Informal Care to People Suffering from Chronic Illnesses - Research Paper Example

 Abstract: Informal care-giving comprises of a major chunk of the care giving services and play a crucial role in the field of healthcare. Their contributions with respect to physcial and financial assistance are huge and entail an equal amount of stress. The nature of their duties entails coping with stressful situations on a day to day basis, as they are involved in providing care to their loved ones (including family members and friends) who are suffering with Alzheimer's and / or young adults diagnosed with chronic illnesses. Research suggests that a significant proportion of informal care givers have to cope with severe stress thus affecting their physical and mental health. It is on account of this reason that efforts must be made to reduce stress. This research paper, focuses on the overall issue of informal care-giving and concludes with recommendations and suggestions for reducing stress in the lives of such informal care-givers. Introduction: Individuals across different age groups are involved in providing informal care to their family and / or friends suffering from chronic illnesses. Their activities range from caring for them by assisting in day to day activities to providing end of life care. Such activities not only involve physical stress but mental stress as well. It could have a devastating effect on the informal caregivers, due to the nature of their jobs and criticality of the illnesses of their loved ones. Alzheimer’s is estimated to be the sixth largest cause of deaths in the U.S. annually. A significant number of patients suffering from critical illnesses, contrary to popular beliefs, are cared for by informal caregivers rather than in a formal setting (Arno, Levine, & Memmott, 1999; Brody, 1985; Kosberg & Cairl, 1992; Martire, Schulz, Wrosch, & Newsome, 2003; McAuley, Jacobs, & Carr, 1984). According to latest statistics, approximately 15 million people are involved in informal care to their loved ones suffering from Alzheimer’s, contributing to approximately 17 billion hours of unpaid care. The informal care-givers, often suffer from high amount of stress due to the critical conditions of their loved ones, thus impairing their own health in the process. It has been proved through research that caring for people suffering from chronic illnesses leads to an adverse and negative impact on the lives of the informal carers, resulting in strained relationships; and often leaving them no time for their families or for leisure, resulting in increased mental stress. Thus, it is of utmost significance to offer assistance and develop strategies to help such informal caregivers in coping with stress, and develop alternative strategies to help reduce or eliminate the physical and mental setbacks suffered by them, in the process of providing care to their loved ones. This paper on “Achieving Less Stress in the Lives of Informal Caregivers of Adult Children with Multiple Disabilities and the Elderly with Alzheimer” attempts to seek ways and means, which can successfully be applied to reduce such stress and improve the quality of life of the informal caregivers. - Problem Statement: Informal caregivers of persons with disabilities experience large amounts of stress due to their constant care giving responsibilities. - Research Question: If caregivers of the disabled adult child and elder received respite care (two or more day a week) intervention during the regular work week will they have lower stress than those caregivers who receive the standard caregiver services? - Background: Providing care to people suffering from critical illnesses entails significant amount of responsibility and dedication towards the patients, which might lead to situations of stress and affect the quality of life of the caregivers in a negative way. Owing to the critical nature of the illnesses of those around them, the caregivers often carry tremendous burden - both emotionally as well as physically which causes strain in their own personal life and relationships (Nolan et al., 1996). It is observed that the caregivers of those with Alzheimers suffer from high level of depression (Wright et al, 1999) leading to a direct impact on their quality of life (Zarit et al, 1980). Care giver statistics: - There are currently - 52 million informal caregivers providing care to their loved ones, who are over the age of 20 and are ill and disabled - 20.2 million of them, provide care and assistance to people over 18 years of age, and who suffer from a chronic illness or disability - Approximately 7 million people offer care and assistance on a daily basis to those over the age of 65 - According to statistics, Alzheimer is one of the most common diseases among people over the age of 65, as an estimated 4 million people are diagnosed with the disease nationwide (Caregiver.org, 2011) Significance: Coping strategies help in reducing such stress experienced by the caregivers to a significant extent (Lazarus & Folkman, 1984). The family which is involved in providing informal care to their loved ones must be offered support services which might help them in reducing their stress levels (Gwyther, Ballard, Hinman-Smith, 1990; Guberman, et al., 2001). They must also be offered education and training with regard to taking care of themselves and reduce stress (Cooke et al, 2001; Gallagher et al., 2000; Family Care Giver Aliance, 2004). There should be proper and effective plans which may help in reducing their burden (Lyons, Zarit, 1999; Zarit, Stephens and Greene, 1998) such as financial support for reducing their financial burden and other ancillary services for reducing their physical and mental stress. There must be appropriate interventions developed and implemented for providing support to those involved in informal care-giving services (Kaye et al., 2003). Literature Review The term informal care giving is defined by NHC as: “…caring for a friend, family member or neighbor who because of sickness, frailty or disability, can’t mange everyday living without help or support…[it] is not usually based on any formal agreement or services specifications. Informal care-giving is characterized by relationships and social expectations” (NHC 1998). For the purpose of this report, the term informal care givers include all those individuals who are involved in providing care and assistance to their family, friends or loved ones, on a day to day basis. According to evidence collected on the basis of research it is observed that a significant proportion of care givers involved in offering informal care, are ill prepared for undertaking such a huge task (AANC, 2004). Furthermore it has also been observed that they still continue t provide care and assistance despite having little or no support themselves, and that they were observed to be suffering from poor health themselves (FCA, 2006; Navie-Waliser, et al., 2002). It has also been widely observed through studies and researches conducted in the past that those involved in providing informal care suffer from high mental stress and are at high risk of suffering from severe depression (Teri et al, 1997; Schulz et al., 1997; Zarit, 2006). It is thus, of utmost significance to devise and develop alternative support plans aimed at reducing stress levels among the informal care givers. Research Design and Methodology: - Sample Population: Population: caregivers of the disabled adult child with physical, mental and cognitive disabilities and the elderly adult with Alzheimer’s. Data Collection: Data for the purpose of this study will be collected by way of structured interviews. The participants for this study would be screened through personal interviews and / or telephonic conversations. The sample population would include all those individuals who are involved in providing care to family members or friends who: are diagnosed with Alzheimer’s are young adults with disabilities The caregivers defined above, would be interviewed personally (i.e. personal interviews). The interviewees will be categorized on the basis of various characteristics such as their household income; ethnicity; number of people receiving such care; type of disease of the recipients i.e. whether they are suffering from Alzheimer’s or whether they are young adults with chronic disabilities; amount spend in providing such care; and the number of years for which they have been providing such care. Data Analysis: The collected data will be analyzed by way of 'Test of measurement equivalence / invariance (ME/I) to examine the latent structures with respect to caregivers and the recipients. It was observed that the informal care givers are indeed are exposed to high levels of stress both mental and physical and are in dire need of support and assistance themselves. Conclusion In conclusion, and on the basis of a generalized observation it can be stated that the need for effective is higher as expected. As the costs of formal care increases, the need for informal care givers too is expected to increase simultaneously. Furthermore, the fact that a graying population is increasingly dependent on informal care, more and more households