Factors affecting social workers' perceptions of end-stage dementia patients

Social Workers' Perceptions revised

Social Workers Perception About End-Stage Dementia

Social Workers and Gerontological Patients

Therapeutic Nihilism

Impacts of Dementia

Role of Hospice Social Workers

Interaction between the Social Worker & Dementia Patients

Limitations in Earlier Studies

Research Question No.1

Research Question No.

Research Question No.

Research Question No.

Research Question No.

The healthcare sector is facing scarcity of medical professionals and healthcare workers globally. Alongside other fields of health care, the field of social work is also facing asimilar problem. Researchers have proved that there is visible reduction in the number of social workers interested in treating elderly patients (gerontological field of social work). The ratio of healthcare workers dealing with elderly patients having cognitive impairment is even lower. A similar case is observed with patients suffering from dementia. However, the number of social workers who are interested in treating such patients is limited. With an increasing number in patients of dementia, a doubt arises if there will be an equal number of social workers available for treating these patients in the future. If we follow an assumption that there will not be sufficient social workers pursuing for treatment of elderly dementia patients, it is clear that they will be forced to interface with gerontological patients with cognitive impairment; whether they are recruited in a similar setting or have prior required experience or not. Hence, a need for suitable research arises which would be related to identify the factors making these social workers reluctant in treating patients with end-stage dementia. Furthermore, this research will also identify the means to motivate them.

Since there is limited literature available related to end-stage dementia and the special needs of the patients suffering from it; there is limited awareness found in general public specifically in social work segment. End-stage dementia patients lose the ability of communication performing only daily functions of life. They can live up to 20 years suffering from this impairment, without showing any signs of improvement. Due to these factors, many social workers are forced to question the effectiveness of their efforts with reference to improvement in the quality patients' life. Since they are no substantial and clear answers available; many of these social workers find it difficult to continue their practice in this field.

Due to the rising number of patients suffering from cognitive impairment is rising; there is a need for substantial number of social workers who are trained in treating patients with end-stage dementia (Pearce, 2007). Considering the current trend of interest shown by social workers, a need arises to evaluate the following factors:

Why the social workers are reluctant to practice in this field?

What are the causative agents?

What are the barriers perceived by them?

What can be done to improve this situation?

The given research proposal outlines the problem as identified along with the purpose of this research. The main intent of this research is to discover the reasons behind the reluctance of social workers' practice in this field and also present possible solutions for this problem. Along with the identified reasons and solutions to this problem, this research is intended to provide a perspective of the whole population of social workers dealing with end-stage dementia instead of presenting a view of social workers working in a certain environment (such as hospice settings only instead of all the social workers). Furthermore, the limitations of earlier researches related to this area have been considered and necessary measures have been taken to overcome these limitations in order to reach an effective conclusion.

Literature Review

Social Workers and Gerontological Patients

Where there is scarcity of suitable talent in various other disciplines, the field of social work is no different. Researches have shown that the current population of social workers is showing less interest in dealing with older adults (Acker, 2011). Now it is established that social workers are showing less interest in treating such patients. The ratio is even lower for patients suffering from cognitive impairment (Helen & Padilla, 2012). A similar scenario is seen with patients having dementia. Due to an increasing number in patients suffering from dementia, there is still a concern if we will have sufficient number of social workers to treat such patients in the near future. Considering this fact, if a desired number of social workers for end-stage dementia patients is not available then the few number of social workers will be forced to treat such patients; whether they have the required training or not. Hence, there is a need for suitable research which would identify the reasons of reluctance in social workers to treat end-stage dementia patients and the suitable means to motivate these social workers.

