Neuropsychiatric symptoms (NPS) such as depression, anxiety, apathy, agitation, hallucinations, and delusions are common non-cognitive manifestations of neurological disorders.¹ These symptoms, arising from complex interactions between neurobiological, psychological, and social factors, substantially affect patient quality of life and clinical outcomes.² They often emerge early, sometimes preceding cognitive or motor decline, and are strongly associated with increased morbidity, institutionalization, and healthcare costs.³

Caregivers, who are typically family members in the Indian context, face significant emotional, physical, and financial strain while managing patients with NPS.⁴ The chronic and unpredictable course of these symptoms frequently contributes to caregiver stress, burnout, and psychiatric morbidity.^5,6 Instruments such as the Neuropsychiatric Inventory–Questionnaire (NPI-Q) allow systematic assessment of both symptom severity and caregiver distress,^7,8 while the Zarit Burden Interview (ZBI) provides a standardized measure of perceived caregiver burden.⁹

Evidence from dementia, stroke, Parkinson’s disease, and epilepsy suggests that NPS are more predictive of caregiver distress than cognitive or functional impairment alone. Studies have consistently shown a direct correlation between symptom severity, particularly agitation and psychosis, and caregiver burden scores.^10,11 However, most research has focused on single disease groups, whereas real-world clinical settings frequently encounter diverse neurological conditions where NPS co-occur.

Given India’s sociocultural context of extended families, limited institutional support, and high reliance on informal caregiving, examining NPS across neurological disorders and their association with caregiver burden has important implications for clinical management and policy. This study was therefore designed to assess the prevalence and profile of NPS in patients with neurological illnesses and to explore their relationship with caregiver burden in a tertiary care hospital setting.

Study Design and Setting

This was a hospital-based, cross-sectional study conducted in the Department of Neurology at Indira Gandhi Medical College (IGMC), Shimla, between June 2020 and May 2021. The study was approved by the Institutional Ethics Committee, and written informed consent was obtained from all participants and their caregivers prior to inclusion.

Participants

A total of 80 consecutive patient–caregiver dyads were recruited. Eligible patients were adults diagnosed with neurological disorders (e.g., dementia, stroke, Parkinson’s disease, epilepsy, or other chronic neurological illnesses) who presented with at least one neuropsychiatric symptom. Each patient was required to have a primary caregiver, defined as an individual involved in providing daily assistance or supervision for a minimum of six months. Patients with comorbid severe systemic illnesses or caregivers unwilling to participate were excluded.

Tools and Instruments

• Addenbrooke’s Cognitive Examination–III (ACE-III): Used to assess global cognitive functioning.^12,13
• Barthel Index (BI): Administered to evaluate functional independence in activities of daily living.¹⁴
• Neuropsychiatric Inventory–Questionnaire (NPI-Q): Used for identifying the presence and severity of neuropsychiatric symptoms as well as associated caregiver distress.^7,8
• Zarit Burden Interview (ZBI, 22-item): Applied to quantify subjective caregiver burden across emotional, social, and financial domains.⁹

Data Collection

Demographic and clinical data of patients (age, sex, education, residence, socioeconomic status, duration of illness) and caregivers (relationship to patient, co-residence status, time spent caregiving) were recorded. Each patient underwent cognitive and functional assessment, followed by administration of the NPI-Q to both patient and caregiver. Caregivers subsequently completed the ZBI.

Statistical Analysis

Data were analyzed using SPSS version XX (IBM Corp., Armonk, NY, USA). Descriptive statistics were applied to summarize demographic and clinical characteristics. Group differences were examined using chi-square or Fisher’s exact test for categorical variables and ANOVA for continuous variables. Associations between NPI-Q severity, caregiver distress, and ZBI scores were assessed using correlation analyses. A p-value of <0.05 was considered statistically significant

Sociodemographic Characteristics

The study included 80 patients with neurological disorders and their primary caregivers. The mean age of patients was 61.06 ± 22.39 years (range: 18–91), with two-thirds (66.3%) above 60 years. Females constituted 60% of the patient group (female:male ratio 1.5:1). The mean education level was 6.4 years, and the majority were married (78.8%), while 20% were single.

Caregivers had a mean age of 46.01 ± 11.66 years (range: 19–71). Females were slightly over-represented (57.5%), and their mean years of education was 8.5. Most caregivers were married (91.3%).

The most frequent caregiver–patient relationship was son (28.8%), followed by spouse (22.5%), daughter-in-law (16.3%), and mother (12.5%).

