Date: Monday, June 5, 2017
Session Title: Quality Of Life/Caregiver Burden in Movement Disorders
Session Time: 1:45pm-3:15pm
Location: Exhibit Hall C
Objective: Evaluate the demographic profile, psychosocial aspects and knowledge about the disease in caregivers of patients with PD attended by a reference center in Rio de Janeiro. Propose interdisciplinary activities that address the quality of life of caregivers.Evaluate the demographic profile, psychosocial aspects and knowledge about the disease in caregivers of patients with PD attended by a reference center in Rio de Janeiro.
Background: The caregiver of patients with Parkinson’s disease (PD) may present difficulties with motor manifestations and with the clinical course of the disease. Caring for a patient with a neurological disease can have a direct impact on their daily lives. Therefore, understanding how these factors impact their lives is important in proposing treatments and intervention strategies in this group.
Methods: Evaluation performed through a questionnaire after the medical consultation in the period from July to December 2016. Individualized interview conducted by the psychology team, using The Informal caregiver burden assessment questionnaire,validated for Brazil.
Results: 105 caregivers were interviewed. 82% were women; 89.4% were relatives of the patient: 43.6 were children and 29.7% spouses. Mean age was 51.85 years (ranging from 16 to 83). Schooling: 67.2% studied over 10 years, average of 8.3 years of study. Financial income: 33.3% receive up to U$ 1.200,00/month and 29.2% do not have income. About the disease: tremor and muscle stiffness were considered the most important and disabling symptoms by 54.2% of the respondents, bradykinesia was reported by 42%. In free answers, 46% said they had knowledge to care for the patient. 84% say they seek information about the disease: 63% use the internet, 32% TV programs, and 51% consult their doctor with questions. Psychosocial aspects: 49% considered psychologically shaken by caring for a parkinsonian, 51.2% changed their life plan after this activity, however, 89% said they feel better about caring for a parkinsonian.
Conclusions: In our sample, we observed a predominance of family members as caregivers and a large proportion (29%) with no financial remuneration. Although 46% claim to be able to be a caregiver, almost half confirm that they are psychologically affected by it. New strategies for treatment and psychotherapeutic support should be included in medical care centers to improve caregivers’ quality of life.
References: 1. Martínez-Martín P, Forjaz MJ, Frades-Payo B, Rusiñol AB, Fernández-García JM, Benito-León J, et al. Caregiver burden in Parkinson´s disease. Mov Disord. 2007;22(7):924-31.
2. Monteiro EA, Mazin SC, Spadoti Dantas RA. The informal caregiver burden assessment questionnaire validation for Brazil. Rev Bras Enferm. 2009; 68(3): 364-70.
To cite this abstract in AMA style:V. Carvalho Neri, C. Teixeira Muratori, P. Portes Ferreira, P. Sandin, G. Licassali, S. Barbosa Gomes, E. Reynaldo. Psychosocial evaluation in caregivers of patients with Parkinson’s disease: analysis of a cohort of Rio de Janeiro / Brazil [abstract]. Mov Disord. 2017; 32 (suppl 2). https://www.mdsabstracts.org/abstract/psychosocial-evaluation-in-caregivers-of-patients-with-parkinsons-disease-analysis-of-a-cohort-of-rio-de-janeiro-brazil/. Accessed December 5, 2023.
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