Therapeutic Nihilism

Therapeutic nihilism is a belief that no remedial measures will have a tendency of improve the health conditions of the patients with cognitive impairment (Sanders & Swails, 2011). Apparently, most of the social workers have therapeutic nihilism which decreases their willingness to treat such patients and also decreases their motivation level. This general belief greatly affects the interest and intent of social workers. Due to this effect, the recruitment and training of the social workers in this particular field not only becomes difficult but also hampers the quality of their work. The professionals in dementia care are seen as more prone to therapeutic nihilism. When the end stages of dementia begin; the social worker suffers from a greater degree of therapeutic nihilism and the feeling of uselessness gains a major ground. This is so because during this period, the cognitive impairment of the patient is at its peak and the communication between the social worker and the patient is highly ineffective. Furthermore, the patient usually shows no or very little improvement. Although the general standards of social work and the relevant code of conduct makes it mandatory for the social workers to treat all the patients with equality irrespective of their physical and mental condition. The rationale behind these standards is the belief that every patient has a tendency of getting positive results by the therapeutic interventions adopted to benefit the patient and make his/her current state better. However, these standards have become difficult to follow as most of the traditional practices of social work require a mutual communication between the patient and the social worker. Due to this mutual and effective communication, the client gets involved during the intervention and the process of receiving feedback becomes easier. Where the patient appears to be suffering from cognitive impairment specially end-stage dementia, communication with such patients becomes very difficult for the social workers since the patient is unable to communicate and perform regular functions of life. Hence, the social work professionals become highly demotivated and end up questioning the effectiveness of their services in dealing with such patients. Such feeling as the lack of value, meaning and purpose makes them lose their interest in this particular discipline for further practice (Sanders & Swails, 2009).

Impacts of Dementia

Dementia has been characterized as one of the major mental illnesses which usually appears after the age of 65 but may also appear before that. The visible impact of this illness is mental loss hampering the memory of its bearer. Even though, impairment of memory is the most evident symbol of this illness, the other physical and mental health losses are not limited to it. Inability to communicate and enjoy the quality of life along with effectively dealing with other people which includes the caregivers, also present as a major difficulty caused by dementia. Dealing with the patients of dementia is exceptionally challenging because the quality of life of the patient is highly affected due to various side effects of this illness (Enck, 2010). The most evident outcomes are excessive weight loss, difficulty in communication due to fewer verbalizations, difficulty in intake of proper diet, requiring assistance with almost all the major activities of life, difficulty in mobilization, or even sit without assistance, various other infections such as urinary infections (Corr, Corr, & Ramsey, 2004). All these situations become highly challenging for the social care workers when they become unable to perform assessment of the current status of patient's health (both physical and psychological). As a result of this failure, the social workers also face difficulty in devising suitable treatments accordingly. The state of dementia can be highly complicated where the patient's situation can get worse and it may prolong up to 20 years (Alzheimer's Association, 2005). In the meanwhile, various changes (both positive and negative) are seen in the health status of a patient accordingly. Hence, evaluation and determination of the current status of patient can be highly challenging for the concerned social worker especially at the terminal state of the disease.

It is important to note that the patients of dementia along with other physical problems also suffer from a high degree of demotivation and emotional distress. As a result, the degree of cooperation between the patient and the social worker also decreases to a considerable extent. This lack of cooperation further worsens the situation for the respective social workers and the interest of social workers to treat that particular end-stage dementia appears to decrease exponentially. As the number of dementia patients with end-stage illness is increasing; a higher number of social workers will be required to treat them in the future. It is important to evaluate the behavioral patterns of social workers dealing with such patients. The main purpose of such research is to identify the possible causes for such behavior so that necessary measures can be taken to reverse the situation.

Role of Hospice Social Workers

As shown by the statistics presented by NHPCO, 2005, although more than 81% of end-stage dementia patients are adults over 65 years, only 8% are found to be treated in hospice settings. Since dementia lists under the top five illnesses causing death in elderly patients above 65 years, this equates to only a fraction of the thousands of patients who die annually of dementia receiving specialized end of life care provided by hospice programs (Simons et al. 2011).

When end-stage dementia patients are present in hospice settings, presence of social workers adds a psychological perspective to the organizational setting. These hospice social workers tend to perform a variety of functions such as counseling, brokerage of community resources, advocacy for end-of-life wishes and also educating the family of the patient about the dying process. All these roles emerge out of systems theory and promotion of patient's self-determination (Sanders & Swails, 2011). In addition to that, it is also a responsibility of the social worker to provide concrete and relevant information regarding patients' current state to their families. Furthermore, the nature of medical decisions that may be required in the process of treatment and also about the dying process, is the information that a social worker is expected to share with the family of the patient. (Shanley et al., 2011).

