Volume 4, Issue 3, June 2015, Page: 125-131
Anticipatory Grief Among Close Relatives of Patients with ALS and MS
Agneta Grimby, Department of Medicine, Sahlgrenska Academy, Gothenburg University, Gothenburg, Sweden
Åsa K. Johansson, Department of Medicine, Sahlgrenska Academy, Gothenburg University, Gothenburg, Sweden
Ulf Johansson, Department of Medicine, Sahlgrenska Academy, Gothenburg University, Gothenburg, Sweden
Received: Apr. 6, 2015;       Accepted: Apr. 26, 2015;       Published: May 16, 2015
DOI: 10.11648/j.pbs.20150403.16      View  4822      Downloads  154
A postal survey was sent to close relatives of Swedish patients with ALS and progressive MS to assess preparatory grief according to the Anticipatory Grief Scale (AGS), together with age, relationship, duration of the illnesses, perceived quality of care, present need of care, caregiver burden, and need of support. The relatives in the two illness groups generally responded in similar ways on the AGS, e.g. reporting closeness, preoccupation, tearfulness, and feelings of injustice regarding the illness. More MS relatives agreed on being irritable and wondering about life without the disease; they reported increased competence, but less ability to move ahead with life. The relatives’ need to talk to somebody outside the family and the hospital staff was more frequently reported by the MS relatives than by the ALS relatives. Overall, the need to talk correlated to feelings of loneliness, longing, tearfulness, loss of interest in daily activities, worries for the future, irritability and sleeping problems. However, surprisingly many of the ALS and MS relatives reported planning for the future and had discovered new personal resources after the diagnose, possibly indicating an overweight of responders adjusted to the situation and therefore expressing less sorrow.
Anticipatory Grief, ALS, MS, Close Relatives, Need of Care, Caregiver Burden, Support
To cite this article
Agneta Grimby, Åsa K. Johansson, Ulf Johansson, Anticipatory Grief Among Close Relatives of Patients with ALS and MS, Psychology and Behavioral Sciences. Vol. 4, No. 3, 2015, pp. 125-131. doi: 10.11648/j.pbs.20150403.16
Alshubaili AF, Awadalla AW, Ohaeri JU, Mabrouk AA. Relationship of depression, disability, and family caregiver attitudes to the quality of life of Kuwaiti persons with multiple sclerosis: a controlled study. BMC Neurol 2007; 18: 7-31.
Berg J, Lindgren P, Fredrikson S, Kobelt G. Costs and quality of life of multiple sclerosis in Sweden. Eur J Health Econ 2006; 7 Suppl 2: 75-85.
Bolmsjö I, Hermerén G. Interviews with patients, family, and caregivers in amyotrophic lateral sclerosis: comparing needs. J Palliat Care 2001; 17: 236-240.
Brandes DW, Shaya FT, Pill MW. Quantifying the Role of Natalizumab in Health and Economic Outcomes in Multiple Sclerosis. Am J Manag Care 2010; 16: 171-177.
Buhse M. Assessment of caregiver burden in families of persons with multiple sclerosis. J Neurosci Nurs 2008; 40: 25-31.
Campbell JD, Ghushchyan V, McQueen RB, et al. Burden of multiple sclerosis on direct, indirect costs and quality of life: national US estimates. Mult Scler Relat Disord 2014; 3: 227-236.
Chen D, Guo X, Zheng Z, Wei Q, Song W, Cao B, Huang R, Yang R, Shang H. Depression and anxiety in amyotrophic lateral sclerosis: Correlations between the distress of patients and caregivers. Muscle Nerve 2015; 51:353-357.
Chio A, Vignola A, Mastro E, Giudici AD, Iazzolino B, Calvo A, Moglia C, Montuschi A. Neurobehavioral symptoms in ALS are negatively related to caregivers’ burden and quality of life. Eur J Neurol 2010; 17: 1298–1303.
Confavreux C, Vukusic S. Age at disability milestones in multiple sclerosis. Brain 2006; 129: 595-605.
Czaplinski A, Yen AA, Appel SH. Amyotrophic lateral sclerosis: early predictors of prolonged survival. J Neurol 2006; 253: 1428–1436.
Ertekin Ö, Özakbaz S, Idiman E. Caregiver burden, quality of life and walking ability in different disability levels of multiple sclerosis. NeuroRehabilitation 2014; 34: 313-321.
