Perspectives of Women with Dementia Receiving Care from Their Adult Daughters - Essay Example

? Critique a research Study (Qualitative) 20th March The paper by Ward-Griffin et al. (2004) reports on an empirical research project exploring the perceptions and experiences of 10 women with mild to moderate cognitive impairment due to dementia who were all being cared for by their daughters in the community. The way gender was constructed proved to be an important dimension of the care situation. Using feminist and end of life-course approaches, the study concluded that specific cultural affected the relationship of these women with their daughters, and this in turn had implications for their experience of receiving care. A number of recommendations for practice, policy and research were made in the light of these findings. The problem that the paper seeks to address is the need to find better ways of supporting the rising number of cases in Canada where an elderly woman is cared for in the community by an adult daughter. This problem has arisen partly because of the demographics of Canada, which show a lengthening of life expectancy in general, and a predicted rise in the number of age related diseases, including Alzheimer’s disease and other kinds of dementia. Another factor that is causing the numbers of such cases to rise is the rising cost of care home provision, and the closure of many care homes, leaving by far the majority of dementia sufferers to be cared for by their families in the community, often with little or no support from professional carers. The purpose of this study is then to address this gap in the literature and investigate the perceptions and experiences of mothers who are suffering from dementia and who are cared for by their adult daughters. Literature Review Since the emergence of feminist theories in the middle of the twentieth century there has been a growing awareness of the particular problems and issues that face women in largely patriarchal Western societies. Considerable research has been carried out on the relocation of care from home to a residential setting and even here the continuing care of family members can be beneficial to dementia sufferers, so long as the relationship and interaction between professional care staff and family carers is carefully managed. A study by Maas et al. (2004) on a Family Involvement in Care Intervention carried out in 14 American care home settings concluded that the use of such a structured program improved the caregiving experience of family members in nursing homes, and also had positive effects on the attitudes of nursing home staff towards family caregivers. Dementia affects whole families, because it changes the way that the dementia patient relates to others, and requires adjustments in the way that the family sees the mother role in particular. A study by Mui (1995) confirmed that families who enjoyed good relationships before the onset of dementia generally coped better with the diagnosis and rallied round to provide better care for their loved one, than families which had previously had strained relationships. Because care in the community is a relatively recent phenomenon, there has until now been a focus on care home treatments of dementia, with less research into women with dementia who remain in the community. When this has occurred, it has often focused on the effects of the situation on carers, who can suffer stress due to the demanding nature of the illness (McCarty, 1996). There has been very little research from the perspective of the patients themselves, especially when they are cared for in their own home and outside the mainstream healthcare system. The paper by Ward-Griffin et al. (2006) builds on these earlier studies and takes them one step further by eliciting views directly from women with dementia themselves. Theory This paper explicitly states that it is guided by feminist and life-course perspectives (Ward-Griffin et al., 2004, p. 183). This implies an awareness of the social context of care, and the expectations, inequalities and pressures that Canadian society attaches to specific gender roles and in this case with specific reference to the female gender. The concept of end of life-course care implies an acceptance of the chronic and irreversible nature of some conditions that affect older people, and a commitment to dealing positively and sensitively with this situation, regardless how long or short this period of care is likely to be, helping the patient and her family to come to terms with the diagnosis and make the best of the remaining time that the patient has, right up until the time of death. There is a focus on the quality of the patient’s life, and a holistic treatment of the person, rather than a concentration on the patient’s disease. These are relatively new theoretical frameworks which depart from traditional, biomedical and often paternalistic styles of care, which emphasize medicalization and treatment even when this brings no significant improvement to the outcomes for the patient. The use of a feminist approach facilitates an examination of the issues from the perspective of women, recognizing that medical science has too often in the past treated patients in a generic way, with no recognition of the different experiences that women have in life. There is greater pressure on women than on men to undertake a caring role, for example, and this can affect the way that mothers and daughter feel about themselves and each other when dementia occurs in a family. Feelings of guilt on the part of woman with dementia, or of the daughter can arise from the situation of dependence that dementia brings. Feminist and end of life approaches can furnish researchers with new models for analysing the care situation which value the different contribution of women in positive ways, and which give a fair and proper space to professional carers, family carers and patients alike. These approaches are especially relevant to the nursing profession when there is increasing financial constraint in the healthcare sector, and ways