As far as the patients having end-stage dementia are concerned, the social workers' responsibility towards patients' caregivers and their other family members increases even more. However, this does not reduce the extent of responsibility of social workers to the patient. All the traditional roles played by the social worker while dealing with patients' family does not excuse them for not treating the patient rightly. This means that the role of social worker as a care taker towards the patient enhances when the patient is suffering from end-stage dementia (which further makes them unable to communicate and fail to show substantial responses to the treatment). This one-way communication and input of efforts makes the social workers feel discontent while interacting with the patient. However, the case might be opposite while dealing with the patients' families and caregivers. Such scenarios make the social workers face difficulty in identifying actual definition of their role with reference to end-stage dementia patients causing role ambiguity.

According to Sanders and Swails (2009), hospice social workers define their interaction with patients with dementia as "limited, ambiguous, and not rewarding" and commented that visits to patients with end-stage dementia were not a good use of time or expertise (given the perception of the social workers that meaningful therapeutic relationships could not occur). Hence, there is a visible strain on the relationship of social workers and patient which makes it rather challenging for hospice social workers to provide required care services to patients with dementia. Research has proved that the health of therapeutic alliance between the social worker and the patient depends on various factors where one is in a considerably healthy state than the other (Sanders and Swails, 2011). The research further leads to a conclusion that a cognitive impairment in patient can lead to a prevention of therapeutic alliance's formation i.e. therapeutic relationship may not develop between the patient and social worker. In case of end-stage dementia, this theoretical perspective is valid. As a result, an assumption can be made that there is some probability that an ineffective relationship between the end-stage dementia patients and the respective social care worker may exist from this inception. Since the relationship is ineffective from the start of the treatment; there is a possibility that the social worker may not be able to provide the required level of care.

Interaction between the Social Worker & Dementia Patients

Symbolic interactionism can act as a fundamental tool for understanding the significance of social worker's role while treating stage-end dementia patients. This phenomenon levies special emphasis on human interaction especially the one that takes place between the individual / group and those around him. When the symbolic interactionism is considered with reference to the relationship between the social worker and end-stage dementia patient, the patient is considered as the secondary person. Looking at this model, there are three rationales involved: (1) People respond to each other on the basis of the meaning of relation which is created between them, (2) meanings are formed through interactions, and (3) these meanings are interpreted through a variety of factors that people use to make sense of situations (Sanders & Swails, 2011). Factors affecting the profile and behavior of any social worker includes past experiences with dementia patients, social values and other situational variables (which have a tendency of influencing the therapeutic relationship between the patient and the social worker).

All these factors collectively give rise to a need of conducting an empirical study which would define the relationship between end-stage dementia patient and the social work along with a thorough analysis of the possible reasons why the social workers face difficulty in complying with their fundamental principles such as equality while treating dementia patients. Along with that, the possible measures which would make the social workers more engaged with their patients of end-stage dementia, can also be find a solution to this problem.

Limitations in Earlier Studies

Various other studies have been conducted in this field of study (Sanders and Swails, 2011). However, there were certain limitations that these researches faced. For example, the other studies were projecting a behavioral analysis of social workers in the form of focused groups. Variables such as education, background, past experiences, made it difficult to apply these results onto general population due to differences in views. Agencies not dealing with dementia may have a different ideology all together as compared to those who treat end-stage dementia patients. There was also an existence of inherent biases since most of the research took place in the form of focused groups. Other inherent biases such as presence of supervisors and co-workers, fear of disclosure and engagement in the group-think, were also present. Since environmental factors had a tendency of affecting views of the subjects, therefore, there is a possibility that accurate views of social workers could not be obtained.

Considering these limitations in the earlier researches, it is important that a research model should be devised which would enable the outcomes to be applicable on the overall population. Additionally, the given research method should receive an accurate feedback from the subjects which are a part of the research so that a concrete and conclusive evidence can be obtained.