Neurological Diagnoses

Dementia was the most common diagnosis (60%), followed by seizure disorder (28.8%). Less frequent conditions included alcohol-induced amnestic syndrome (5%), Parkinson’s disease (3.8%), and cerebrovascular disease (2.5%).

Clinical Profile of Dementia Patients

The mean duration of illness among dementia patients (n=48) was 3.08 ± 1.57 years, with mean age at onset of 72.37 ± 7.60 years. Most patients had mild cognitive impairment (60.4%), followed by moderate (37.5%) and severe impairment (2.1%).

Assessment of functional ability showed that over half (52.1%) had moderate dependency, 29.2% mild dependency, and 14.6% severe dependency; only 4.2% were fully independent.

The most prevalent NPS in dementia were irritability (79.2%), sleep disturbances (72.9%), delusions (50.0%), anxiety (35.4%), and agitation (35.4%). Less frequent symptoms included motor disturbances (10.4%) and hallucinations (16.7%).

Caregiver burden was considerable: 39.6% reported mild-to-moderate burden, 35.4% moderate-to-severe, 22.9% little/no burden, and 2.1% severe burden. Longer illness duration (p=0.0217) and greater dependency in activities of daily living (p=0.0147) were significantly associated with higher burden. Cognitive impairment showed a trend but was not statistically significant (p=0.071).

Clinical Profile of Seizure Disorder Patients

Among seizure disorder patients (n=23), mean duration of illness was 6.81 ± 6.66 years, with mean age at onset of 22.56 ± 8.76 years. Most had preserved cognition (69.6% no impairment), while 30.4% showed mild-to-severe impairment.

On the Barthel Index, nearly half (47.8%) were fully independent, 26.1% had mild dependency, 21.7% moderate, and 4.3% severe.

The most common NPS were irritability (69.6%), anxiety (60.9%), depression (52.2%), and apathy (34.8%). Less frequent were hallucinations (13.0%), disinhibition (8.7%), elation (8.7%), and motor disturbances (4.3%).

Caregiver burden was low for most: 60.9% reported little/no burden, while 21.7% experienced severe burden. Dependency in activities of daily living was significantly associated with higher burden (p=0.0102). Duration of illness (p=0.086) and cognitive impairment (p=0.055) showed no significant associations.

Clinical Profiles of Other Neurological Disorders

Patients with alcohol-induced amnestic syndrome (n=4) had a mean age of 55.25 ± 5.43 years; common NPS included irritability (100%), hallucinations (75%), and nighttime behaviors (75%). Parkinson’s disease patients (n=3) had a mean age of 72.7 ± 5.9 years, with universal irritability and nighttime behaviors, and high rates of hallucinations and delusions (66% each). Cerebrovascular disease patients (n=2) presented with depression and apathy (100%), along with hallucinations (50%) and motor disturbances (50%).

Caregiver burden in these groups ranged from mild to severe, with Parkinson’s disease and amnestic syndrome patients eliciting moderate-to-severe burden in most caregivers.

Correlation of Neuropsychiatric Symptoms and Caregiver Distress

Analysis of NPI-Q severity and caregiver distress revealed that most NPS (apathy, anxiety, delusions, hallucinations, agitation, irritability, elation, disinhibition, motor disturbances, and sleep disturbances) were significantly correlated with caregiver distress (all p<0.01). Depression (p=0.055) and appetite alterations (p=0.08) did not reach statistical significance.

Table 1 - Patient and Caregiver Demographics

Table 2 - Caregiver Burden (Dementia)

Table 3 - Clinical Profile (Dementia)

Table 4 - Dementia Associations with Caregiver Burden

Table 5 - Caregiver Burden (Seizure Disorder)

Table 6 - Clinical Profile (Seizure Disorder)

Table 7 - Seizure Disorder Associations with Caregiver Burden

Table 8 - Clinical Profiles of Alcohol Amnestic Syndrome, Parkinson’s Disease, and Cerebrovascular Disease

Table 9 - Correlation of NPI Symptoms with Caregiver Distress

This study examined the prevalence and clinical profile of neuropsychiatric symptoms (NPS) across various neurological disorders and their association with caregiver burden in a tertiary care hospital setting. The findings demonstrate that NPS are highly prevalent, with dementia patients most affected, and that caregiver burden is significantly linked to symptom severity, functional dependence, and illness duration.

