Psychology and Behavioral Sciences
Volume 3, Issue 5, October 2014, Pages: 179-184
Received: Sep. 26, 2014;
Accepted: Oct. 11, 2014;
Published: Nov. 10, 2014
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Ulf Erland Johansson, Department of Medicine, Sahlgrenska Academy, Gothenburg University, Gothenburg, Sweden
Agneta Grimby, Department of Geriatrics, Sahlgrenska Hospital, Gothenburg, Gothenburg, Sweden
Several illnesses cause suffering and pre-death grief among close relatives, as in cancer and dementia. This might be the case also at Parkinson’s Disease (PD). We aimed at getting grief self-reports of relatives of PD patients using the same instrument (AGS) as in former grief studies to see similarities and differences. Anticipatory Grief Scale (AGS) and questions about background variables were sent to PD caregiver support groups in Sweden to be handed out to the members at their meetings. Close relatives of persons with Parkinson’s disease (PD) reported feelings and reactions on the AGS, and the results were compared with those from relatives of dementia patients in a former study also using the AGS. Self-estimations about the duration of illness, the condition at the time for questioning, and the perceived quality of care of the relative with PD were also made. The study showed an overall stressful situation including feelings of missing and longing, inability to accept the terminal fact, preoccupation with the ill, tearfulness, sleeping problems, anger, loneliness, and a need to talk. The PD and dementia groups appeared to show much more anticipatory grief similarities than dissimilarities. The duration of the disease did not influence the grief reactions, which, however, was shown for perceived quality of care as regards irritability and preoccupation thinking of the ill relative. Also the respondents’ perception of a bad condition of their relatives showed increased reports on loneliness, a need to talk about the illness, personal dysfunction, and not planning ahead.
Ulf Erland Johansson,
Anticipatory Grief among Close Relatives of Patients with Parkinson’s Disease, Psychology and Behavioral Sciences.
Vol. 3, No. 5,
2014, pp. 179-184.
McLaughlin D, Hasson F, Kernohan WG, Waldron M, McLaughlin M, Cochrane B, Chambers H. Living and coping with Parkinson's disease: perceptions of informal carers. Pall Med 2011;25(2):177-182.
Andrén S, Elmståhl S. The relationship between caregiver burden, caregivers' perceived health and their sense of coherence in caring for elders with dementia. J Clin Nurs 2008;17(6):790-799.
Jenkinson C, Dummett S, Kelly L, Peters M, Dawson J, Morley D, Fitzpatrick R. The development and validation of a quality of life measure for the carers of people with with Parkinson's disease (the PDQ-Carer). Parkinsonism Relat Disord 2012 Jun;18(5):483-487.
Leroi I, McDonald K, Pantula H, Harbishettar V. Cognitive impairment in Parkinson disease: impact on quality of life, disability, and caregiver burden. J Geriatr Psychiatry Neurol 2012;25(4):208-214.
Roland KP, Jenkins ME, Johnson AM. An exploration of the burden experienced by spousal caregivers of individuals with Parkinson's disease. Mov Disord 2010;25(2):189-193.
Schrag A, Hovris A, Morley D, Quinn N, Jahanshahi M. Caregiver-burden in Parkinson's disease is closely associated with psychiatric symptoms, falls, and disability. Parkinsonism Relat Disord 2006;12(1):35-41.
D'Amelio M, Terruso V, Palmeri B, Di Benedetto N, Famoso G, Cottone P, Aridon P, Ragonese P, Savettieri G. Predictors of caregiver burden in partners of patients with Parkinson's disease. Neurol Sci 2009;30(2):171-174.
Carter JH, Lyons KS, Lindauer A, Malcom J. Pre-death grief in Parkinson's caregivers: a pilot survey-based study. Parkinsonism Relat Disord. 2012;18 Suppl 3:S15-18.
McRae C, Fazio E, Hartsock G, Kelley L, Urbanski S, Russell D. Predictors of loneliness in caregivers of persons with Parkinson's disease. Parkinsonism Relat Disord 2009;15(8):554-557.
Pal PK, Thennarasu K, Fleming J, Schulzer M, Brown T, Calne SM. Nocturnal sleep disturbances and daytime dysfunction in patients with Parkinson's disease and in their caregivers. Parkinsonism Relat Disord 2004;10(3):157-168.
Lökk J. Caregiver strain in Parkinson's disease and the impact of disease duration. Eur J Phys Rehabil Med 2008;44(1):39-45.
Tan SB, Williams AF, Morris ME. Experiences of caregivers of people with Parkinson's disease in Singapore: a qualitative analysis. J Clin Nurs 2012;21:2235-2246.
Marwit SJ, Chibnall JT, Dougherty R, Jenkins C, Shawgo J. Assessing pre-death grief in cancer caregivers using the Marwit-Meuser Caregiver Grief Inventory (MM-CGI). Psychooncology 2008;17:300-303.
Carter JH, Lyons KS, Stewart BJ, Archbold PG, Scobee R. Does age make a difference in caregiver strain? Comparison of young versus older caregivers in early-stage Parkinson's disease. Mov Disord 2010;25:724-730.
Coombs MA. The mourning before: can anticipatory grief theory inform family care in adult intensive care? Int J Pall Nurs 2010;16:580-584.
Holtslander LF, McMillan SC. Depressive symptoms, grief, and complicated grief among family caregivers of patients with advanced cancer three months into bereavement. Oncol Nurs Forum 2011;38:60-65.
Thommessen B, Aarsland D, Braekhus A, Oksengaard AR, Engedal K, Laake K. The psychosocial burden on spouses of the elderly with stroke, dementia and Parkinson's disease. Int J Geriatr Psychiatry 2002;17(1):78-84.
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 Pall Med 2013;30:29-34.
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.
Liu NC, Lai EYL. Find a way out: bereavement support in Taiwan hospice. Support Care Cancer 2006;14:4-10.
Shin H, Lee JY, Youn J, Kim JS, Cho JW. Factors contributing to spousal and offspring caregiver burden in Parkinson's disease. Eur Neurol 2012;67:292-296.
Ozdilek B, Gunal DI. Motor and non-motor symptoms in Turkish patients with Parkinson's disease affecting family caregiver burden and quality of life. J Neuropsychiatry Clin Neurosci 2012;24(4):478-483.
Martínez-Martín P, Arroyo S, Rojo-Abuin JM, Rodriguez-Blazquez C, Frades B, de Pedro Cuesta J. Burden, perceived health status, and mood among caregivers of Parkinson's disease patients. Mov Disord 2008;23:1673-1680.
A'Campo LE, Wekking EM, Spliethoff-Kamminga NG, Le Cessie S, Roos RA. The benefits of a standardized patient education program for patients with Parkinson's disease and their caregivers. Parkinsonism Relat Disord 2010;16(2):89-95.
Morley D, Dummett S, Peters M, Kelly L, Hewitson P, Dawson J, Fitzpatrick R, Jenkinson C. Factors influencing quality of life in caregivers of people with Parkinson's disease and implications for clinical guidelines. Parkinsons Dis 2012;2012:190901. doi: 10.1155/2012/190901. Epub 2012 Dec 20.
Razali R, Ahmad F, Rahman FN, Midin M, Sidi H. Burden of care among caregivers of patients with Parkinson disease: a cross-sectional study. Clin Neurol Neurosurg 2011;113(8):639-643.