Hostname: page-component-cd9895bd7-jn8rn Total loading time: 0 Render date: 2024-12-25T04:24:53.390Z Has data issue: false hasContentIssue false

A systematic review of the relationship between behavioral and psychological symptoms (BPSD) and caregiver well-being

Published online by Cambridge University Press:  27 June 2016

Alexandra Feast*
Affiliation:
Division of Psychiatry, University College London, London, UK
Esme Moniz-Cook
Affiliation:
Faculty of Health and Social Care, University of Hull, Hull, UK
Charlotte Stoner
Affiliation:
Research Department of Clinical, Educational, and Health Psychology, University College London, London, UK
Georgina Charlesworth
Affiliation:
Research Department of Clinical, Educational, and Health Psychology, University College London, London, UK
Martin Orrell
Affiliation:
Institute of Mental Health, University of Nottingham, Nottingham, UK
*
Correspondence should be addressed to: Alexandra Feast, 6th Floor, Maple House, 149 Tottenham Court Road, London W1T 7NF, UK. Phone: 0300 555 1200; ext 64491. Email: [email protected].
Get access

Abstract

Background:

Behavioral and psychological symptoms in dementia (BPSD) are important predictors of institutionalization as well as caregiver burden and depression. Previous reviews have tended to group BPSD as one category with little focus on the role of the individual symptoms. This review investigates the role of the individual symptoms of BPSD in relation to the impact on different measures of family caregiver well-being.

Methods:

Systematic review and meta-analysis of papers published in English between 1980 and December 2015 reporting which BPSD affect caregiver well-being. Paper quality was appraised using the Downs and Black Checklist (1998).

Results:

Forty medium and high quality quantitative papers met the inclusion criteria, 16 were suitable to be included in a meta-analysis of mean distress scores. Depressive behaviors were the most distressing for caregivers followed by agitation/aggression and apathy. Euphoria was the least distressing. Correlation coefficients between mean total behavior scores and mean distress scores were pooled for four studies. Irritability, aberrant motor behavior and delusions were the most strongly correlated to distress, disinhibition was the least correlated.

Conclusions:

The evidence is not conclusive as to whether some BPSD impact caregiver well-being more than others. Studies which validly examined BPSD individually were limited, and the included studies used numerous measures of BPSD and numerous measures of caregiver well-being. Future research may benefit from a consistent measure of BPSD, examining BPSD individually, and by examining the causal mechanisms by which BPSD impact well-being by including caregiver variables so that interventions can be designed to target BPSD more effectively.

