Profiling centenarians’ informal carers: An exploratory study in the Beira Interior region (Portugal)

Rosa Marina Afonso, Tatiana Tomáz, Daniela Brandão, Óscar Ribeiro

Abstract


The number of centenarians is unprecedented and their informal caregivers are in general direct relatives who present an advanced age themselves. This study aims to explore the relationship between caregivers’ wellbeing (health quality of life, burden and satisfaction) and the full length of the care provided, the caregivers’ gender, and the centenarians’ characteristics. Fifty caregiving dyads participated in this study: 12 men and 38 women with a 68.75-year-old median age (SD=8.64) who were main carers and 50 centenarians aged between 100 and 106 years old (M=101.08; DP=1.43). The PT100 – Oporto Centenarian Study data collection protocol was used. Most caregivers were the centenarian’s children (64%), who dedicated, on average, 15 hours a day to their caregiving duties. Women caregivers presented higher burden levels and showed a more positive view about their health status than male caregivers. Caregivers who perceived their income as “insufficient” and those providing care to centenarians showing higher levels of dependency presented greater subjective burden. These results point to the need for health and community responses adapted to the specificities of these care providers who, for the most part, also face their own aging process.

Keywords


Centenarians, Informal caregivers, Burden, Longevity.

References


Acton, G. J. (2002). Health-promoting self-care in family caregivers. Western Journal of Nursing Research, 24, 73-86. doi: 10.1177/01939450222045716

Aires, M., Mocellin, D., Fengler, F. L., Rosset, I., Santos, N. O., Machado, D. O., . . . Paskulin, M. L. G. (2017). Association between filial responsibility when caring for parents and the caregivers overload. Revista Brasileira de Enfermagem, 70, 767-774.

Barbosa, A. L., Oliveira, A. L., & Figueiredo, D. (2012). Rede informal de apoio à pessoa idosa dependente: Motivações e fatores de stress em cuidadores primários e secundários. Revista Kairós: Gerontologia, 15, 11-29.

Barbosa, A., Figueiredo, D., Sousa, L., & Demain, S. (2011). Coping with the caregiving role: Differences between primary and secondary caregivers of dependent elderly people. Aging and Mental Health, 15, 490-499. doi: 10.1080/13607863.2010.543660

Boerner, K., Jopp, D. S., Park, M. S., & Rott, C. (2016). Whom do centenarians rely on for support? Findings from the second Heidelberg centenarian study. Journal of Aging & Social Policy, 28, 165-186. doi: 10.1080/08959420.2016.1160708

Brandão, D., Ribeiro, O., Oliveira, M., & Paúl, C. (2017). Caring for a centenarian parent: An exploratory study on role strains and psychological distress. Scandinavian Journal of Caring Sciences. doi: 10.1111/scs.12423

Brodaty, H., Thomson, C., Thompson, C., & Fine, M. (2005). Why caregivers of people with dementia and memory loss don’t use services. International Journal of Geriatric Psychiatry, 20, 537-546. doi: 10.1002/gps.1322

Cachada, C. (2015). Cuidadores informais de idosos: Avaliação dos antecedentes e consequentes do cuidar. Dissertação de Mestrado em Gerontologia Social, Instituto Politécnico de Viana do Castelo.

Caldas, C. P. (2003). Envelhecimento com dependência: Responsabilidades e demandas da família. Cadernos de Saúde Pública, 19, 773-781.

Cano, V. P., Musitu, Y., & Ruiz, D. M. (2011). Familiares cuidadores de mayores: Una ardua y silenciosa labor. Realidad y perspetivas de futuro. Madrid: Dykinson.

Carretero, S., Garces, J., Rodenas, F., & Sanjose, V. (2009). The informal caregiver’s burden of dependent people: Theory and empirical review. Archives of gerontology and geriatrics, 49, 74-79. doi: 10.1016/j.archger.2008.05.004

Carvalho, M. I. L. (2009). Os cuidados familiares prestados às pessoas idosos em situação de dependência: Características do apoio informal familiar em Portugal. Revista Kairós: Gerontologia, 12, 77-96.

Costa-Font, J., Elvira, D., & Mascarilla-Miró, O. (2009). Ageing in place? Exploring elderly people’s housing preferences in Spain. Urban Studies, 46, 295-316.

DeVellis, R. F. (1991). Scale development: Theory and applications. Newbury Park, CA: Sage Publications.

Doval, M. M., & Berkman, B. J. (2001). The encyclopedia of elder care: The comprehensive resource on geriatric and social care. New York: Springer Publishing Company.

