|Year : 2021 | Volume
| Issue : 2 | Page : 56-61
Association of caregiver distress with behavioral and psychological symptoms of dementia-A cross-sectional correlational study from South India
Sripathi Santhosh Goud, Vishal Indla, Manjiri Deshpande, Indla Ramasubba Reddy
Department of Psychiatry, Indlas VIMHANS Hospital, Vijayawada, Andhra Pradesh, India
|Date of Submission||17-Jun-2021|
|Date of Decision||31-Aug-2021|
|Date of Acceptance||01-Sep-2021|
|Date of Web Publication||22-Oct-2021|
Dr. Sripathi Santhosh Goud
Department of Psychiatry, Indlas VIMHANS Hospital, Vijayawada - 520 002, Andhra Pradesh
Source of Support: None, Conflict of Interest: None
Abstract Context: Non-cognitive symptoms of dementia, also known as behavioural and psychological symptoms of dementia (BPSD) are a less researched topic in developing countries like India. These symptoms not only affect the ability to sustain daily activities and reduce the quality of life but also increase morbidity and mortality in patients with dementia. Aims: The study aimed to assess the prevalence of BPSD and various correlates associated with the severity of BPSD and caregiver distress. Subjects and Methods: It was a cross-sectional, correlational study done on 80 consecutive patients and their caregivers attending the memory clinic of Indlas VIMHANS Hospital, Vijayawada. A semi-structured proforma to collect socio-demographic data, Mini-Mental Status Examination (MMSE), The Neuropsychiatric Inventory-Questionnaire (NPI-Q), and Everyday Abilities Scale for India (EASI) were used in the study. Descriptive and inferential statistical analyses were done to find the correlation between different study variables. Results: BPSD were reported in all the dementia patients. Night-time behaviour disturbances (100%), hallucinations (86.25%), irritability (76.25%), delusions (75%), and agitation (76.25%) were more commonly reported BPSD. There was a positive correlation between BPSD severity and caregiver distress on- hallucinations (r=0.661, P<0.001) delusions (r=0.840, P <0.001), agitation (r=0.823, P<0.001), depression (r=0.947, P<0.001), anxiety (r=0.971, P=0.038), disinhibition (r=0.917, P<0.001), irritability (r=0.875, P<0.001), night-time behaviour disturbances (r=0.451, P<0.001), and appetite abnormality (r=0.683, P<0.001) items. On Pearson correlation care giver distress was significantly associated with – age of the patient (r=0.325, P=0.003), MMSE score (r= -0.461, P<0.001), BPSD severity (r=0.780, P<0.001) and EASI score (r=0.475, P<0.001). Severity of BPSD showed significant correlation with- age of the patient (r=0.267, P=0.017), MMSE score (r= -0.269, P=0.016) and EASI score (r=0.356, P<0.001). Conclusion: BPSD are universal in dementia and they impact the quality of the life of the patients and the caregivers. Improvement in BPSD may reduce caregiver distress and improve the quality of care received by patients.
Keywords: Behavioral and psychological symptoms of dementia, caregiver distress, caregivers, dementia, neuropsychiatric symptoms
|How to cite this article:|
Goud SS, Indla V, Deshpande M, Reddy IR. Association of caregiver distress with behavioral and psychological symptoms of dementia-A cross-sectional correlational study from South India. J Indian Acad Geriatr 2021;17:56-61
|How to cite this URL:|
Goud SS, Indla V, Deshpande M, Reddy IR. Association of caregiver distress with behavioral and psychological symptoms of dementia-A cross-sectional correlational study from South India. J Indian Acad Geriatr [serial online] 2021 [cited 2022 Nov 30];17:56-61. Available from: http://www.jiag.com/text.asp?2021/17/2/56/329017
| Introduction|| |
Dementia is a neurodegenerative disorder associated with pathophysiological changes in the brain. It is a syndrome in which there is deterioration in memory, thinking, behavior, and the ability to perform everyday activities. Worldwide around 50 million people have dementia, and nearly 10 million new cases are adding every year-implying one new case every 3.2 s. It is estimated that 5.3 million people >60 have dementia in India in 2020, which is estimated to rise to 6.35 million by 2025 and 13.33 million by 2050.
