Caregiver Burden in Amyotrophic Lateral Sclerosis is More Dependent on Patients' Behavioral Changes Than Physical Disability: a Comparative Study

Overview

Journal BMC Neurol

Publisher Biomed Central

Specialty Neurology

Date 2012 Dec 11

PMID 23216745

Citations 37

Authors

Patricia Lillo

Eneida Mioshi

John R Hodges

Affiliations

Soon will be listed here.

Abstract

Background: Behavioral changes in patients with amyotrophic lateral sclerosis (ALS) mirror those found in frontotemporal dementia (FTD). Considering the high rate of neuropsychiatric symptoms found in ALS patients, this paper examines whether caregiver burden is associated with behavioral changes over and above the physical disability of patients with ALS, and if the presence of caregivers' depression, anxiety and stress also impacts on caregiver burden.

Methods: 140 caregivers of patients with ALS participated in a postal survey investigating patients' neuropsychiatric symptoms (Cambridge Behaviour Inventory Revised CBI-R), motor function (Amyotrophic Lateral Sclerosis Functional Rating Scale Revised - ALSFRS-R), caregiver burden (Zarit Burden Interview), and caregiver mood (Depression, Anxiety and Stress Scale- DASS21). Seventy four percent of them were caregivers of patients with limb onset and 25.7% were caregivers of patients with bulbar onset.

Results: Moderate to severe behavioral changes were reported in 10-40% of patients with ALS. The levels of depression, anxiety and stress in the caregivers reached 20%. Burden was high in 48% of the caregivers. The strongest predictor of high caregiver burden was ALS patients' abnormal behavior rather than physical disability, with an odds ratio of 1.4, followed by caregivers' stress.

Conclusions: Our study has identified that behavioral changes (e.g. disinhibition, impulsivity) and caregiver stress have greater impact on caregiver burden than level and pattern of physical disability.

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References

Trail M, Nelson N, Van J, Appel S, Lai E . A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options. J Neurol Sci. 2003; 209(1-2):79-85. DOI: 10.1016/s0022-510x(03)00003-0. View

Renton A, Majounie E, Waite A, Simon-Sanchez J, Rollinson S, Gibbs J . A hexanucleotide repeat expansion in C9ORF72 is the cause of chromosome 9p21-linked ALS-FTD. Neuron. 2011; 72(2):257-68. PMC: 3200438. DOI: 10.1016/j.neuron.2011.09.010. View

Huisman M, de Jong S, van Doormaal P, Weinreich S, Jurgen Schelhaas H, van der Kooi A . Population based epidemiology of amyotrophic lateral sclerosis using capture-recapture methodology. J Neurol Neurosurg Psychiatry. 2011; 82(10):1165-70. DOI: 10.1136/jnnp.2011.244939. View

Bozeat S, Gregory C, Ralph M, Hodges J . Which neuropsychiatric and behavioural features distinguish frontal and temporal variants of frontotemporal dementia from Alzheimer's disease?. J Neurol Neurosurg Psychiatry. 2000; 69(2):178-86. PMC: 1737062. DOI: 10.1136/jnnp.69.2.178. View

Knutson K, Zamboni G, Tierney M, Grafman J . Neural correlates of caregiver burden in cortical basal syndrome and frontotemporal dementia. Dement Geriatr Cogn Disord. 2008; 26(5):467-74. PMC: 2596937. DOI: 10.1159/000167268. View

DeJesus-Hernandez M, Mackenzie I, Boeve B, Boxer A, Baker M, Rutherford N . Expanded GGGGCC hexanucleotide repeat in noncoding region of C9ORF72 causes chromosome 9p-linked FTD and ALS. Neuron. 2011; 72(2):245-56. PMC: 3202986. DOI: 10.1016/j.neuron.2011.09.011. View

Pagnini F, Rossi G, Lunetta C, Banfi P, Castelnuovo G, Corbo M . Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis. Psychol Health Med. 2010; 15(6):685-93. DOI: 10.1080/13548506.2010.507773. View

Gibbons Z, Richardson A, Neary D, Snowden J . Behaviour in amyotrophic lateral sclerosis. Amyotroph Lateral Scler. 2008; 9(2):67-74. DOI: 10.1080/17482960701642437. View

Wedderburn C, Wear H, Brown J, Mason S, Barker R, Hodges J . The utility of the Cambridge Behavioural Inventory in neurodegenerative disease. J Neurol Neurosurg Psychiatry. 2007; 79(5):500-3. DOI: 10.1136/jnnp.2007.122028. View

10.

Dunkin J . Dementia caregiver burden: a review of the literature and guidelines for assessment and intervention. Neurology. 1998; 51(1 Suppl 1):S53-60; discussion S65-7. DOI: 10.1212/wnl.51.1_suppl_1.s53. View

11.

Goldstein L, Adamson M, Jeffrey L, Down K, Barby T, Wilson C . The psychological impact of MND on patients and carers. J Neurol Sci. 1998; 160 Suppl 1:S114-21. DOI: 10.1016/s0022-510x(98)00209-3. View

12.

Nakagawa Y, Uozumi T, Tsuji S . [Quality of life and burden in caregivers for ALS patients in Japan]. Rinsho Shinkeigaku. 2010; 50(6):412-4. DOI: 10.5692/clinicalneurol.50.412. View

13.

Bedard M, Molloy D, SQUIRE L, Dubois S, Lever J, ODonnell M . The Zarit Burden Interview: a new short version and screening version. Gerontologist. 2001; 41(5):652-7. DOI: 10.1093/geront/41.5.652. View

14.

Henry J, Crawford J . The short-form version of the Depression Anxiety Stress Scales (DASS-21): construct validity and normative data in a large non-clinical sample. Br J Clin Psychol. 2005; 44(Pt 2):227-39. DOI: 10.1348/014466505X29657. View

15.

Vignola A, Guzzo A, Calvo A, Moglia C, Pessia A, Cavallo E . Anxiety undermines quality of life in ALS patients and caregivers. Eur J Neurol. 2008; 15(11):1231-6. DOI: 10.1111/j.1468-1331.2008.02303.x. View

16.

Ringholz G, Appel S, Bradshaw M, Cooke N, Mosnik D, Schulz P . Prevalence and patterns of cognitive impairment in sporadic ALS. Neurology. 2005; 65(4):586-90. DOI: 10.1212/01.wnl.0000172911.39167.b6. View

17.

Cedarbaum J, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B . The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III). J Neurol Sci. 1999; 169(1-2):13-21. DOI: 10.1016/s0022-510x(99)00210-5. View

18.

Witgert M, Salamone A, Strutt A, Jawaid A, Massman P, Bradshaw M . Frontal-lobe mediated behavioral dysfunction in amyotrophic lateral sclerosis. Eur J Neurol. 2009; 17(1):103-10. DOI: 10.1111/j.1468-1331.2009.02801.x. View

19.

Montes J, Levy G, Albert S, Kaufmann P, Buchsbaum R, Gordon P . Development and evaluation of a self-administered version of the ALSFRS-R. Neurology. 2006; 67(7):1294-6. DOI: 10.1212/01.wnl.0000238505.22066.fc. View

20.

Zarit S, Reever K . Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980; 20(6):649-55. DOI: 10.1093/geront/20.6.649. View