Ekwall, A., Sivberg, B., & Hallberg, I. (2007). Older caregivers’ coping strategies and sense of coherence in relation to quality of life. Journal of Advanced Division of Nursing, 57, 584-596. doi: 10.1111/j.1365-2648.2006.03994.x

Ferreira, P. (2000). Criação da versão portuguesa do SF-36 – Parte I – Adaptação cultural e linguística. Acta Médica Portuguesa, 13, 55-66.

Figueiredo, D. (2007). Cuidados familiares ao idoso dependente. Lisboa: Climepsi Editores.

Freeman, S., Kurosawa, H., Ebihara, S., & Kohzuki, M. (2010). Caregiving burden for the oldest old: A population based study of centenarian caregivers in Northern Japan. Archives of Gerontology and Geriatrics, 50, 282-291. doi: 10.1016/j.archger.2009.04.008

Gonçalves-Pereira, M., Carmo, I., da Silva, J. A., Papoila, A. L., Mateos, R., & Zarit, S. H. (2009). Caregiving experiences and knowledge about dementia in Portuguese clinical outpatient settings. International Psychogeriatrs, 22, 270-280. doi: 10.1017/S1041610209991050

Hogstel, M., Curry, L., & Walker, C. (2005). Caring for older adults: The benefits of informal family caregiving. Journal of Theory Construction & Testing, 9, 55-60.

Instituto Nacional de Estatística (INE). (2012). Censos 2011 – Resultados definitivos. Lisboa: Instituto Nacional de Estatística.

Jani-LeBris, H. (1994). Responsabilidade familiar pelos dependentes idosos nos países das comunidades europeias. Lisboa: Conselho Económico e Social.

Karsch, U. (2007). Idosos dependentes: famílias e cuidadores. Cadernos de Saúde Pública, 19, 861-866.

Kenny, P. M., Hall, J. P., Zapart, S., & Davis, P. R. (2010). Informal care and home-based palliative care: The health-related quality of life cares. Journal of Pain and Symptom Management, 40, 35-48. doi: 10.1016/j.jpainsymman.2009.11.322

Kim, Y., Boerner, K., Jopp, D., Rott, C., & Cimarolli, V. (2015). Social network and care arrangements: Are today’s centenarians better off than previous cohorts? [Abstract]. The Gerontologist, 55, 91. Retrieved from https://doi.org/10.1093/geront/gnv498.06

Kluger, A., & Ferris, S. H. (1991). Scales for the assessment of Alzheimer’s disease. Psychiatric Clinics of North America, 14, 309-326.

Lamura, G., Mnich, E., Nolan, M., Wojszel, B., Krevers, B., Mestheneos, L., Dohner, H., & EUROFAMCARE Group. (2008). Family carers’ experiences using support services in Europe: Empirical evidence from the EUROFAMCARE study. The Gerontologist, 48, 752-771. Retrieved from https://doi.org/10.1093/geront/48.6.752

Lamura, G., Wojszel, B., Mnich, F., Krevers, B., McKee, K., & Mestheneos, E. (2006). Experiences and preferences of family carers in the use of care and support services. In EUROFAMCARE consortium (Eds.), Services for supporting family carers of elderly people in Europe: Characteristics, coverage and usage. Trans-European survey report (pp. 429-442). Hamburg: Hamburg University Medical Center of Hamburg-Eppendorf.

Lee, Y. R., & Sung, K. T. (1998). Cultural influences on caregiving burden: Cases of Koreans and Americans. The International Journal of Aging and Human Development, 46, 125-141. doi: 10.2190/PM2C-V93R-NE8H-JWGV

Leitão, O., & Monteiro, I. (2007). Escala de deterioração global. Tradução e organização. In A. Mendonça & M. Guerreiro (Coords.), Escala e testes na demência (pp. 9-13). Lisboa: Novartis.

Martín, I. (2005). O cuidado informal no âmbito social. In C. Paúl & A. M. Fonseca (Eds.), Envelhecer em Portugal (pp. 179-202). Lisboa: Climepsi.

Martin, P. (2002). Individual and social resources predicting well-being and functioning in the later years: Conceptual models, research and practice. Ageing International, 27, 3-29.

Martin, P., Hagberg, B., & Poon, L. (1997). Predictors of loneliness in centenarians: A parallel study. Journal of Cross-Cultural Gerontology, 12, 203-224.

Martins, J., Albuquerque, G. L., Nascimento, E. R. P., Barra, D. C. C., Souza, W. G. A., & Pacheco, W. N. S. (2007). Necessidades de educação em saúde dos cuidadores de pessoas idosas no domicílio. Texto & Contexto – Enfermagem, 16, 254-262.