The symptoms of dementia can be categorized into two major types, which include cognitive and noncognitive symptoms. The most typical cognitive symptom of dementia is impaired memory. International Psychogeriatric Association has designated the term “Behavioral and psychological symptoms of dementia (BPSD)” to the noncognitive or neuropsychiatric symptoms of dementia. BPSD constitutes a significant component irrespective of the type of dementia, and it is the primary reason for consultation with a psychiatrist in dementia patients. Studies suggest that at least 5 out of six patients with dementia develop BPSD during their illness. Both cognitive symptoms and BPSD are highly distressing to the patients and caregivers. Reduction of BPSD is known to produce remarkable improvement in the patients' functional abilities and reduce the distress in caregivers to a greater extent.
Research on distress in caregivers of dementia and BPSD is scarce in India. So, we aimed to study the association of caregiver distress with BPSD and other variables like the duration and severity of dementia and impairment in activities of daily living in dementia patients.
| Materials and Methods|| |
The study had a cross-sectional design. After obtaining approval from the Institutional Ethics Committee, the study was conducted between May 1, 2021–June 30, 2021. The sample consisted of patients diagnosed with dementia and their caregivers who were attending our memory clinic. The sample size of 80 was calculated based on the previous literature for an outcome variable on Pearson correlation between caregiver distress and total BPSD score with minimum correlation of 0.70 in the study domain, 90% statistical power, 5% level of Type I error (α) and 10% of Type II error rate (β). Informed consent was taken from the caregivers of the patients. The inclusion criteria for the caregivers were: (1) those who were more than 18 years, (2) who were serving the patient as a prime caregiver (living with the patient and taking care of him/her) for a minimum period of 6 months, and (3) who were willing to give consent for the study. Those caregivers who were not willing to give consent or already suffering from any kind of psychological illness were excluded from the study. The 2nd author, a qualified psychiatrist, had done a clinical examination of the caregivers before entering into the study to rule out any present and past history of psychological illness. Eighty consecutive patients with dementia and their caregivers fulfilling the inclusion criteria were recruited for the study. A semi-structured pro forma was used to collect the sociodemographic data of the patients and the caregivers. Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition (DSM-5) criteria were used for diagnosing major neurocognitive disorder, the new terminology given for dementia in DSM-5. Mini-mental status examination (MMSE) was administered to the patients to rate the severity of dementia. MMSE was developed by Folstein in 1975. It is a 30-point questionnaire that is used extensively in clinical and research settings to measure cognitive impairment. It has good internal consistency (Cronbach's alpha 0.96) and test-retest reliability (0.80–0.95). Based on MMSE scores, dementia can be categorized as mild (19–23), moderate (10–18), and severe dementia (<9).
Remaining all the questionnaires were administered to the caregivers. The Neuropsychiatric Inventory-Questionnaire (NPI-Q) was administered to rate the severity of BPSD. The Caregiver distress scale (NPI-D), which is a part of NPI-Q, was administered to rate the distress among caregivers. The NPI-Q was developed and cross-validated with the standard NPI to provide a brief assessment of neuropsychiatric symptomology. The NPI-Q was adopted from the NPI, a validated informant-based interview that assesses neuropsychiatric symptoms over the previous month. NPI-Q comprises 12 BPSD items scored on a 3-point scale and the associated caregiver distress on a 5-point scale. It has Cronbach's alpha of 0.88 and good test-retest reliability (0.86). Everyday Abilities Scale for India (EASI) was used to assess functioning for daily livings. It is a 12-item informant-based questionnaire developed by Fillenbum to assess everyday functionality in dementia patients in India. This test has good internal consistency (Cronbach's alpha 0.82) and test-rest reliability (0.92). Scoring is given as 0 when there is no problem and one indicates a problem in performing the activity. A higher total score reflects a more significant overall disability.
Data entry and analysis were performed using IBM Statistical Package for The Social Sciences (SPSS) for Windows version 22.0 (IBM Corp., Armonk, N.Y., USA) and R environment version 3.2.2 (Vienna, Austria).
Continuous variables were reported as mean with standard deviation (S.D.), and categorical variables were reported as a number with the percentage of the total.
The one-way analysis of variance was employed to determine any statistically significant differences between the means of three or more independent (unrelated) groups. Student t-test (two-tailed, independent) was used to find the significance of study parameters on a continuous scale between two groups (Intergroup analysis). Leven's test for homogeneity of variance was performed to assess the homogeneity of variance. Chi-square/Fisher Exact test was used to find the significance of study parameters on a categorical scale between two or more groups in a nonparametric setting for qualitative data analysis. The relationship between dementia patients' demographics and caregiver distress and caregivers' demographics and caregiver distress were tested using the Pearson correlation. Wilcoxon signed-rank test and Spearman rank-order correlation were used for nonparametric data.
