Perspectives of Women with Dementia Receiving Care from their Adult Daughters

Abstract

It has been noted that very little efforts are being channeled towards getting to know some aspects of Dementia health care from the victim’s point of view. This study seeks to qualitatively investigate how women suffering from Dementia, perceive the care accorded to them by their adult daughters. Since samples of participants are drawn from the elderly women who are already affected by the condition, it has been realized that gender plays an immense role in informing what they were going through. This factor does not exist in a vacuum but as a product of the culture of their society. A well designed sampling method will ensure a balanced achievement of the main objective leading to the tackling of the research problem. In the final analysis, there will be policy propositions on how this issue can be approached the best.

Key words: dementia, care, women

Introduction

So as to effectively investigate the subject matter, the study will encompass three broad concepts. In a broad sense, it will give a background to the problem. This will be done by first stating the problem followed and by a review of the literature prior to the study. Out of the literature, sound theoretical presuppositions will be put forward in the context of the study objectives. The second component of this study has to be done with the actual investigation. It will thus include the hypotheses upon which the investigation is to be based, followed by how the study has been designed. The third and final component will have to do with some considerations with regard to ethics surrounding the whole process. Thereafter, an informed conclusion will be drawn with respect to how the problem was stated, how it was investigated and the reliability, validity or authority of such a study.

Statement of the Problem

The researcher is faced with a difficult question here. The nature of the condition in question is that the victim is not able to care for herself. Therefore, it would naturally mean that there need to be policies to support local systems to deal with this condition in a professional manner. That is not the case, however. The homecare system is not only grossly underfunded but hospitals and social services are being restructured. This has continued to increase pressure on the family members who may not even have the knowhow to offer quality care to their older mothers. The other challenge comes with culture. Since women are always perceived to be the care givers, it ‘becomes a burden’ to them, especially the adult daughters.

There is, thus, a huge challenge ahead. The need for specialized home-based care has been substituted with family care giving which is already suffering from cultural attributes. Actually, gender here is rightly placed as a determinant of health. It is therefore imperative to hear the perspective of the victim.

Literature Review

The Handbook of Neurosurgery defines Dementia as loss of mental abilities, such as judgment and memory, which had been earlier attained. This condition could be more serious until it causes lack of functionality and even language impairment (Greenberg, 2010). It is therefore highly advised that Dementia care giving should be accompanied with a professional approach.

From the onset, it has to be made clear that literature on either home-based or family care for Dementia care is limited (Ward-Griffin, Bol, & Oudshoom, n.d). What we have therefore are bits and pieces. The trio calls for more research into the relationships between female care givers and their mother suffering from Dementia. Moreover, an important aspect of health in society keeps on resounding: culture.

Culture, simply put is peoples’ way of life. It comprises of attitudes, norms and beliefs that make societal knowledge. Every culture has perceptions and beliefs about some illnesses and psychiatric conditions. Culture determines how care is given. It determines who should care for whom. It also determines principles of reciprocity. While younger adults expect a give-and-take situation, elderly mothers find themselves giving more than they receive. Actually, that is the cultural conception which has of course not been well internalized by the young female adults. So in situations where mothers are not giving more service to their daughters, the latter feel that something is amiss. It therefore becomes worse with Dementia care giving. A daughter who is supposed to receive more is now giving more. It is now critical at this point in time to get the perspectives of those affected by Dementia.

Readings on Dementia have shown that its prevalence increase with age. It is therefore almost true that more mothers will be suffering from Dementia than their adult daughters. Studies have anyway shown that even the young get Dementia but the former proposition occupies a firmer ground. It therefore makes a lot of sense that the perspectives of the victims could be sought. Of course the earlier tenet was based on the allegation that people with Dementia are not able to express themselves which goes against what Helmchen and Sartorius (2010) discouraged. According to them, the dignity of the individual comes first. Indeed, research has shown that individuals with mild Dementia can actually express themselves to some extent. It is therefore useful to hear their point of view.