Type
Review Article
Copyright
Copyright © International Psychogeriatric Association 2016 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Aarsland, D. et al. (2007). Neuropsychiatric symptoms in patients with Parkinson's disease and dementia: frequency, profile and associated care giver stress. Journal of Neurology, Neurosurgery & Psychiatry, 78, 3642. doi:http://dx.doi.org/10.1136/jnnp.2005.083113.CrossRefGoogle ScholarPubMed
Allegri, R. F. et al. (2006). Neuropsychiatric symptoms as a predictor of caregiver burden in Alzheimer's disease. Neuropsychiatric Disease & Treatment, 2, 105110. doi:10.2147/ndt.s47133.Google Scholar
Almberg, B., Grafstrom, M. and Winblad, B. (1997). Major strain and coping strategies as reported by family members who care for aged demented relatives. Journal of Advanced Nursing, 26, 683691. doi:http://dx.doi.org/10.1046/j.1365-2648.1997.00392.x.Google Scholar
Arango-Lasprilla, J. C., Lehan, T., Drew, A., Moreno, A., Deng, X. and Lemos, M. (2010). Health-related quality of life in caregivers of individuals with dementia from Colombia. American Journal of Alzheimer's Disease and Other Dementias, 25, 556561. doi:10.1177/1533317510382287.Google Scholar
Baiyewu, O. et al. (2003). Behavioral and caregiver reaction of dementia as measured by the neuropsychiatric inventory in Nigerian community residents. International Psychogeriatrics, 15, 399409. doi:10.1017/s1041610203009645.Google Scholar
Baiyewu, O. et al. (2012). Behavioral symptoms in community-dwelling elderly Nigerians with dementia, mild cognitive impairment, and normal cognition. International Journal of Geriatric Psychiatry, 27, 931939. doi: http://dx.doi.org/10.1002/gps.2804.CrossRefGoogle ScholarPubMed
Balieiro, A. P. Jr., Sobreira, E. S. T., Pena, M. C. S., Silva-Filho, J. H. and Vale, F. A. C. (2010). Caregiver distress associated with behavioral and psychological symptoms in mild Alzheimer's disease. Dementia e Neuropsychologia, 4, 238244.Google Scholar
Ballard, C. G. et al. (1995). The aetiology of depression in the carers of dementia sufferers. Journal of Affective Disorders, 35, 5963. doi:10.1016/0165-0327(95)00041-k.Google Scholar
Bandeira, D. R., Pawlowski, J., Goncalves, T. R., Hilgert, J. B., Bozzetti, M. C. and Hugo, F. N. (2007). Psychological distress in Brazilian caregivers of relatives with dementia. Aging and Mental Health, 11, 1419. doi:10.1080/13607860600640814.Google Scholar
Berger, G., Bernhardt, T., Weimer, E., Peters, J., Kratzsch, T. and Frolich, L. (2005). Longitudinal study on the relationship between symptomatology of dementia and levels of subjective burden and depression among family caregivers in memory clinic patients. Journal of Geriatric Psychiatry and Neurology, 3, 119128. doi:10.1177/0891988704273375.Google Scholar
Black, W. and Almeida, O. P. (2004). A systematic review of the association between the behavioral and psychological symptoms of dementia and burden of care. International Psychogeriatrics, 16, 295315. doi:10.1017/s1041610204000468.Google Scholar
Bruce, D. G. and Paterson, A. (2000). Barriers to community support for the dementia carer: a qualitative study. International Journal of Geriatric Psychiatry, 15, 451457. doi:10.1002/(sici)1099-1166(200005)15:5<451::aid-gps143>3.0.co;2-k.3.0.CO;2-K>CrossRefGoogle ScholarPubMed
Campbell, P. et al. (2008). Determinants of burden in those who care for someone with dementia. International Journal of Geriatric Psychiatry, 23, 10781085. doi:10.1002/gps.2071.Google Scholar
Cerejeira, J., Lagarto, L. and Mukaetova-Ladinska, E. B. (2012). Behavioral and psychological symptoms of dementia. Frontiers in Neurology, 3, 123. doi:10.3389/fneur.2012.00073.Google Scholar
Chappell, N. L. and Penning, M. (1996). Behavioural problems and distress among caregivers of people with dementia. Ageing & Society, 16, 5773. doi:10.1017/s0144686x00003135.Google Scholar
