This study seeks to explore patients’ living experience with tube feeding and how poorly they do after this intervention from their caregivers’ view as the patient may exhibit changes in cognitive or language function that affect their ability to understand or express their feelings and experiences.
The proposal opens with an introductory chapter that gives a brief overview of patients' problems suffering from dementia. It further highlights the research objectives and the resulting research questions regarding this study.
The introduction is followed by a brief literature review that discusses previous research about dysphagia quoted in this research. The methodology section gives a compact description of how the research will be conducted to collect the primary data.
It is proposed that the paper follows the structure stated below:
o Research Objectives
o Research Questions
● Literature Review
● Research Methodology & Approach
● Research Analysis
● Ethical Issues
Dementia cannot be classified as a specific disease. Rather it encompasses a group of symptoms affecting memory, thinking, and communication abilities severely enough to interfere with daily life functioning. Dementia can be caused by either a progressive brain cell death or neurodegenerative diseases such as head injury, a stroke, or a brain tumor.
There are various types of dementia such as Alzheimer’s, vascular dementia, Mixed dementia, Lewy body dementia, and Parkinson’s disease. Dementia symptoms include memory loss, disorientation, mood changes, eating and communication difficulties (MacGill,2016).
The impact of cognitive status on the swallowing mechanism is unclear (Riquelme et al., 2016). However, Riquelme& Tristani (2014) verified a relationship between cognitive and physiologic changes in the swallowing mechanism for persons with cognitive decline due to dementia. Individuals with dementia experience sensory loss that leads to disruptions of bolus organization, mastication, and oral transit affecting their ability to eat and swallow.
They also experience a motor loss that disrupts airway closure and pharyngeal movement affecting their ability to initiate the swallowing process. Sensory and motor damage eventually leads to difficulty in aspiration, silent aspiration, bronchiectasis, dehydration, weight loss, and starvation (Easterling & Robbins, 2008).
Dysphagia is very common among individuals with dementia and is defined as difficulty moving food from mouth to stomach (Easterling & Robbins, 2008). Intellectual impairment is the primary cause of dysphagia in people who have dementia (Tristani, 2015).
Dysphagia impairments during the dementia stages of the disease manifested in the following manner, Initially, the individual experienced delayed pharyngeal swallow and reduced lingual movement, at the mid-stage, they experienced reduced oral preparation, pharyngeal clearance, UES opening, and aspiration, and at the advanced stage, they experienced increased aspiration pneumonia which is a common cause of death (Easterling & Robbins, 2008; Alagiakrishnan et al., 2013; Brooke & Ojo, 2015).
Dysphagia treatment options include diet modifications, positioning, feeding techniques, feeding tubes, and oral care (Easterling & Robbins, 2008).
However, the decision regarding the course of treatment depends on the symptoms of eating and drinking difficulties. The speech and language therapist responsible for evaluating swallowing difficulties and recommendations regarding diet safety; recommends the best and suitable treatment option for each case (Vitale et al., 2011; Alagiakrishnan et al., 2013).
Individuals who have dementia cannot take care of their daily needs, which renders them incapable of taking adequate nutrition and hydration and leads to minimal to non-existent social interaction that accompanies mealtime. They also fail to recognize food and lose the normal physiological drivers of appetite.
They may experience apraxia that is difficult in coordinating movements, which will affect their ability to use cutlery. Furthermore, they develop physical difficulties with the act of swallowing, such as failing to manage the food bolus once it’s in the mouth (oral phase dysphagia) or aspirates when swallowing (pharyngeal phase dysphagia).
An enteral feeding tube, which uses tubes to deliver artificial nutrition and hydration, is often recommended to individuals with dementia who have significant dysphagia or have difficulty meeting their nutritional needs by mouth (Easterling & Robbins ,2008; Candy et al., 2009; Vitale et al., 2011).
This research aims to study the impact of enteral tube feeding on an individual's quality of life suffering from dementia. To this end, a phenomenological research design will be collected to collect the primary data.
In addition to this, previously conducted studies will also be used in the form of secondary data. Further details about the collection of data and the research design will be discussed in this proposal's methodology section.
Hence, this study's primary aim is to explore the impact of tube feeding on the quality of life of individuals with dementia and eating problems from their caregivers’ views. Based on this main aim, the research objectives are:
● To determine how the patient fares in terms of health after the tube feeding.
● To determine whether the patient’s quality of life (QOL) improves or not.
Based on the aforementioned aims, the following research questions are derived which will help achieve the primary objective of this study:
1. How does tube feeding impact the quality of life of individuals with dementia and eating problems?
2. How can these impacts be categorized from the caregivers’ view?
By exploring their challenges and difficulties with the feeding tube, this study will help increase the caregivers’ knowledge and their awareness and understanding regarding tube feeding usage outcomes among individuals with dementia to ultimately provide better end-of-life care for a patient who has dementia.
More evidence on how this intervention impacts QOL would give context to this population's ethical decision-making and consider if life in advanced dementia should be prolonged artificially.
Tubes feeding is often used to deliver artificial nutrition and hydration to patients with significant dysphagia or difficulties meeting their nutritional needs by mouth, such as individuals with stroke, head injuries, neurological diseases, and individuals with dementia.
