Needs of caregivers of people with dementia in the context of long-term institutionalization: Scoping review
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Abstract
Background: Taking the decision to institutionalize the person with dementia is a situation that triggers stress in caregivers, with reports of feelings of loss of control, loneliness, isolation, blame and shame for not being able to maintain the role of caregivers. It is essential to know what are the needs felt by the caregivers of the person with dementia in the context of long-term institutionalization, so that a person-centered intervention can be carried out, encompassing the family members as part of the care. Objective: To identify the needs of caregivers of people with dementia in the context of long-term institutionalization. Methodology: Scoping review developed under the guidelines of the Joanna Briggs Institute, using the databases MEDLINE, CINAHL and ScienceDirect, with the time frame from 2009 to 2018. Results: Six articles were selected that involved caregivers of people with dementia in the context of longterm institutionalization. It was found that there are different needs in the pre and post-institutionalization phases.
Pre-institutionalization relates to the decision-making process of institutionalizing the person, which includes the needs to know the institution in advance and the existence of a network that supports the decision. Post-institutionalization refers to the needs that arise from the moment the person is admitted to the institution of long-term care, namely the reception, support during visits, the establishment of a partnership with health professionals, monitoring quality of care and financial issues. Conclusion: The institutionalization of the person with dementia triggers in the caregivers new focuses of needs that should be the target of intervention by health professionals, in order to facilitate the underlying transition process.
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References
Afram, B., Verbeek, H., Bleijlevens, M. H., & Hamers, J. P. (2015). Needs of informal caregivers during transition from home towards institutional care in dementia: a systematic review of qualitative studies, Int. Psychogeriatric, 27(6), 891–902. DOI: 10.1017/S1041610214002154.
Cronfalk, B., Ternestedt, B., & Norberg, A. (2017). Being a close family member of a person with dementia living in a nursing home, Journal of Clinical Nursing, 26(21-22), 1-10. DOI: 10.1111/jocn.13718.
Gaugler, J. E., Mittelman, M.S., Hepburn, K., & Newcomer, R. (2009). Predictors of change in caregiver burden and depressive symptoms following nursing home admission, Psychol Aging, 24(2), 385–396. DOI:10.1037/a0016052.
Graneheim, U., Johansson, A., & Lindgren, B. (2014). Family caregivers’ experiences of relinquishing the care of a person with dementia to a nursing home: insights from a meta-ethnographic study, Scandinavian Journal of Caring Sciences, 28, 215–224. DOI: 10.1111/scs.12046.
Hainstock, T., Cloutier, D., & Penning, M. (2017). From home to ‘home’: Mapping the caregiver journey in the transition from home care into residential care, Journal of Aging Studies, 43, 32–39. DOI: 10.1016/j.jaging.2017.09.003.
Hoffmann F., & Rodrigues, R. (2010). Informal carers: who takes care of them? European Centre for Social Welfare Policy and Research, Viena. Disponível em: http://www.euro.centre.org/detail.php?xml_id=1714
Joanna BriggsInstitute(2015). Joanna BriggsInstitute Reviewers’ Manual: 2015 edition / Supplement. TheJoana Briggs Institute. The Joanna Briggs Institute. Disponível em: https://nursing.lsuhsc.edu/JBI/docs/ReviewersManuals/Scoping-.pdf
Johansson, A., Ruzin, H. O., Graneheim, U. H., & Lindgren, B. (2014). Remaining connected despite separation – former family caregivers’ experiences of aspects that facilitate and hinder the process of relinquishing the care of a person with dementia to a nursing home, Aging & Mental Health, 18(8), 1029–1036. DOI:10.1080/13607863.2014.908456.
Joling, K. J., van Marwijk, H. W., Veldhuijzen, A. E., van der Horst, H. E., Scheltens, P., Smit, F., & van Hout, H. P. (2015). The two-year incidence of depression and anxiety disorders in spousal caregivers of persons with dementia: who is at the greatest risk? Am J Geriatr Psychiatry, 23(3), 293–303. DOI: 10.1016/j.jagp.2014.05.005.
Law, K., Patterson, T., & Muers, J. (2016). Staff Factors Contributing to Family Satisfaction with Long-Term Dementia Care: A Systematic Review of the Literature, Clinical Gerontologist, 40(5), 326-351. DOI: 10.1080/07317115.2016.1260082.
Meleis, A. (2010). Transitions Theory: Middle Range and Situation Specific Theories in Nursing Research and Practice. New York: Springer Publishing Company.
Muller, C., Lautenschläger, S., Meyer, G., & Stephan, A. (2017). Interventions to support people with dementia and their caregivers during the transition from home care to nursing home care: A systematic review, International Journal of Nursing Studies, 71, 139–152. DOI: 10.1016/j.ijnurstu.2017.03.013.
Organização para Cooperação e Desenvolvimento Económico. (2017). Health at a Glance 2017. Paris: OECD Publishing. Disponível em: https://ec.europa.eu/health/sites/health/ files /state/docs/2018_healthatglance_rep_en.pdf
Pereira, H. J. A. R., (2011). Subitamente cuidadores informais! A experiência de transição para o papel de cuidador informal a partir de um evento inesperado. (Tese de doutoramento). Universidade de Lisboa, Portugal. Disponível no RCAAP http://repositorio.ul.pt/bitstream/10451/3916/1/ulsd61020_td_Helder_Pereira.pdf
Pinquart, M., & Sörensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis, Psychol Aging, 18(2), 250–267. DOI: 10.1037/0882-7974.18.2.250.
Prince, M., Wimo, A., Guerchet, M., Ali, G. C., Wu, Y.T., & Prina, M. (2015). The Global Impact of Dementia: An Analysis of Prevalence, Incidence, Cost and Trends - World Alzheimer Report 2015. Londres: Alzheimer’s Disease International. Disponível em: https://www.alz.co.uk/research/WorldAlzheimerReport2015.pdf
Santana, I., Farinha, F., Freitas, S., Rodrigues, V., & Carvalho, A. (2015). Epidemiologia da Demência e da Doença de Alzheimer em Portugal: Estimativas da Prevalência e dos Encargos Financeiros com a Medicação, Acta Médica Portuguesa, 28(2), 182-188.
Sury, L., Burns, K., & Brodaty, H. (2013). Moving in: adjustment of people living with dementia going into a nursing home and their families, International Psychogeriatrics, 25, 867–876. DOI: 10.1017/S1041610213000057.
Thompson, G. N., & Roger, K. (2014). Understanding the needs of family caregivers of older adults dying with dementia, Palliative & Supportive Care, 12, 223–231. DOI: 10.1017/S1478951513000461.