In our sample, dementia was the most frequent diagnosis, accounting for 60% of patients. Irritability and sleep disturbances were the most common NPS in dementia, reported in nearly three-fourths of cases. These results corroborate earlier findings by Karttunen et al.¹⁵ and Tan et al.¹⁶ who noted that irritability, agitation, and sleep-related disturbances were among the most frequent behavioral manifestations in dementia cohorts. Delusions and anxiety were also common, affecting about half and one third of patients respectively, underscoring the broad spectrum of psychiatric manifestations in dementia. The present study reaffirms that caregiver burden is high in chronic neurological illnesses, particularly dementia. More than one-third of caregivers of dementia patients reported moderate-to-severe burden, with functional dependency emerging as the strongest predictor. (p=0.0147) This echoes prior findings by Germain et al.¹⁷ who in their study found that the two most important variables contributing to the carer burden were the behavioral and psychological symptoms and the impaired activities of daily living associated with Alzheimer’s dementia. Longer illness duration also significantly correlated with greater burden, reflecting the cumulative strain of prolonged caregiving. (p=0.0217)

In seizure disorder, irritability (69.5%) and anxiety (60.8%) predominated, followed by depression(52%). These findings are consistent with prior reports by Tellez-Zenteno et al.¹⁸ and Puka et al.¹⁹ who found that comorbid anxiety and mood disturbances are common in epilepsy. Interestingly, in seizure disorder, overall caregiver burden was lower, but dependency in daily activities remained significantly associated with burden.(p=0.01) This highlights that functional impairment, regardless of the underlying neurological condition, is a key determinant of caregiver stress.

In smaller groups such as Parkinson’s disease, alcohol-induced amnestic syndrome, and cerebrovascular disease, irritability, hallucinations, depression, and sleep disturbances emerged as most common neuropsychiatric symptoms, mirroring existing literature on these conditions.^20,21,22 In these patients, caregiver burden was generally moderate to severe, particularly when hallucinations and irritability were prominent, consistent with Schrag et al.²¹ who found that Parkinson’s disease symptoms that most strongly associated with greater caregiver-burden were mental health problems, including hallucinations, episodes of confusion, and depression.

Significant correlation between NPI and NPI-D was observed for nearly all symptom domains with the exception of depression and appetite changes. Psychotic symptoms like delusions, hallucinations, agitation demonstrated the strongest associations. Previously, Matsumoto et al.⁵ also reported that delusion, agitation/aggression, apathy/ indifference, irritability/lability and aberrant motor behavior showed a significant correlation between the NPI and NPI-D scores. The strength of these associations underscores the importance of early identification and management of such symptoms in clinical practice.

This study demonstrates that neuropsychiatric symptoms are not only highly prevalent in patients with neurological disorders but also exert a profound influence on the quality of life of caregivers. Dementia emerged as the most common diagnosis, with irritability, sleep disturbances, and delusions being particularly frequent. Importantly, functional dependency and longer illness duration were identified as consistent predictors of caregiver burden across diagnostic categories. These findings reinforce that it is not cognitive decline alone, but the combination of behavioral disturbances and loss of independence, that determines the magnitude of caregiver strain.

Although caregiver burden was highest among those caring for dementia patients, the presence of prominent neuropsychiatric symptoms in conditions such as epilepsy, Parkinson’s disease, alcohol-induced amnestic syndrome, and cerebrovascular disease also led to significant distress. This suggests that the psychosocial impact of NPS transcends diagnostic boundaries.

The results underscore the urgent need for early recognition and targeted management of behavioral and psychological symptoms in neurological practice. In addition to pharmacological interventions, caregiver education, counseling, and structured support programs should be prioritized to mitigate the adverse effects of long-term caregiving. Addressing caregiver well-being is not only ethically imperative but also essential for optimizing patient outcomes and reducing healthcare burden

The strengths of this study include its comprehensive assessment across multiple neurological disorders, use of validated instruments (ACE-III, Barthel Index, NPI-Q, ZBI), and the dyadic evaluation of both patients and caregivers. By including diverse conditions beyond dementia, it provides a broader picture of the caregiver experience in neurological illness.

However, certain limitations should be acknowledged.

1. Heterogeneous Diagnostic Groups: The study included patients with varied neurological conditions, resulting in small sample sizes for some subgroups (e.g., Parkinson’s disease, cerebrovascular disease). This limits the ability to generalize findings for specific disorders.
2. Cross-Sectional Design: As a cross-sectional study, it captures a snapshot in time and cannot evaluate longitudinal changes or causal relationships between variables.
3. Lack of In-Depth Disorder-Specific Assessment: Detailed diagnostic tools tailored to individual conditions (e.g., Clinical Dementia Rating Scale for dementia severity, seizure frequency/type in epilepsy) were not employed, limiting granularity of subgroup analysis.

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