Figved N, Myhr KM, Larsen JP, Aarsland D. Caregiver burden in multiple sclerosis: the impact of neuropsychiatric symptoms. J Neurol Neurosurg Psychiatry 2007; 78: 1097–1102.
Fowler NR, Hansen A, Garand L. Association between anticipatory grief and social problem solving among caregivers. J Aging Health 2013; 25: 493-509.
Gauthier A, Vignola A, Calvo A, Cavallo E, Moglia C, Sellitti L, Mutani R, Chiò A. A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology 2007; 68:923-926.
Gottberg K, Chruzander C, Einarsson U, et al. Health-related quality of life in partners of persons with MS: a longitudinal 10-year perspective. BMJ Open 2014; 4:e006097.
Hainsworth MA. Helping spouses with chronic sorrow related to multiple sclerosis. J Gerontol Nurs 1995; 21: 29-33.
Hecht MJ, Graesel E, Tigges S, Hillemacher T, Winterholler M, Hilz MJ, Heuss D, Neundörfer B. Burden of care in amyotrophic lateral sclerosis. Palliat Med 2003 Jun; 17: 327-333.
Holley CK, Mast BT. The impact of anticipatory grief on caregiver burden in dementia caregivers. Gerontologist 2009; 49: 388-396.
Isaksson AK, Ahlström G. Managing chronic sorrow: experiences of patients with multiple sclerosis. J Neurosci Nurs 2008; 40: 180-191.
Johansson ÅK, Grimby A. Anticipatory Grief Among Close Relatives of Patients at Hospice and Palliative Wards. Am J Hosp Pall Med 2012; 29: 134-138.
Johansson ÅK, Sundh V, Wijk H, Grimby A. Anticipatory grief among close relatives of persons with dementia in comparison with close relatives of patients with cancer. Am J Hosp Palliat Care 2013; 30: 29-34.
Johansson UE, Grimby A. Anticipatory Grief among Close Relatives of Patients with Parkinson’s Disease. Psychol Behav Sci 2014; 3: 179-184.
Jongen PJ, Ruimschotel R, Heerings M, Hussaarts A, Duyverman L, van der Zande A, Valkenburg-Vissers J, Wolper H, van Droffelaar M, Lemmens W, Donders R, Visser LH. Improved self-efficacy in persons with relapsing remitting multiple sclerosis after an intensive social cognitive wellness program with participation of support partners: a 6-months observational study. Health Qual Life Outcomes 2014; 19: 12-40.
Kingwell E, Marriott JJ, Jetté N. Incidence and prevalence of multiple sclerosis in Europe: a systematic review. BMC Neurology 2013; 13: article 128.
Koch M, Kingwell E, Rieckmann P, Tremlett H. The natural history of primary progressive multiple sclerosis. Neurology 2009; 73: 1996-2002.
Labiano-Fontcuberta A, Mitchell AJ, Moreno-García S, Benito-León J. Anxiety and depressive symptoms in caregivers of multiple sclerosis patients: The role of information processing speed impairment. J Neurol Sci 2015; 349: 220-225.
Labiano-Fontcuberta A, Mitchell AJ, Moreno-García S, Benito-León J. Cognitive impairment in patients with multiple sclerosis predicts worse caregiver's health-related quality of life. Mult Scler 2014; 20:1769-1779.
Liu NC, Lai EYL. Find a way out: bereavement support in Taiwan hospice. Support Care Cancer 2006; 14: 4-10.
Liao S, Arnold RM. Attitudinal Differences in Neurodegenerative Disorders. J Pall Med 2007; 10: 430-432.
Liedström E, Isaksson AK, Ahlström G. Chronic sorrow in next of kin of patients with multiple sclerosis. J Neurosci Nurs 2008; 40: 304-311.
Lillo P, Mioshi E, Hodges JR. Caregiver burden in amyotrophic lateral sclerosis is more dependent on patients' behavioral changes than physical disability: a comparative study. BMC Neurol 2012; 12: 156.
Maroney M, Hunter SF. Implications for Multiple Sclerosis in the Era of the Affordable Care Act: A Clinical Overview. Am J Manag Care 2014; 20: 220-227.
Marwit SJ, Meuser TM. Development and initial validation of an inventory to assess grief in caregivers of persons with Alzheimer's disease. Gerontologist 2002; 42: 751-765.
