802
Views
29
CrossRef citations to date
0
Altmetric
ORIGINAL ARTICLE

Impact of disease, cognitive and behavioural factors on caregiver outcome in amyotrophic lateral sclerosis

, , , , , , , , & show all
Pages 316-323 | Received 15 Jan 2015, Accepted 12 Apr 2015, Published online: 22 Jul 2015

References

  • Merrilees J, Klapper J, Murphy J, Lomen–Hoerth C, Miller BL. Cognitive and behavioural challenges in caring for patients with frontotemporal dementia and amyotrophic lateral sclerosis. Amyotroph Lateral Scler. 2010;11:298–302.
  • Grossman AB, Woolley-Levine S, Bradley WG, Miller RG. Detecting neurobehavioural changes in amyotrophic lateral sclerosis. Amyotroph Lateral Scler. 2007;8:56–61.
  • Gibbons Z, Richardson A, Neary D, Snowden JS. Behaviour in amyotrophic lateral sclerosis. Amyotroph Lateral Scler. 2008;9:67–74.
  • Witgert M, Salamone AR, Strutt AM, Jawaid A, Massman PJ, Bradshaw M, et al. Frontal-lobe mediated behavioural dysfunction in amyotrophic lateral sclerosis. Euro J Neurol. 2010;17:103–10.
  • Goldstein LH, Abrahams S. Changes in cognition and behaviour in amyotrophic lateral sclerosis: nature of impairment and implications for assessment. Lancet Neurol. 2013;12:368–80.
  • Girardi A, MacPherson SE, Abrahams S. Deficits in emotional and social cognition in amyotrophic lateral sclerosis. Neuropsychology. 2011;25:53–65.
  • Lillo P, Savage S, Mioshi E, Kiernan MC, Hodges JR. Amyotrophic lateral sclerosis and frontotemporal dementia: a behavioural and cognitive continuum. Amyotroph Lateral Scler. 2012;13:102–9.
  • Gibbons Z, Snowden JS, Thompson JC, Happé F, Richardson A, Neary D. Inferring thought and action in motor neuron disease. Neuropsychologia. 2007;45:1196–1207.
  • Staios M, Fisher F, Lindell AK, Ong B, Howe J, Reardon K. Exploring sarcasm detection in amyotrophic lateral sclerosis using ecologically valid measures. Front Hum Neurosci. 2013;7:178.
  • Adelman EE, Albert SM, Rabkin JG, Del Bene ML, Tider T, O’Sullivan I. Disparities in perceptions of distress and burden in ALS patients and family caregivers. Neurology. 2004;62:1766–70.
  • Gauthier A, Vignola A, Calvo A, Cavallo E, Moglia C, Sellitti L, et al. A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology. 2007;68: 923–6.
  • Goldstein LH, Adamson M, Jeffrey L, Down K, Barby T, Wilson C, et al. The psychological impact of MND on patients and carers. J Neurol Sci. 1998;160:S114–121.
  • Goldstein LH, Atkins L, Landau S, Brown R, Leigh PN. Predictors of psychological distress in carers of people with amyotrophic lateral sclerosis: a longitudinal study. Psychol Med. 2006;36:865–75.
  • Chio A, Vignola A, Mastro E, Guidici AD, Iazzolino B, Calvo A, et al. Neurobehavioural symptoms in ALS are negatively related to caregivers’ burden and quality of life. Euro J Neurol. 2010;17:1298–1303.
  • Lillo P, Mioshi E, Hodges JR. Caregiver burden in amyotrophic lateral sclerosis is more dependent on patients’ behavioural changes than physical disability: a comparative study. BMC Neurol. 2012;12:156.
  • Johns MW. A new method for measuring daytime sleepiness: the Epworth sleepiness scale. Sleep. 1991; 14:540–5.
  • Zigmond AS, Snaith RP. The Hospital Anxiety and Depression Scale. ActaPsychiatr Scand. 1983;67:361–70.
  • Zarit SH, Zarit JM. Instructions for the Burden Interview. Pennsylvania: Pennsylvania State University, 1987.
  • Morris LW, Morris RG, Britton PG. The relationship between marital intimacy, perceived strain and depression in spouse caregivers of dementia sufferers. Br J Med Psychol. 1988;61:231–6.
  • Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, et al. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. J Neurol Sci. 1999;169:13–21.
  • Gibbons C, Mills R, Thornton E, Ealing J, Mitchell JD, Shaw PJ, et al. Rasch analysis of the hospital anxiety and depression scale (HADS) for use in motor neuron disease. Health Qual Life Outcomes. 2011;9:1–8.
  • Abrahams S, Leigh PN, Harvey A, Vythelingum GN, Grise D, Goldstein LH. Verbal fluency and executive dysfunction in amyotrophic lateral sclerosis (ALS). Neuropsychologia. 2000;38:734–47.
  • Delis D, Kaplan E, Krammer J. Delis-Kaplan Executive Function System. San Anotonio, USA: Psychological Corporation, 2001.
  • Burgess PW, Shallice T. The Hayling and Brixton Tests. Bury St Edmonds, UK: Thames Valley Company, 1997.
  • McDonald S, Flanagan S, Rollins JB. The Awareness of Social Inference Test (TASIT). St Edmonds, UK: Thames Valley Test Company, 2002.
  • Happé F, Brownell H, Winner E. Acquired `theory of mind’ impairments following stroke. Cognition. 1999; 70:211–24.
  • Baron-Cohen S, Wheelwright S, Hill J, Raste Y, Plumb I. The “Reading the Mind in the Eyes” Test Revised Version: A Study with Normal Adults, and Adults with Asperger Syndrome or High-functioning Autism. J Child Psychol Psychiatry. 2001;42:241–51.
  • Grace J, Malloy P. The Frontal Systems Behavioural Scale (FrSBe). Florida:Psychological Assessment Resources Inc, 2001.
  • Newsom-Davis IC, Abrahams S, Goldstein LH, Leigh PN. The emotional lability questionnaire: a new measure of emotional lability in amyotrophic lateral sclerosis. J Neurol Sci. 1999;169:22–5.
  • Strong MJ, Grace GM, Freedman M, Lomen-Hoerth C, Woolley SC, Goldstein LH, et al. Consensus criteria for the diagnosis of frontotemporal cognitive and behavioural syndromes in amyotrophic lateral sclerosis. Amyotroph Lateral Scler. 2009;10:131–46.
  • Miller LA, Mioshi E, Savage S, Lah S, Hodges JR, Piguet O. Identifying cognitive and demographic variables that contribute to carer burden in dementia. Dement Geriatr Cogn Disord 2013;36:43–9.
  • Dean K, Wilcock G. Living with mild cognitive impairment: the patient’s and carer’s experience. Int Psychogeriatr. 2012;24:871–81.
  • Hecht MJ, Graesel E, Tigges S, Hillemacher T, Winterholler M, Hilz MJ, et al. Burden of care in amyotrophic lateral sclerosis. Palliat Med. 2003;17:327–33.
  • Atkins L, Brown RG, Leigh PN, Goldstein LH. Marital relationships in amyotrophic lateral sclerosis. Amyotroph Lateral Scler. 2010;11:344–50.
  • Brown J. User, carer and professional experiences of care in motor neuron disease. Primary Health Care Research and Development. 2003;4:207–18.
  • Oyebode J, Smith H, Morrison K. The personal experience of partners of individuals with motor neuron disease. Amyotroph Lateral Scler Frontotemporal Degener. 2013; 14: 39–43.
  • Abrahams S. Social cognition in amyotrophic lateral sclerosis. Neurodegener Dis Manag. 2011;1:397–405.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.