Research Problem Statement

According to the statistics provided by Alzheimer's Association, every 8th American is suffering from dementia in one way or another and this count is rising. Hence, a need arises for substantial number of social workers to be recruited in the hospice facilities dealing with end-stage dementia. Where equality acts as the fundamental principle for the social work practices; it demands the social workers to treat their patients irrespective of their health status. Furthermore, these social workers are required to develop a belief that every client has a tendency of benefiting from the therapeutic interventions. Since the number of end-stage dementia patients is increasing, the supply of experienced and trained social workers does not match the demand in this field.

Most of these health workers are observed to experience therapeutic nihilism which itself is a belief that no remedial measures will have a tendency of improving the health conditions of the patients (Sanders & Swails, 2009). This general belief greatly affects the interest and intent of social workers to get trained in treating patients with cognitive impairment and practice in this field. As a result, the induction of social workers in this particular domain has become really difficult. On the other hand, due to demotivation of these social workers, the quality of their work has also decreased considerably. The social care professionals in end-stage dementia care are seen as more prone to therapeutic nihilism.

The objective of this research is to evaluate why the social workers are reluctant of providing health care services to end-stage dementia clients. Another objective is to identify the reason for the declining number of practitioners in this field. Furthermore, in addition to this main area, the peripheral problems are an identification of the concerns of social workers and the barriers perceived by them which are prohibiting them from making contributions to patients' health care. This research has special significance since there is limited literature available on the treatment of end-stage dementia patients and even less for providing proper guidance (related to this illness) to the social workers and other caregivers (Sabbagh & Martin, 2011).

Purpose Statement

The purpose of this research will be to describe the factors that are affecting social worker's decisions and making them reluctant in pursuing their career in the treatment of end-stage dementia patients. The social workers participating in this qualitative phenomenological inquiry will be employed in nursing homes, assisted living facilities and hospice agencies located in the metropolitan area of Atlanta, GA. Other strategies of inquiry will include questionnaires and group methodology. An examination of the social workers' self reported experiences will be assessed. Finally, perceptions of this special population will be used to identify the worker's beliefs, principles and practices with relation to end-stage dementia clients. It is important to note that earlier researches could only be applied on limited segments or strata instead of the overall population of social workers.

Hence, measures will be taken to ensure that the feedback received through the above mentioned a research method has a very limited risk of bias. For this purpose, isolated environment (without the influence of peers and supervisors) would be used. Along with that, social workers from different settings will be employed but only those who have exhibited prior experience of dealing with end-stage dementia patients will be allowed to participate so that only relevant information is obtained.

Research Questions

Research Question No.1

What is the behavioral pattern of social workers dealing with end-stage dementia and how is it different with the one exhibited while treating patients with other forms of dementia?

The number of individuals diagnosed with Alzheimer's disease or an associated diagnosis of dementia is estimated to reach as high as 16 million within the next 40 years (Martin & Sabbagh, 2011). The purpose of this question is to provide the background for the development of this learner's research topic, problem and purpose, as well as provide facts and figures about dementia itself. The expected outcome for the proposed question is to provide a clear picture of how the behavior pattern of the social workers has changed and how it is different while treating patients suffering from other forms of Dementia.

Research Question No. 2

What are the possible factors involved which have a potential of affecting the ability of social workers to remain motivated to their work while dealing with clients diagnosed with end-stage dementia?

This question was chosen because it reflects the main idea of the learner's topic as we attempt to explain why the number of social work professionals choosing to work with dementia clients and their families is declining (Sanders & Swails, 2009). The expected result for this particular question is the information which will constitute of personal experiences of social workers while dealing with end-stage dementia. This information will help gain an understanding regarding the selection or rejection of this field of practice by the social worker.

Research Question No. 3

What are the barriers that social workers encounter in their interactions with end-stage dementia clients and how can these barriers be overcome?

Patients suffering from end-stage dementia have certain needs which require therapeutic interventions by specially trained individuals as the needs of such patients are different from patients suffering from other forms of dementia and cognitive impairment (Martin & Sabbagh, 2011). The purpose for this two-part question is to point out specific examples of "barriers" which social workers face in their day-to-day interactions with end-stage dementia clients and their families. The expected outcome for the proposed question is that as social workers report about the various barriers they have encountered while caring for end-stage dementia patients and their families; they will also provide examples of ways these barriers were addressed and overcome which in turn can prove to be invaluable to other social workers.