Chiu, Y. C. et al. (2014). Family caregivers’ sleep disturbance and its associations with multilevel stressors when caring for patients with dementia. Aging & Mental Health, 18, 92101. doi: http://dx.doi.org/10.1080/13607863.2013.837141.Google Scholar
Cohen, J. (1988). Statistical Power Analysis for the Behavioral Sciences, 2nd edn. New York University, New York: Lawrence Erlbaum Associates. doi:10.4324/9780203771587.Google Scholar
Conde-Sala, J. L., Garre-Olmo, J., Turro´-Garriga, O., Vilalta-Franch, J. and Lo´pez-Pousa, S. (2010). Differential features of burden between spouse and adult-child caregivers of patients with Alzheimer's disease: an exploratory comparative design. International Journal of Nursing Studies, 47, 12621273. doi:10.1016/j.ijnurstu.2010.03.001.Google Scholar
Covinsky, K. E. et al. (2003). Patient and caregiver characteristics associated with depression in caregivers of patients with dementia. Journal of General Internal Medicine, 18, 10061014. doi: http://dx.doi.org/10.1111/j.1525-1497.2003.30103.x.CrossRefGoogle ScholarPubMed
Craig, D., Mirakhur, A., Hart, D. J., McIlroy, S. P. and Passmore, A. P. (2005). A cross-sectional study of neuropsychiatric symptoms in 435 patients with Alzheimer's disease. American Journal of Geriatric Psychiatry, 13, 460468. doi:10.1097/00019442- 200506000-00004.Google Scholar
Crellin, N., Charlesworth, G. and Orrell, M. (2014). Measuring family caregiver efficacy for managing behavioral and psychological symptoms in dementia: a psychometric evaluation. International Psychogeriatrics, 26, 93103. doi: http://dx.doi.org/10.1017/s1041610213001646.CrossRefGoogle ScholarPubMed
Davidsdottir, S. R., Snaedal, J., Karlsdottir, G., Atladottir, I. and Hannesdottir, K. (2012). Validation of the Icelandic version of the neuropsychiatric inventory with caregiver distress (NPI-D). Nordic Journal of Psychiatry, 66, 2632. doi: http://dx.doi.org/10.3109/08039488.2011.593100.Google Scholar
Davis, J. D. and Tremont, G. (2007). Impact of frontal systems behavioral functioning in dementia on caregiver burden. The Journal of Neuropsychiatry and Clinical Neurosciences, 19, 4349. doi: http://dx.doi.org/10.1176/jnp.2007.19.1.43.CrossRefGoogle ScholarPubMed
de Vugt, M. E., Riedijk, S. R., Aalten, P., Tibben, A., van Swieten, J. C. and Verhey, F. R. J. (2006). Impact of behavioural problems on spousal caregivers: a comparison between Alzheimer's disease and fronto-temporal dementia. Dementia and Geriatric Cognitive Disorders, 22, 3541. doi:10.1159/000093102.Google Scholar
de Vugt, M. E. et al. (2003). Behavioural disturbances in dementia patients and quality of the marital relationship. International Journal of Geriatric Psychiatry, 18, 149154. doi:10.1002/gps.807.Google Scholar
Donaldson, C., Tarrier, N. and Burns, A. (1998). Determinants of carer stress in Alzheimer's disease. International Journal of Geriatric Psychiatry, 13, 248256. doi:10.1002/(sici)1099-1166(199804)13:4<248::aid-gps770>3.0.co;2-0.Google Scholar
Downs, S. and Black, N. (1998). The feasibility of creating a checklist for the assessment of the methodological quality both of randomised and non-randomised studies of health care interventions. Journal of Epidemiological Community Health, 52, 377384. doi:10.1136/jech.52.6.377.CrossRefGoogle ScholarPubMed
Farran, C. J., Loukissa, D. A., Lindeman, D. A. and McCann, J. (2004). Caring for self while caring for others: the two-track life of coping with Alzheimer's disease. Journal of Gerontological Nursing, 30, 3845. doi:10.3928/0098-9134-20040501-09.Google Scholar
Fauth, E. B. and Gibbons, A. (2014). Which behavioral and psychological symptoms of dementia are the most problematic? Variability by prevalence, intensity, distress ratings, and associations with carer depressive symptoms. International Journal of Geriatric Psychiatry, 29, 263271. doi:10.1002/gps.4002.CrossRefGoogle Scholar
