abulia/akinetic mutism
- Medial prefrontal cortex — initiative and self-generated behavior
- Ventral striatum/nucleus accumbens — reward processing
- Dopaminergic and cholinergic circuits predominantly involved
- In bvFTD: orbitofrontal + medial frontal atrophy correlates with apathy severity
Treatment
| Intervention | Evidence | Details |
|---|---|---|
| Methylphenidate | ADMET 2 trial: modest improvement in apathy (NPI apathy domain); NNT ~6 | 5–20 mg/day; monitor BP, HR, appetite; may improve apathy AND cognition |
| Cholinesterase inhibitors | Modest benefit in AD-related apathy (secondary outcome data) | May help via cholinergic augmentation; not specifically indicated for apathy |
| Structured activities | Best non-pharmacological evidence | Individualized, meaningful activities matched to retained abilities |
| Exercise programs | Moderate evidence | Regular physical activity improves engagement and apathy scores |
| SSRIs | May worsen apathy | Serotonergic excess can blunt motivation → avoid for isolated apathy; appropriate only if depression is comorbid |
💎 Board Pearl
- SSRIs can worsen apathy — if a patient on SSRIs develops worsening apathy, consider reducing or switching (not increasing) the SSRI
- Methylphenidate has the best evidence for pharmacological treatment of apathy in AD (ADMET 2 trial)
- Anterior cingulate cortex lesion → apathy/abulia; severe bilateral ACC lesions → akinetic mutism
Sleep Disturbances
Sundowning
- Increased confusion, agitation, and behavioral disturbance in late afternoon/evening
- Prevalence: 25–66% of AD patients; increases with disease severity
- Pathophysiology: suprachiasmatic nucleus (SCN) degeneration → disrupted circadian rhythm; reduced melatonin secretion
- Contributing factors: fatigue, reduced lighting, caregiver shift changes, unmet needs
Management of Sundowning
- Ensure adequate lighting in late afternoon/evening (bright light therapy 2,500–10,000 lux)
- Maintain regular daily schedule and sleep-wake routine
- Limit caffeine and daytime napping
- Melatonin 0.5–5 mg at bedtime (mixed evidence; may help circadian entrainment)
- Trazodone 25–50 mg at bedtime (commonly used; modest evidence)
REM Sleep Behavior Disorder (RBD)
- Core feature of synucleinopathies: DLB, PDD, MSA
- Dream enactment behavior due to loss of normal REM atonia
- RBD may precede dementia/parkinsonism by 10–15 years (prodromal marker)
- Idiopathic RBD → >80% phenoconvert to synucleinopathy within 15 years
- Diagnosis: polysomnography showing REM without atonia (RSWA) + clinical history
- Treatment: melatonin 3–12 mg (first-line, safe); clonazepam 0.25–1 mg (second-line; caution in dementia — sedation, falls, respiratory depression)
- Safety: remove sharp/dangerous objects from bedside; bed rails; mattress on floor if needed
Insomnia Management in Dementia
| Approach | Recommendation | Details |
|---|---|---|
| Sleep hygiene | First-line | Consistent sleep/wake times, daytime activity/light exposure, limit naps, quiet dark room |
| Light therapy | First-line | Morning bright light (2,500–10,000 lux); helps circadian entrainment |
| Melatonin | Consider | 0.5–5 mg; low side-effect profile; variable efficacy |
| Trazodone | Consider | 25–50 mg; mildly sedating; minimal anticholinergic effects |
| Suvorexant (Belsomra) | Consider | Orexin antagonist; RCT data in AD insomnia; 10–20 mg |
| Benzodiazepines | AVOID | Worsen cognition, increase fall risk, paradoxical agitation, respiratory depression |
| Anticholinergic sleep aids | AVOID | Diphenhydramine (Benadryl), hydroxyzine — worsen cognition, delirium risk |
💎 Board Pearl
- RBD + dementia = synucleinopathy (DLB or PDD) until proven otherwise; RBD is a supportive diagnostic criterion for DLB and a strong prodromal marker
- Avoid benzodiazepines for insomnia in dementia — worsen cognition, increase falls, cause paradoxical agitation; melatonin and trazodone are safer alternatives
- Sundowning pathophysiology: SCN degeneration → disrupted circadian rhythm + reduced melatonin — bright light therapy addresses the underlying mechanism
Comprehensive Pharmacological Management
Medication Overview Table
| Medication | Class | Indication | Dose Range | Key Side Effects | Warnings |
|---|---|---|---|---|---|
| Brexpiprazole | Atypical antipsychotic | AD agitation (FDA 2023) | 0.5–2 mg/day | Weight gain, somnolence, nasopharyngitis | Black box: increased mortality in elderly dementia |