would be offering informal care. Thus, it is important and inevitable to provide adequate and effective support to informal care givers, as the burden on them increases, the stress levels may also rise simultaneously. The section of population, providing informal care, is a major contributor to the health care industry and it is hence, required to consider their well being to ensure better overall health. References: Arno, P., Levine, C., & Memmott, M. (1999). The economic value of informal caregiving. Health Affairs, 18, 182–188. AAANAC: Alzheimer’s Association & National Alliance for Caregiving. (2004). Families Care: Alzheimer’s Caregiving in the United States. Chicago, IL: Alzheimer’s Association and Bethesda, MD: National Alliance for Caregiving Brody, E. (1985). Parent care as normative family stress. Gerontologist, 25, 19–29. Cooke, D., McNally, L., Mulligan, K., Harrison, M., & Newman, P. (2001). Psychosocial interventions for caregivers of people with dementia: A systematic review. Aging & Mental Health, 5(2): 120-135. Family Caregiver Alliance. (2004). California Caregiver Resource Centers 2004 Satisfaction Survey. San Francisco, CA: Author FCA: Family Caregiver Alliance (2006). Caregiver Assessment: Principles, Guidelines and Strategies for Change. Report from a National Consensus Development Coference (Vol. I). San Francisco: Author. Gallagher-Thompson, D., Lovett, S., Rose, J., McKibben, C., Coon, D., Futterman, A., & Thompson, L.W. (2000). Impact of psycho-educational interventions on distressed caregivers. Journal of Clinical Geropsychology, 6(2): 91-110. Guberman, N., Keefe, J., Fancey, P., Nahmiash, D. & Barylak, L. (2001). Assessment Tools Serving the Needs of Caregivers: A Document to Better Understand the Importance of Assessing Caregivers’ Needs. Montreal, Canada: School of Social Work, University of Quebec at Montreal. Gwyther, L.P., Ballard, E.L. & Hinman-Smith, E.A.(1990). Overcoming Barriers to Appropriate Service Use: Effective Individualized Strategies for Alzheimer’s Care. Durham, N.C.: Center for the Study of Aging and Human Development. Kaye, L.W., Turner, W., Butler, S.S., Downey, R. & Cotton, A. (2003). Early intervention screening for family caregivers of older relatives in primary care practices. Family Community Health, 26(4): 319–328. Kosberg, J., & Cairl, R. (1992). Burden and competence in caregivers of Alzheimer’s disease patients. Journal of Gerontological Social Work, 18, 85–97. Lyons, K. & Zarit, S. (1999). Formal and informal support: The great divide. International Journal of Geriatric Psychiatry, 14, 183-196. McAuley, W., Jacobs, M., & Carr, C. (1984). Older couples: Patterns of assistance and support. Journal of Gerontological Social Work, 6, 34–48. Navaie-Waliser, M., Feldman, P.H., Gould, D.A., Levine, C.L., Kuerbis, A.N. & Donelan, K. (2002). When the caregiver needs care: The plight of vulnerable caregivers. American Journal of Public Health, 92(3), 409–413. Nolan M., Keady J. & Grant G. (1996) Understanding Family Care: A Multidimensional Model of Caring and Coping. Open University Press, Buckingham. Schulz, R., Newsom, J., Mittelmark, M., Burton, L., Hirsch, C. & Jackson, S. (1997). Health effects of caregiving: The Caregiver Health Effects Study: An ancillary study of The Cardiovascular Health Study. Annals of Behavioral Medicine, 19: 110-116. Teri, L., Logsdon, R., Uomoto, J., McCurry, S.M. (1997). Behavioral treatment of depression in dementia patients: A controlled clinical trial. Journal of Gerontology B: Psychological Science and Social Science, 52, 159-166. Wrosch, C., Schulz, R., & Heckhausen, J. (2002). Health stresses and depressive symptomatology in the elderly: The importance of health engagement control strategies. Health Psychology, 21, 340–348. Wright L.K., Hickey J.V., Buckwalter K.C., Hendrix S.A. & Kelechi T. (1999) Emotional and physical health of spouse caregivers of persons with Alzheimer’s disease and stroke. Journal of Advanced Nursing 30, 552–563. Zarit, S., Gaugler, J. & Jarrott, S. (1999). Useful services for families: Research findings and directions. International Journal of Geriatric Psychiatry, 14: 165-181. Zarit, S. (2006). Assessment of Family Caregivers: A Research Perspective. In Family Caregiver Alliance (Eds.), Caregiver Assessment: Voices and Views from the Field. Report from a National Consensus Development Conference (Vol. II) (pp. 12 – 37). San Francisco: Family Caregiver Alliance. Caregiver.Org (2011) Care giver statistics [Online] Available from: http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=439 [Accessed: April 30, 2011] Read More