The “Perspectives of Women with Dementia Receiving Care from their Adult Daughters” specifically provides useful insights on the way the women there in view things. People with Dementia feel socially isolated. They also feel that they are depending too much on the care giver. Additionally, it has been established that they worry that they cannot get a meaningful occupation; or if they do, performance becomes another challenge. In terms of care reception, they are quick to note whenever change of care givers following worsening of their condition. Dementia victims also find it difficult to negotiate and have social relationships with their caregivers.

Theoretical Framework

There are two major theoretical frameworks in play here: the life-course perspective and the socialist-feminist theory. The latter seeks to demystify relationships between women by proposing stronger bonds, especially between mothers and daughters. However, the Dementia situation leaves many questions unanswered if not breed confusion. If for sure there are supposed to be stronger bonds between mothers and adult daughters than there are between fathers and adult sons, then why does this rift come about? Socialist feminists try to explain that it is because of generational difference that daughters feel overburdened when taking care of their mothers with Dementia.

The query raised above could also be answered by the second theory which is more interactional. It holds that current situations should not determine how much you give or receive but rather call for an understanding that the mother-daughter relationship, which has always been good, should always remain. A current situation should not destroy a relationship that has always been. Actually, this is a good basis for training family caregivers who, using this approach, are able to offer prolonged care without feelings of burden.

These two theoretical propositions form a good ground for basing this study. A brief synthesis of the two theoretical positions points towards a humane approach to human society. The authors seem to understand well the workings of a human society. They also seem to be well conversant with the cultural dimension, as seen in the analysis of the role that gender plays in this whole Dementia care giving and receiving. This study adopts them both but at a higher level of functionalism; all aspects present in the human society work in harmony for the sustenance of the whole society. In other words, those who are healthy should support those who are not.

Objectives of the Study

As stated at the beginning, the major objective of the study is to establish how women suffering from Dementia perceived the care accorded to them by their adult daughters. This perception is to be achieved by breaking it down into several aspects; major among them relationships between daughters and mothers and perceptions of unbalanced reciprocity. The study will also establish the role of culture in informing peoples’ perceptions towards the sick, the caregivers, occupations and life in general.

Research Hypothesis

At the core of this study is the belief that opinions of those who suffer from Dementia, especially women, should not always be provided by caregivers. It is very valuable for those who are being taken care of to express themselves as long as the state of Dementia is not yet very serious.

It is also proposed that care giving will only be effective when it is done professionally and when it will be entrenched into the health policy. It will thus turn from a mere family care giving affair to home-based care of dignified persons of the society who are recognized by the mainstream health structures.

Study Design

There is a need to employ workable recruitment strategies for respondents for instance through the community centers and doctors’ offices. A key consideration is to get doctors’ assistance in establishing those who have mild and moderate impairments of their cognitive abilities. The sample is designed in such a way that a mean age of 88 is attained. The samples also ensured representativeness by considering aspects like education, marital status and the like. The study will be interested in knowing how mothers with Dementia and their daughters explain what they go through. This will be achieved through semi-structured interviews, which allow some bit of probing.

Ethical Considerations

All ethical issues concerning this issue have been considered. First and foremost are the medical and psychiatric considerations related to Dementia victims. As a result, sampling will be done with the help of doctors who already know the severity of Dementia cases. Advanced cases are not to participate in the study. Investigations and studies of the human subject are the subjects to ethical reviews. The study is, thus, approved by the Ethics Review Board after which sampling began. According to Helmchen and Sartorious (2010), the most important rule is to respect the individual.

Conclusion

This study intends to get the perspectives of the women who are subjects of care giving. This can only be achieved through a systematic approach in which the subject matter is stated. This study has also reviewed existing literature on the subject matter. It has been indicated that there is a need for concerted efforts in filling up the missing links in studies, researches and publications on this subject. In the light of these reviews, a theoretical basis has been set as a reference point and a guiding factor for the whole process. The two theoretical frameworks suggested will indeed offer a benchmark not only for this study but also for future discourses on the same matter.

Going into the more practical aspects of the study, objectives have been set and a few propositions made on what direction should the study take. Finally, a design by which the study will be carried out has been set out. Sampling is done in a manner consistent with the objectives of the study; to ensure representativeness and validity at the same time. Validity of data has been assured by selecting the not-very-advanced Dementia victims. And of course the ethical factors to be considered. A board charged with review of researches on human subjects has been established.

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