For all analyses, the probability level considered to indicate statistical significance was set at P < 0.05.
| Results|| |
In our study, the mean age of the patients was 71.90 years (SD ± 6.73). More than half (52.5%, n = 42) of the patients were males, and 47.5% (n = 38) of the patients were having living spouses.
The mean duration of dementia was 20.97 months (SD ± 11.26).
62.5% (n = 50) patients had mild dementia and 37.5% (n = 30) moderate dementia at the time of the study. The mean score of total BPSD severity was 16.75 (SD ± 4.41). The mean EASI score was 7.96 (SD ± 2.39) [Table 1].
A majority (46.3%, n = 37) of the caregivers in our study were more than 50 years of age.
About half (52.5%, n = 42) of the caregivers were female. Children were the primary caregivers for more than half of the patients (52.5% n = 42).
About 27.5% (n = 22) of the study subjects were from the upper socioeconomic class, and the rest were from the middle (36.3%, n = 29) and lower socioeconomic class (36.3%, n = 29). The mean score of total caregiver distress was 26.36 (SD ± 6.85) [Table 2].
Association between caregiver distress and behavioral and psychological symptoms of dementia with different study variables
On Pearson correlation, caregiver distress was significantly associated with – age of the patient (r = 0.325, P = 0.003), MMSE score (r = ‒0.461, P < 0.001), BPSD severity (r = 0.780, P < 0.001), and EASI score (r = 0.475, P < 0.001). No statistical significance found between caregiver distress and duration of dementia (r = 0.206, P = 0.067), caregiver age (r = ‒0.053, P = 0.641), gender of the caregiver (P = 0.668), or relationship of the caregiver with the patient (P = 0.469) [Table 3].
|Table 3: Analysis of relationship between caregiver distress and behavioral and psychological symptoms of dementia with other variables|
Click here to view
Severity of BPSD showed significant correlation with age of the patient (r = 0.267, P = 0.017), MMSE score (r = ‒0.269, P = 0.016), and EASI score (r = 0.356, P < 0.001) [Table 3].
Relationship between individual behavioral and psychological symptoms of dementia severity and caregiver distress
[Table 4] shows that all the family members reported nighttime behavior disturbance, whereas apathy (12.5%) followed by euphoria (15%) was the least reported BPSD. There was a positive correlation (P < 0.05) between BPSD severity and caregiver distress on hallucinations, delusions, agitation, depression, anxiety, disinhibition, irritability, nighttime behavior disturbance, and appetite abnormality items. No correlation was found between the severity of euphoria and apathy and distress associated with these two items.
|Table 4: Frequency of behavioral and psychological symptoms of dementia items along with correlation between individual behavioral and psychological symptoms of dementia severity and caregiver distress|
Click here to view
| Discussion|| |
Dementia is two times more common in women than men due to their greater longevity, but our study showed a small male preponderance (52.5 vs. 47.5%). This finding was unlike the other studies done in the past, which found more female patients in their sample.,,,,,, This could be due to the significant gender disparity in health-care expenditure among the elderly in India.
Scales et al. observed that cognitive deficits render the patients with dementia incapable of coping with the environmental demands. As the severity of dementia increases, BPSD severity will also increase. We found a strong correlation between BPSD severity and severity (0.016) of dementia but no association with the duration of dementia (P = 0.084).
In their study on 355 dyads, Pöysti et al. reported male caregivers of dementia experienced a lower burden than female caregivers. Psychological distress levels among family caregivers and exacerbating and alleviating factors varied depending on the gender and kinship of care recipients. In a meta-analysis of 168 empirical studies, Pinquart and Sörensen found that the spouses of the patients reported more physical burden and low psychological well-being than other relationships. We could not find any difference in caregiver distress related to genders or patient relationships.
In a study conducted in a South Indian rural community, all the study participants had experienced at least one BPSD, and apathy, delusion, and agitation were the most common BPSD reported. In our study, caregivers of all the 80 patients (100%) reported at least one BPSD. Hallucinations (86.25%), irritability (76.25%), delusions (75%), and agitation (76.25%) were the common BPSD reported by caregivers. It shows that BPSD is universal in dementia patients and can be found on proper inquiry. Nighttime behavior abnormality was present in all the patients. The prevalence of insomnia in patients with dementia was reported in 20% to 35%. The consequences of insomnia include agitation, risk of falls and fractures, and all these can lead to patient and caregiver distress and early institutionalization.