| Pimavanserin | 5-HT2A inverse agonist | PD psychosis (FDA 2016) | 34 mg/day | Peripheral edema, nausea, confusion | QTc prolongation; avoid with strong CYP3A4 inhibitors |
| Quetiapine | Atypical antipsychotic | Psychosis, agitation (off-label) | 12.5–100 mg/day | Sedation, orthostatic hypotension, metabolic syndrome | Black box; preferred in DLB/PDD (low D2 affinity) |
| Citalopram | SSRI | Agitation, depression | 10–20 mg/day | QTc prolongation, cognitive worsening at 30 mg | FDA max 20 mg in >60 yr; CitAD effective dose was 30 mg |
| Sertraline | SSRI | Depression | 25–100 mg/day | GI upset, sexual dysfunction | HTA-SADD: not superior to placebo in AD depression |
| Methylphenidate | Stimulant | Apathy | 5–20 mg/day | Appetite suppression, insomnia, tachycardia | Monitor cardiovascular; ADMET 2 showed modest benefit |
| Trazodone | SARI | Insomnia, agitation | 25–150 mg/day | Orthostatic hypotension, sedation | Priapism (rare); minimal anticholinergic effects |
| Melatonin | Neurohormone | Insomnia, sundowning, RBD | 0.5–12 mg | Daytime sleepiness, headache | First-line for RBD; safe profile; variable efficacy for insomnia |
| Dextromethorphan/quinidine | Sigma-1/NMDA agonist | Pseudobulbar affect (FDA); agitation (off-label) | 20/10 mg BID | Dizziness, nausea, diarrhea | QTc prolongation; CYP2D6 interactions |
| Carbamazepine | Anticonvulsant | Agitation/aggression (off-label) | 200–600 mg/day | Sedation, hyponatremia, ataxia | Drug interactions (CYP inducer); blood dyscrasias; HLA-B*1502 screening |
| Valproic acid | Anticonvulsant | Agitation (off-label) | 250–1000 mg/day | Sedation, tremor, weight gain | No evidence of benefit; APA recommends against use for dementia agitation |
Clinical Pearl
- Valproic acid should NOT be used for agitation in dementia — RCTs showed no benefit over placebo with significant side effects (sedation, accelerated brain volume loss); APA guidelines recommend against its use
- Start all psychotropics at the lowest effective dose; titrate slowly ("start low, go slow"); reassess need regularly and attempt dose reduction/discontinuation every 3–6 months
💎 Board Pearl
- Know the only FDA-approved medications: brexpiprazole (AD agitation), pimavanserin (PD psychosis), dextromethorphan/quinidine (pseudobulbar affect) — everything else is off-label
- Valproic acid = no benefit for dementia agitation and may accelerate brain atrophy — a common board distractor
Non-Pharmacological Interventions
Evidence-Based Approaches
| Intervention | Evidence Level | Target Symptoms | Details |
|---|---|---|---|
| Music therapy | Strong (multiple RCTs) | Agitation, anxiety, depression | Personalized playlists (familiar music from ages 18–25); live music > recorded; reduces agitation 30–50% |
| Bright light therapy | Moderate | Sleep disturbance, sundowning, circadian disruption | 2,500–10,000 lux morning exposure; 30–120 min; may improve sleep consolidation and reduce evening agitation |
| Exercise/physical activity | Moderate | Depression, agitation, sleep, apathy | Aerobic exercise 150 min/week; walking programs; resistance training; improves mood and engagement |
| Caregiver training/education | Strong | All NPS (indirect effect) | REACH II, STAR-C programs; teaches communication techniques, trigger management, self-care; reduces NPS and caregiver depression |
| Environmental modification | Moderate | Agitation, wandering, sundowning | Reduce noise/clutter; consistent routine; adequate lighting; familiar objects; safe wandering paths |
| Structured/meaningful activities | Moderate | Apathy, agitation, depression | Tailored to interests and abilities; art therapy, gardening, reminiscence therapy, pet-assisted therapy |
| DICE framework | Expert consensus (APA) | All behavioral symptoms | Systematic approach: Describe, Investigate, Create plan, Evaluate — guides clinical decision-making |
| Aromatherapy (lavender, lemon balm) | Limited | Agitation | Some positive small trials; safe to use; not robust evidence |
💎 Board Pearl
- Non-pharmacological interventions are always first-line for NPS in dementia — APA, AGS, and AAN guidelines all recommend trying non-pharm approaches before medications
- Music therapy has the strongest evidence base among non-pharmacological interventions for agitation; personalized playlists using music from the patient's young adulthood are most effective
Medicolegal & Ethical Issues
Capacity Assessment
- Capacity is decision-specific — a patient may have capacity for one type of decision but not another