Moro, J. C. B. (2012). Adultos mayores en funciones de cuidadores ancianos. Revista Cubana de Salud Pública, 38, 168-173.

Nishikawa, K., Harada, Y., Fujimori, J., Ebihara, Y., Arai, Y., Takayama, M., . . . Kitagawa, K. (2003). Possible model for successful care: Burden of caregivers of centenarians. Journal of the American Geriatrics Society, 51, 577-578.

Payne, S. (2010). White paper to improving support for family carers in palliative care: Part 2. European Journal of Palliative Care, 17, 286-290.

Perls, T., Kunkel, L. M., & Pucca, A. A. (2002). The genetics of exceptional human longevity. Journal of Molecular Neuroscience, 50, 233-238. doi: 10.1007/s12031-002-0039-x

Pinquart, M., & Sorensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18, 250-267.

Poon, L. W., & Cheung, S. L. (2012). Centenarian research in the past two decades. Asian Journal of Gerontology and Geriatrics, 7, 8-13.

Quinn, C., Clare, L., & Woods, R. T. (2010). The impact of motivations and meanings on the wellbeing of caregivers of people with dementia: A systematic review. International Psychogeriatric, 22, 43-55. doi: 10.1017/S1041610209990810

Reisberg, B., Ferris, S., de Leon, M., & Crook, T. (1982). Global Deterioration Scale (GDS) for assessment of primary degenerative dementia. The American Journal of Psychiatry, 139, 1136-1139.

Ribeiro, O., Araújo, L., Teixeira, L., Brandão, D., Duarte, N., & Paúl, C. (2015). Oporto centenarian study. In N. Pachana (Eds.), Encyclopedia of geropsychology (p. 1-7). Singapore: Springer.

Richmond, R. L., Law, J., & Kay-Lambkin, F. (2011). Physical, mental, and cognitive function in a convenience sample of centenarians in Australia. Journal of the American Geriatrics Society, 59, 1080-1086. doi: 10.1111/j.1532-5415.2011.03404.x

Robison, J., Fortinsky, R., Kleppinger, A., Shugrue, N., & Porter, M. A. (2009). A broader view of family caregiving: effects of caregiving and caregiver conditions on depressive symptoms, health, work, and social isolation. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 64, 788-798. doi: 10.1093/geronb/gbp015

Scazufca, M., Menezes, P. R., & Almeida, O. P. (2002). Caregiver burden in an elderly population with depression in São Paulo, Brazil. Social Psychiatry and Psychiatric Epidemiology, 37, 416-422. doi: 10.1007/s00127-002-0571-6

Sequeira, C. (2010). Cuidar de idosos com dependência física e mental. Lisboa: Lidel.

Serra, V., Watson, J., Sinclair, D., & Kneale, D. (2011). Living beyond 100: A report on centenarians. London: ILC-UK.

Sousa, L., & Figueiredo, D. (2007). Supporting family carers of older people in Europe: The national background report for Portugal. Hamburg: LitVerlag.

Sousa, L., Figueiredo, D., & Cerqueira, M. (2006). Envelhecer em família: Os cuidados familiares na velhice (2ª ed.). Lisboa: Âmbar.

Tarlow, B. J., Wisniewski, S. R., Belle, S. H., Rubert, M., Ory, M. G., & Gallagher-Thomson, D. (2004). Positive aspects of caregiving. Contribution of the REACH project to the development of new measures for Alzheimer’s caregiving. Research on Aging, 26, 429-453. doi: 10.1177/0164027504264493

Thornton, M., & Travis, S. (2003). Analysis of the reliability of the modified caregiver strain index. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 58, 127-132.

Ware, J. E., Kosinski, M., Turner-Bowker, D. M., & Gandek, B. (2002). How to score version 2 of the SF-12 health survey. Lincoln, RI: Quality Metric Incorporated.

Whitlatch, C., Schur, D., Noelker, L., Ejaz, F., & Looman, W. (2001). The stress process of family caregiving in institutional settings. The Gerontologist, 41, 462-473.

Yang, P. (2013). Surviving social support: Care challenges facing Taiwanese centenarians. International Journal of Social Welfare, 22, 396-405. doi: 10.1111/ijsw.12004

Yin, T., Zhou, Q., & Bashford, C. (2002). Burden on family members. Caring for frail elderly: A meta-analysis of interventions. Nursing Research, 51, 199-208.




DOI: https://doi.org/10.14417/ap.1482

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