We found a strong positive correlation of EASI score with both the severity of BPSD (r = 0.356, P < 0.001) and caregiver distress (r = 0.475, P < 0.001), which shows that impairment in activities of daily living causes significant caregiver burden. This finding was similar to the earlier studies done by Shaji et al., Huang et al. and Nagatomo et al.
We found a strong positive correlation between caregiver distress and BPSD score (r = 0.780, P < 0.001), which concords with other studies.,,, Thasleem et al., in their study, observed that 93% of the caregivers reported caregiver burden, and there is a correlation found between BPSD scores and caregiver burden scores. Similar findings were reported by Rosdinom et al. in their study on the Malaysian population and Huang et al. on the Taiwanese elderly.
Shaji et al., in their study, found that caregivers reported more distress with delusional thinking and aggressiveness than other BPSD. They also noted incontinence, impaired basic activities of daily living, wandering, agitation, aggression, and violence were associated with increased caregiver burden. In a study on the Taiwanese elderly by Huang et al., the results showed a statistically significant positive correlation between the total BPSD score and the total caregiver distress score. For individual BPSD, delusions had the highest mean score, followed by agitation/aggression, anxiety, irritability, and depression. In our study, we found night-time behavior disturbances had the highest mean BPSD score and highest caregiver distress score. It was followed by hallucinations, delusions, irritability, agitation, and appetite as the predominant BPSD having higher mean scores than other items. The corresponding distress scores were also high for these five items. Kaufer et al., in their study, reported that irritability, depression, delusions, agitation, and anxiety showed higher mean caregiver distress scores. In a study conducted on 67 patients, Matsumoto et al. observed that agitation, delusions, irritability, disinhibition, and aberrant motor behavior had higher mean NPI-D scores than other items. All these studies showed irritability, agitation/aggression, and delusion were the most common BPSD causing more distress in caregivers.
In summary, we found that BPSD severity and impairment in activities of daily living increase as the severity of dementia increases. Some of the current study findings were different from the earlier studies done in Western countries. The plausible reasons could be the sociocultural differences and family structure present in India. Although BPSD is present in all dementia patients, its frequency and severity vary. Night-time behavior disturbances, agitation, delusions, and hallucinations were more commonly reported BPSD and caused more caregiver distress than other BPSD. Although apathy was reported as the commonest BPSD in the West and some Indian studies done on community samples, caregivers tend to bring patients with more distressing symptoms such as insomnia, delusions, agitation, or violence to the physician's office. Routine screening for BPSD is warranted in the first consultation and during each follow-up visit. Caregivers also need to be evaluated briefly for any kind of distress that hinders the quality of care and quality of life of both the patients and the caregivers.
As ours is a hospital-based study comprising a small sample size, the findings need to be generalized carefully. The comparison between our results and those of earlier studies should be made with caution due to the different study setups, population and scales used. Ours is a cross-sectional study design that may not establish a cause-effect relationship. Psychological distress is a dynamic variable that needs to be studied longitudinally. Large community-based follow-up studies are recommended in the future for better grasping of the problem in the community at large and getting more insights into BPSD and their effect on caregiver burden.
| Conclusions|| |
Psychiatrists and neurologists are the foremost service providers treating patients with dementia. These service providers need to be sensitized about the psychological distress the caregiver's face of patients with dementia. As we found BPSD is universal in dementia, each dementia patient should be assessed appropriately for BPSD and the caregiver for distress. Timely diagnosis and treatment of distress in caregivers may improve the overall quality of care given to the patients. From the government side, it has to strengthen community-based services, establish daycare centers, halfway homes, and provide financial support in social benefit schemes to reduce the burden on the caregivers. Nongovernment organizations working in the field of dementia should encourage the formation of caregiver support groups and conduct regular programs to educate and impart skills to manage the BPSD.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Prince M, Wimo A, Guerchet M, Ali G, Wu Y, Prina M. World Alzheimer Report. The Global Impact of Dementia. An Analysis of Prevalence, Incidence, Cost and Trends. London: Alzheimer's Disease International (ADI); 2015. p. 68-80.
Nulkar A, Paralikar V, Juvekar S. Dementia in India – A call for action. J Glob Health Rep 2019;3:e2019078-0.