Fuh, J. L., Liu, C. K., Mega, M. S., Wang, S. J. and Cummings, J. L. (2001). Behavioral disorders and caregivers' reaction in Taiwanese patients with Alzheimer's disease. International Psychogeriatrics, 13, 121128. doi: http://dx.doi.org/10.1017/s1041610201007517.CrossRefGoogle ScholarPubMed
Gaugler, J. E. et al. (2011). Does caregiver burden mediate the effects of behavioral disturbances on nursing home admission? The American Journal of Geriatric Psychiatry, 19, 497506. doi:10.1097/jgp.0b013e31820d92cc.Google Scholar
Gilleard, C. J., Belford, H., Gilleard, E., Whittick, J. E. and Gledhill, K. (1984). Emotional distress amongst the supporters of the elderly mental infirm. British Journal of Psychiatry, 145, 172177. doi:http://dx.doi.org/10.1192/bjp.145.2.172.CrossRefGoogle ScholarPubMed
Gitlin, L. N. and Rose, K. (2014). Factors associated with carer readiness to use nonpharmacologic strategies to manage dementia-related behavioral symptoms. International Journal of Geriatric Psychiatry, 29, 93102. doi:http://dx.doi.org/10.1002/gps.3979.CrossRefGoogle ScholarPubMed
Goldberg, D. P. and Hillier, V. F. (1979). A scaled version of the general health questionnaire. Psychological Medicine, 9, 139145. doi:10.1017/s0033291700021644.Google Scholar
Gonzalez-Salvador, M. T., Arango, C., Lyketsos, C. G. and Barba, A. C. (1999). The stress and psychological morbidity of the Alzheimer patient caregiver. International Journal of Geriatric Psychiatry, 14, 701710. doi:10.1002/(sici)1099-1166(199909)14:9<701::aidps5>3.0.co;2-#.3.0.CO;2-#>CrossRefGoogle ScholarPubMed
Haley, W. E., Brown, S. and Levine, E. G. (1987). Family caregiver appraisals of patient behavioral disturbance in senile dementia. Clinical Gerontologist: The Journal of Aging and Mental Health, 6, 2534. doi:10.1300/j018v06n04_04.Google Scholar
Haley, W. E., Levine, E. G., Brown, S. L., Berry, J. W. and Hughes, G. H. (2008). The psychological, social and health consequences of caring for a relative with senile dementia. Journal of the American Geriatrics Society, 35, 405411. doi:10.1111/j.1532-5415.1987.tb04661.x.Google Scholar
Hishikawa, N. et al. (2012). Effects of turmeric on Alzheimer's disease with behavioral and psychological symptoms of dementia. Ayu, 33, 499504. doi: http://dx.doi.org/10.4103/0974-8520.110524.Google Scholar
Huang, S. S., Lee, M. C., Liao, Y. C., Wang, W. F. and Lai, T. J. (2012). Caregiver burden associated with behavioral and psychological symptoms of dementia (BPSD) in Taiwanese elderly. Archives of Gerontology and Geriatrics, 55, 5559. doi: http://dx.doi.org/10.1016/j.archger.2011.04.009.Google Scholar
Jackson, M. A., Fauth, E. B. and Geiser, C. (2014). Comparing the neuropsychiatric inventory and the revised memory and behavior problems checklist for associations with caregiver burden and depressive symptoms. International Psychogeriatrics, 26, 10211031. doi:10.1017/s1041610213002421.CrossRefGoogle ScholarPubMed
Johnson, D. K., Niedens, M., Wilson, J. R., Swartzendruber, L., Yeager, A. and Jones, K. (2013). Treatment outcomes of a crisis intervention program for dementia with severe psychiatric complications: the Kansas bridge project. The Gerontologist, 53, 102112. doi: http://dx.doi.org/10.1093/geront/gns104.Google Scholar
Khoo, S. A., Chen, T. Y., Ang, Y. H. and Yap, P. (2013). The impact of neuropsychiatric symptoms on caregiver distress and quality of life in persons with dementia in an Asian tertiary hospital memory clinic. International Psychogeriatrics, 25, 19911999. doi: http://dx.doi.org/10.1017/s1041610213001518.Google Scholar