have to be found to work with the whole community in order to share the responsibility with an increasing number of different agencies, and no- qualified personnel. Patient centered care is expected nowadays, and these approaches give patients a voice in the research process, thus ensuring that any insights properly consider their perspective and opinions. It is only in the last twenty years or so that research has begun to argue for a greater input from dementia sufferers themselves, as for example in the work of Cottrell and Schultz (1993). More recently Moore and Hollett (2003) have argued that dementia patients should have more say also in what kind of research needs to be done in future, in order to improve the care of dementia sufferers. This recent work has demonstrated that dementia patients, despite the debilitating effects of their condition, are often able to articulate very clear views about their care and there is a strong ethical case for letting these views be heard. In the past such voices have been ignored and excluded from debates about patient care and so the literature has at last begun to redress this imbalance with targeted studies on patients with dementia. Research Questions There are three stated research questions in this study: “1. How do women with AD and their adult daughters describe their experiences of receiving/providing care? 2. How do women with AD and their adult daughters describe their relationship? 3. What contextual factors influence care provided/received? Research Hypothesis Because the study is an exploration of points of view of patients, it does not have a narrowly defined hypothesis at the outset which could influence or restrict the evidence gathered. There is an implicit hypothesis, however, to the effect that more information from the patient side will be useful to researchers, carers and policy makers. Furthermore, if the patients make suggestions and these are implemented, there will be direct benefits for these and future women with dementia. There is also a clear intention to give the women a voice, and let the academic side of this issue be informed by the real life experience side. This is a very important part of the study, because it empowers patients to take part in an important and influential medical domain Study Design and Ethical Considerations The study was part of a much larger suite of qualitative studies on mother-daughter dyads within the care process of dementia. The design involved a series of audiotaped interviews of about 45 minutes, brief demographic questionnaires and written field notes were made to capture the researchers’ insights, perceptions and observations. Visual and other aids were used to assist respondents with the cognitive tasks involved. This helped to ensure that participants were not disadvantaged by inability to comprehend questions or express answers. In one case extra time was given, to allow one participant to recap material with her family members. Researchers expressly sought to build rapport with the women. In researcher team discussions around the narratives that emerged in this process, a model of the different kinds of caring relationship experienced by these women was drawn up. A major outcome of the study was a vindication of the interview and evaluation method. A rich picture of the whole care receiving domain was created, and new avenues for further research were discovered. Some limitations were found to exist, for example there was insufficient attention to aspects such as social class and financial status, and the researchers suspected but could not prove that patients with fewer financial resources were more dependent upon their daughters, and therefore also had more ambiguous feelings about being cared for by their daughters at home. The study also concentrated on women who were in the early stages of dementia, and the researchers acknowledged a moral and academic need to investigate further the views of women who were experiencing later stages in this condition. Despite these limitations, the study contributes valuable knowledge about the way women with dementia perceive their situation, and a model for understanding the way that social expectations influence their sense of identity. This suggests that in the future there might be psychological interventions that could be made to ease the perceived burden upon both mothers and daughters, as well as practical measures to provide actual daily support in the caring and receiving roles. All in all, this paper is an excellent illustration of the way that modern nursing is moving away from a restrictive, mainly bio-medical way of dealing with dementia, and towards a more holistic and patient centered approach that integrates the contributions of the patient, her daughters, and the professional care team in a collaborative way in the interests of better patient care. References Cotrell, V. & Schultz, R. (1993) The perspective of the patient with Alzheimer’s disease: A neglected dimension of dementia research. Gerontologist 33(2), 205-211. Maas, M.L., Reed. D., Park, M., Specht, J.P., Schutte, D., Kelley, L.S., Swanson, E.A.,Trip-Reimer, T. & Buckwalte, K.C. (2004) Outcomes of family involvement in care intervention. Nursing Research 53(2), 76-86. Reprinted in D.F. Polit & C.T. Beck (Eds) (2010) Study Guide for Essentials of Nursing Research: Appraising Evidence for Practice. Seventh edition. Philadelphia: Lippincott, Williams & Wilkins, 2010, pp. 182-197. McCarty, E.F. (1996) Caring for a patient with Alzheimer’s disease: Process of daughter caregiver stress. Journal of Advanced Nursing 23(4), 792-803. Moore, T.F. & Hollett, J. (2003) Giving voice to persons living with dementia: The researcher’s opportunities and challenges. Nursing Science Quarterly 16(2),163-167. Mui, A. (1995) Caring for frail elderly parents: A comparison of adult sons and daughters. Gerontologist 35, 86-93. Ward-Griffin, C., Bol, N. & Oudshoorn, A. (2006) Perspectives of Women with Dementia Receiving Care from Their Adult Daughters. Canadian Journal of Nursing Research 38(1), 120-146. Read More