Baharudin AD, Din NC, Subramaniam P, Razali R. The associations between behavioural-psychological symptoms of dementia (BPSD) and coping strategy, burden of care and personality style among low-income caregivers of patients with dementia. BMC Public Health 2019;19 Suppl 4:447.
Carrion C, Folkvord F, Anastasiadou D, Aymerich M. Cognitive therapy for dementia patients: A systematic review. Dement Geriatr Cogn Disord 2018;46:1-26.
Shaji KS, George RK, Prince MJ, Jacob KS. Behavioral symptoms and caregiver burden in dementia. Indian J Psychiatry 2009;51:45-9.
] [Full text]
Folstein MF, Folstein SE, McHugh PR. “Mini-mental state” – A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975;12:189-98.
Kaufer DI, Cummings JL, Ketchel P, Smith V, MacMillan A, Shelley T, et al.
Validation of the NPI-Q, a brief clinical form of the neuropsychiatric inventory. J Neuropsychiatry Clin Neurosci 2000;12:233-9.
Cummings JL, Mega M, Gray K, Thompson SR, Carusi DA, Gornbein J. The neuropsychiatric inventory: Comprehensive assessment of psychopathology in dementia. Neurology 1994;44:2308-14.
Fillenbaum GG, Chandra V, Ganguli M, Pandav R, Gilby JE, Seaberg EL, et al
. Development of an activities of daily living scale to screen for dementia in an illiterate rural old population in India. Age Ageing 1999;28:161-8.
Ott A. Incidence and risk of dementia. Am J Epidemiol 1998;147:574-80.
Lopes MA, Bottino CM. Prevalence of dementia in several regions of the world: Analysis of epidemiologic studies from 1994 to 2000. Arq Neuropsiquiatr 2002;60:61-9.
Scales K, Zimmerman S, Miller SJ. Evidence – Based non pharmacological practices to address behavioural and psychological symptoms of dementia. Gerontologist 2018;58 Suppl 1:S88-102.
Pöysti MM, Laakkonen ML, Strandberg T, Savikko N, Tilvis RS, Eloniemi-Sulkava U, et al.
Gender differences in dementia spousal caregiving. Int J Alzheimers Dis 2012;2012:162960.
Iwata N, Horiguchi K. Differences in caregivers' psychological distress and associated factors by care recipients' gender and kinship. Aging Ment Health 2016;20:1277-85.
Pinquart M, Sörensen S. Spouses, adult children, and children-in-law as caregivers of older adults: A meta-analytic comparison. Psychol Aging 2011;26:1-14.
Mayer G, Jennum P, Riemann D, Dauvilliers Y. Insomnia in central neurologic diseases: Occurances and management. Sleep Med Rev 2011;15:369-78.
Molano J, Vaughn BV. Approach to insomnia in patients with dementia. Neurol Clin Pract 2014;4:7-15.
Huang SS, Lee MC, Liao YC, Wang WF, Lai TJ. Caregiver burden associated with behavioral and psychological symptoms of dementia (BPSD) in Taiwanese elderly. Arch Gerontol Geriatr 2012;55:55-9.
Nagatomo I, Akasaki Y, Uchida M, Tominaga M, Hashiguchi W, Takigawa M. Gender of demented patients and specific family relationship of caregiver to patients influence mental fatigue and burdens on relatives as caregivers. Int J Geriatr Psychiatry 1999;14:618-25.
Thasleem SK, Sharma R, Shaji SK. Association between behavioral psychological symptoms of dementia and caregiver burden in South Indian rural community. Med Legal Update 2021;21:1180-6.
Rosdinom R, Zarina MZ, Zanaraiah MS, Marhani M, Suzaily W. Behavioral and psychological symptoms of dementia, cognitive impairement and caregiver burden in patients with dementia. Prev Med 2013;57 (Suppl):S67-9.
Kaufer DI, Cummings JL, Christine D, Bray T, Castellon S, Masterman D, et al.
Assessing the impact of neuropsychiatric symptoms in Alzheimer's disease: The neuropsychiatric inventory caregiver distress scale. J Am Geriatr Soc 1998;46:210-5.
Matsumoto N, Ikeda M, Fukuhara R, Shinagawa S, Ishikawa T, Mori T, et al.
Caregiver burden associated with behavioral and psychological symptoms of dementia in elderly people in the local community. Dement Geriatr Cogn Disord 2007;23:219-24.
[Table 1], [Table 2], [Table 3], [Table 4]