Kosberg, J. I., Kaufman, A. V., Burgio, L. D., Leeper, J. and Sun, F. (2007). Family caregiving to those with dementia in rural Alabama: racial similarities and differences. Journal of Aging and Health, 19, 321. doi: 10.1177/0898264306293604.Google Scholar
Kosmala, K. and Kloszewska, I. (2004). The burden of providing care for Alzheimer's disease patients in Poland. International Journal of Geriatric Psychiatry, 19, 191193. doi:10.1002/gps.1054.Google Scholar
Landis, J. R. and Koch, G. G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33, 159174. doi: 10.2307/2529310.Google Scholar
Lee, D. R., McKeith, I., Mosimann, U., Ghosh-Nodyal, A. and Thomas, A. J. (2013). Examining carer stress in dementia: the role of subtype diagnosis and neuropsychiatric symptoms. International Journal of Geriatric Psychiatry, 28, 135141. doi: http://dx.doi.org/10.1002/gps.3799.Google Scholar
Lim, Y. M., Son, G. R., Song, J. A. and Beattie, E. (2008). Factors affecting burden of family caregivers of community-dwelling ambulatory elders with dementia in Korea. Archives of Psychiatric Nursing, 22, 226234. doi: 10.1016/j.apnu.2007.12.005.Google Scholar
Matsumoto, N. et al. (2007). Caregiver burden associated with behavioral and psychological symptoms of dementia in elderly people in the local community. Dementia and Geriatric Cognitive Disorders, 23, 219224. doi:10.1159/000099472.Google Scholar
Mohamed, S., Rosenheck, R., Lyketsos, C. G. and Schneider, L. S. (2010). Caregiver burden in Alzheimer disease: cross-sectional and longitudinal patient correlates. The American Journal of Geriatric Psychiatry, 18, 917927. doi:10.1097/jgp.0b013e3181d5745d.CrossRefGoogle ScholarPubMed
Mourik, J. C., Rosso, S. M., Niermeijer, M. F., Duivenvoorden, H. J., Van Swieten, J. C. and Tibben, A. (2004). Frontotemporal dementia: behavioral symptoms and caregiver distress. Dementia and Geriatric Cognitive Disorders, 18, 299306. doi: http://dx.doi.org/10.1159/000080123.Google Scholar
Muangpaisan, W. et al. (2010). Caregiver burden and needs of dementia caregivers in Thailand: a cross-sectional study. Journal of the Medical Association of Thailand, 93, 601607.Google Scholar
Neundorfer, M. M., McClendon, M. J., Smyth, K. A., Stuckey, J. C., Strauss, M. E. and Patterson, M. B. (2001). A longitudinal study of the relationship between levels of depression among persons with Alzheimer's disease and levels of depression among their family caregivers. Journal of Gerontology Series B - Psychological Sciences and Social Sciences, 56, 301313.Google Scholar
Nygaard, H. A. (1998). Strain on caregivers of demented elderly people living at home. Scandinavian Journal of Primary Health Care, 6, 3337. doi:http://dx.doi.org/10.3109/02813438809009287.Google Scholar
Ornstein, K. and Gaugler, J. E. (2012). The problem with “problem behaviors”:a systematic review of the association between individual patient behavioral and psychological symptoms and caregiver depression and burden within the dementia patient–caregiver dyad. International Psychogeriatrics, 24, 15361552. doi:10.1017/s1041610212000737.Google Scholar
Ornstein, K, Gaugler, J. E., Devanand, N. S., Carolyn, Z. and Yaakov, S. (2012). The differential impact of unique behavioral and psychological symptoms for the dementia caregiver: how and why do patients' individual symptom clusters impact caregiver depressive symptoms? The American Journal of Geriatric Psychiatry, 12, 771286. doi: http://dx.doi.org/10.1016/j.jagp.2013.01.062.Google Scholar
Price, G. R. (1970). Selection and covariance. Nature, 227, 520521. doi:10.1038/227520a0.Google Scholar
Prince, M. (2000). Dementia in developing countries. A consensus statement from the 10/66 Dementia Research Group. International Journal of Geriatric Psychiatry, 15, 1420. doi:http://dx.doi.org/10.1002/(sici)1099-1166 (200001)15:1<14::aid-gps70>3.0.co;2-8.Google Scholar