- Capacity is NOT the same as competence: capacity = clinical determination by physician; competence = legal determination by court
- Dementia diagnosis alone does NOT equal incapacity — must assess for each specific decision
- Capacity can fluctuate (especially in DLB with cognitive fluctuations)
Four Elements of Decision-Making Capacity (Appelbaum Criteria)
| Element | Assessment Question | Clinical Approach |
|---|---|---|
| Understanding | Can the patient comprehend relevant information? | Ask patient to explain the condition, options, risks/benefits in own words |
| Appreciation | Does the patient recognize how information applies to their situation? | Assess for denial, delusions, or inability to apply information to self |
| Reasoning | Can the patient weigh options and consider consequences? | Ask how they reached their decision; evaluate logical process |
| Expressing a choice | Can the patient communicate a consistent decision? | Can state a preference; consistent over time (not fluctuating wildly) |
Types of Capacity in Dementia
| Capacity Type | When Typically Lost | Assessment Tools | Key Considerations |
|---|---|---|---|
| Medical decision-making | Moderate-to-severe dementia | MacCAT-T (MacArthur Competence Assessment Tool — Treatment) | Use supported decision-making when possible; maximize understanding with plain language |
| Financial capacity | Often lost EARLY (mild dementia) | Financial Capacity Instrument (FCI) | Among the first capacities lost; vulnerable to exploitation; may need financial POA early |
| Testamentary capacity | Variable; requires: know nature/extent of assets, natural heirs, consequences of will | Clinical interview; cognitive testing | Legal standard is relatively LOW — dementia patients may retain testamentary capacity |
| Driving capacity | Mild-to-moderate dementia | Driving evaluation; AAN practice parameter | CDR ≥1 = increased crash risk; refer for on-road evaluation; state reporting varies |
| Consent to research | Moderate dementia | MacCAT-CR | Legally authorized representative may consent; assent should still be sought |
Driving & Dementia (AAN Practice Parameter)
- CDR 0.5 (very mild): increased risk but not automatic restriction; recommend driving evaluation
- CDR ≥1 (mild or worse): substantially increased crash risk — should generally NOT drive
- Risk factors for unsafe driving: CDR ≥1, caregiver concern, history of crashes/traffic violations, reduced driving exposure, aggressive/impulsive behavior
- On-road driving evaluation is the gold standard for driving fitness assessment
- Reporting requirements vary by state: some mandatory, some permissive, some none — know your state law
- Physician should document counseling about driving risk; involve family
Advance Directives & Legal Planning
| Document | Purpose | Timing |
|---|---|---|
| Healthcare proxy / Durable POA for healthcare | Designates someone to make medical decisions when patient cannot | EARLY — while patient still has capacity |
| Living will / Advance directive | Documents patient's wishes for future care (resuscitation, feeding tubes, ventilation) | Early; should be revisited periodically |
| Durable POA for finances | Designates someone to manage financial affairs | EARLY — financial capacity lost early in dementia |
| Guardianship / Conservatorship | Court-appointed decision-maker when no advance planning done | Last resort; costly and slow; removes patient autonomy |
Clinical Pearl
- Financial capacity is among the first to decline in dementia — counsel families to establish durable POA for finances early in the disease course, even while the patient is still functionally independent in other areas
- Guardianship is the option of last resort — advance planning (POA, advance directives) should be completed at diagnosis when the patient retains capacity
💎 Board Pearl
- Appelbaum's 4 elements of capacity: Understanding, Appreciation, Reasoning, Expressing a choice — all four must be present for intact decision-making capacity
- Capacity vs. competence: capacity = clinical (physician determines); competence = legal (court determines) — boards test this distinction
- CDR ≥1 = should not drive (AAN practice parameter) — on-road evaluation is gold standard; physician reporting requirements vary by state
- Financial capacity is lost early in mild dementia — board-favorite question; establish financial POA early
- Dementia diagnosis ≠ incapacity — always assess capacity for each specific decision individually
References
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