Marwit SJ, Meuser TM. Development of a short form inventory to assess grief in caregivers of dementia patients. Death Stud 2005; 29: 191-205.
McKay KA, Kwan V, Duggan T, Tremlett H. Risk Factors Associated with the Onset of Relapsing-Remitting and Primary Progressive Multiple Sclerosis: A Systematic Review. BioMed Res Internat 2015; Article ID 817238.
Millul A, Beghi E, Logroscino G, Micheli A, Vitelli E, Zardi A: Survival of patients with amyotrophic lateral sclerosis in a population-based registry. Neuroepidemiol 2005; 25: 114–119.
Montel S, Albertini L, Desnuelle C, Spitz E. Evolution of quality of life, mental health, and coping strategies in amyotrophic lateral sclerosis: a pilot study. J Palliat Med 2012; 15:1181-1184.
O'Doherty LJ, Hickey A, Hardiman O. Measuring life quality, physical function and psychological well-being in neurological illness. Amyotroph Lateral Scler 2010; 11: 461-468.
Olsson Ozanne AG, Strang S, Persson L. Quality of life, anxiety and depression in ALS patients and their next of kin. J Clin Nurs 2011; 20: 283-291.
Pagnini F, Rossi G, Lunetta C, Banfi P, Castelnuovo G, Corbo M, Molinari E. Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis. Psychol Health Med 2010; 15: 685–693.
Pagnini F. Psychological wellbeing and quality of life in amyotrophic lateral sclerosis: a review. Int J Psychol 2013; 48: 194-205.
Pike J, Jones E, Rajagopalan K, Piercy J, Anderson P. Social and economic burden of walking and mobility problems in multiple sclerosis. BMC Neurol 2012; 12: 94.
Rabkin, J G, Albert SM, Rowland LP, Mitsumoto H. How common is depression among ALS caregivers? Amyotroph Lateral Scler 2009; 10: 448-455.
Rivera-Navarro J1, Benito-León J, Oreja-Guevara C, Pardo J, Dib WB, Orts E, Belló M. Caregiver Quality of Life in Multiple Sclerosis (CAREQOL-MS) Study Group. Burden and health-related quality of life of Spanish caregivers of persons with multiple sclerosis. Mult Scler 2009; 15: 1347-1355.
Roach AR, Averill AJ, Segerstrom SC, Kasarskis EJ. The dynamics of quality of life in ALS patients and caregivers. Ann Behav Med 2009; 37: 197-206.
Rotstein Z, Hazan R, Barak Y, Achiron A. Perspectives in multiple sclerosis health care: special focus on the costs of multiple sclerosis. Autoimmun Rev 2006; 5: 511-516.
Stellmann JP, Neuhaus A, Lederer C, Daumer M, Heesen C. Validating Predictors of Disease Progression in a Large Cohort of Primary-Progressive Multiple Sclerosis Based on a Systematic Literature Review. PloS One 2014; 9:e92761.
Theut SK, Jordan L, Ross LA, Deutsch SI. Caregiver’s anticipatory grief in dementia: a pilot study. Int J Aging Hum Develop 1991; 33: 113-118.
Trail M, Nelson N, Van JN, Appel SH, Lai EC. Major stressors facing patients with amyotrophic lateral sclerosis (ALS): a survey to identify their concerns and to compare with those of their caregivers. Amyotroph Lateral Scler Other Motor Neuron Disord 2004; 5: 40-45.
Tramonti F, Barsanti I, Bongioanni P, Bogliolo C3, Rossi B. A permanent emergency: a longitudinal study on families coping with amyotrophic lateral sclerosis. Fam Syst Health 2014; 32: 271-279.
Vignola A, Guzzo A, Calvo A, Moglia C, Pessia A, Cavallo E, Cammarosano S, Giacone S, Ghiglione P, Chiò A. Anxiety undermines quality of life in ALS patients and caregivers. Eur J Neurol 2008; 15: 1231-1236.
Wolf J, Safer A, Wöhrle JC, Palm F, Nix WA, Maschke M, Grau AJ. Factors predicting one-year mortality in amyotrophic lateral sclerosis patients – data from a population-based registry. BMC Neurol 2014; 14: 197.
Öhman M, Söderberg S. The experiences of close relatives living with a person with serious chronic illnes. Qual Health Res 2003; 14: 396-401.
Browse journals by subject