Quayhagen, M. P. and Quayhagen, M. (1998). Alzheimer's stress: coping with the caregiving role. Gerontologist, 28, 391396. doi:http://dx.doi.org/10.1093/geront/28.3.391.Google Scholar
Reisberg, B., Ferris, S. H, de Leon, M. J. and Crook, T. (1982). The global deterioration scale for assessment of primary degenerative dementia. American Journal of Psychiatry, 139, 11361139. doi: http://dx.doi.org/10.1176/ajp.139.9.1136.Google Scholar
Robinson, K. M., Adkisson, P. and Weinrich, S. (2001). Problem behaviour, caregiver reactions, and impact among caregivers of persons with Alzheimer's disease. Journal of Advanced Nursing, 36, 573582. doi: http://dx.doi.org/10.1046/j.1365-2648.2001.02010.x.Google Scholar
Rocca, P. et al. (2010). Neuropsychiatric symptoms underlying caregiver stress and insight in Alzheimer's disease. Dementia and Geriatric Cognitive Disorders, 30, 5763. doi:10.1159/000315513.Google Scholar
Rymer, S., Salloway, S., Norton, L., Mallow, P., Correia, S. and Monast, D. (2002). Impaired awareness, behavior disturbance, and caregiver burden in Alzheimer disease. Alzheimer Disease and Associated Disorders, 16, 248253. doi: 10.1097/00002093-200210000-00006.CrossRefGoogle ScholarPubMed
Savorani, G., Vulcano, V., Boni, S., Sarti, G. and Ravaglia, G. (1998). Behavioral disorders in dementia patients and their impact on the stress of caregiving relatives: the “ARAD” questionnaire. Archives of Gerontology and Geriatrics, 6, 481485. doi:10.1016/s0167-4943(98)80070-8.Google Scholar
Shaji, K. S., George, R. K., Prince, M. J. and Jacob, K. S. (2009). Behavioral symptoms and caregiver burden in dementia. Indian Journal of Psychiatry, 51, 45. doi: http://dx.doi.org/10.4103/0019-5545.44905.Google Scholar
Sink, K. M., Covinsky, K. E., Barnes, D. E., Newcomer, R. J. and Yaffe, K. (2006). Caregiver characteristics are associated with neuropsychiatric symptoms of dementia. Journal of the American Geriatrics Society, 54, 796803. doi: 10.1111/j.1532-5415.2006.00697.x.Google Scholar
Slachevsky, A. et al. (2013). The CUIDEME study: determinants of burden in chilean primary caregivers of patients with dementia. Journal of Alzheimer's Disease, 35, 297306.Google Scholar
Spiegel, R. et al. (1991). A new behavioral assessment scale for geriatric out- and in-patients: the NOSGER (nurses’ observation scale for geriatric patients). Journal of the American Geriatric Society, 39, 339347. doi: http://dx.doi.org/10.1111/j.1532-5415.1991.tb02897.x.CrossRefGoogle ScholarPubMed
Tan, L. L., Wong, H. B. and Allen, H. (2005). The impact of neuropsychiatric symptoms of dementia on distress in family and professional caregivers in Singapore. International Psychogeriatrics, 17, 253263. doi: 10.1017/s1041610205001523.Google Scholar
Teri, L. (1997). Behavior and caregiver burden: behavioral problems in patients with Alzheimer disease and its association with caregiver distress. Alzheimer Disease and Associated Disorders, 11, 3538.Google Scholar
Teri, L., Truax, P., Logsdon, R., Uomoto, J., Zarit, S. and Vitaliano, P. P. (1992). Assessment of behavioral problems in dementia: the revised memory and behavior problems checklist. Psychology and Aging, 7, 622. doi: 10.1037/0882-7974.7.4.622.Google Scholar
Waite, A., Bebbington, P., Skelton-Robinson, M. and Orrell, M. (2004). Social factors and depression in carers of people with dementia. International Journal of Geriatric Psychiatry, 19, 582587. doi: http://dx.doi.org/10.1002/gps.1136.Google Scholar
Supplementary material: File

Feast supplementary material

Table S1

Download Feast supplementary material(File)
File 28.8 KB
Supplementary material: File

Feast supplementary material

Table S2

Download Feast supplementary material(File)
File 19.3 KB
Supplementary material: File

Feast supplementary material

Table S3

Download Feast supplementary material(File)
File 15.2 KB