Dysphagia among the dementia population leads to malnutrition, dehydration, weight loss, functional decline, and decreased quality of life. The primary rationale of using it is to improve their nutritional status and QOL and prevent aspiration pneumonia (Candy, 2009; Vitale et al., 2011; Alagiakrishnan et al., 2013; Brooke & Ojo, 2015).
The common types of feeding tubes often used with dementia include nasogastric tube (NGT) and percutaneous endoscopic gastrostomy (PEG) tube. The NGT is a tube that passes through the nose and esophagus until it reaches the stomach.
It is usually used in temporary and short-term feeding needs. In contrast, the PEG tube is a feeding tube passed through an endoscopic into the stomach and guided out through a permanent incision in the abdominal wall and considered for long-term use (Easterling & Robbins, 2008; Candy et al., 2009).
The risks of tube feeding among individuals with dementia have been well documented in the literature, including aspiration pneumonia, esophageal perforation, hemorrhage, death, pressure sores, infections, fluid overload, and loss of social aspects of feeding. Some studies argue that it may increase gastric secretions (Candy et al., 2009; Brooke & Ojo, 2015).
The prevalence of dementia is predicted to rise worldwide, with an estimated 81 million people diagnosed with dementia by 2040 (Brooke & Ojo, 2015). The pervasiveness of swallowing difficulties in individuals with dementia ranges from 13 to 57% in different types of dementia.
The prevalence of tube feeding in individuals with dementia is common in nursing home residents with advanced dementia, and the majority of tubes are inserted during an acute setting, with the most common cause being aspiration pneumonia and dysphagia (Alagiakrishnan et al., 2013).
A recent systematic review conducted by Brooke & Ojo (2015) revealed that the prevalence of tube feeding among individuals with dementia in Japan might be higher than in Western populations due to current guidelines.
In Japan, guidelines compiled under the Japan Gastroenterology Endoscopy Society's supervision recommend PEG insertion for patients who are unable to maintain their nutrition due to cerebrovascular disease or dementia.
The impact of these guidelines may contribute to earlier insertion of PEG tubes and the commencement of enteral nutrition in patients with dementia, ultimately leading to longer survival rates.
Multiple studies outline the outcomes of tube feeding among the dementia population. Several studies report that aspiration pneumonia may be caused by reflux of tube feeding fluid and aspiration of oral secretions.
In a systematic review conducted in 2009, two studies reported that at 6 months, 58% of enteral fed patients had aspiration pneumonia, 54% of those with NG feeding, and 67% with PEG, compared with 17% of those fed orally. However, in a recent review conducted in 2015, one observational study reports aspiration pneumonia at 5%, which was comparable for patients with and without dementia.
Moreover, it illustrated that enteral nutrition delivered through a PEG tube does not increase the risk of aspiration for patients with dementia than rates of aspiration pneumonia of other disease cohorts (Candy et al.,2009; Alagiakrishnan et al., 2013; Brooke & Ojo, 2015).
Alagiakrishnan et al. (2013) highlight that an observational study conducted in nursing homes with severe dementia found no difference in survival with feeding tube placement.
Another recent systematic review conducted by Brooke & Oji (2015) came out with consistent results, indicating six studies evaluating mortality that found that there is no evidence of prolonged life as a result of feeding tube use for individuals with dementia and no significant association between decreased mortality and enteral tube feeding. Some studies also argue that there may even be a slightly higher death rate when using tube feeding for this population and reduced QOL.
Furthermore, no study indicates that QOL was measured. However, one reported that over a 6 months’ period, 71% of 52 patients needed to be physically restrained to prevent extubation, compared with 55% of those who were not enterally fed (Vitale et al., 2011; Alagiakrishnan et al., 2013; Brooke & Ojo, 2015).
The decision to start enteral tube feeding in someone with dementia is argumentative, emotive, and ethically challenging for all involved. The decision is influenced by various complex issues such as clinical needs, local practices, physician and caregiver preferences, and whether an advanced care plan is in place.
The previously conducted studies point out that to date, the decision making regarding enteral nutrition in individuals with dementia remains ethically challenging and concerns whether informal caregivers who give consent are fully informed, both of the benefits and potential harms of this intervention, and of alternatives that might optimize QOL of the patient (Candy et al., 2009; Vitale et al., 2011; Brook & Ojo, 2015). The patient's caregivers must be informed of all implications of tube feeding to help them make an informed decision.
Despite the issues regarding the utility of enteral tube feeding among dementia populations, it remains a common intervention regardless of the evidence suggesting that intervention is ineffective in preventing aspiration, prolonging life, improving nutrition and quality of life (QOL). According to Brook & Ojo (2015), with the expected increase in patients with dementia, enteral tube feeding is likely to become common.
Among the studies and reviews that evaluated the role of enteral feeding in individuals with dementia, no data was found about the patient’s quality of life. Some studies report that the QOL is difficult to analyze in this population as patients with advanced dementia lose their capacity to express their feelings, and family members often report conflicting opinions.
Also, some studies emphasize that further research on how this intervention impact QOL among the dementia population would give more context to the ethical consideration, and Alzheimer’s Society supports the importance of QOL rather the longevity (Candy et al., 2009; Vitale et al., 2011; Alagiakrishnan et al., 2013; Brooke & Ojo, 2015).
The study will explore a patient's living experience with tube feeding from their caregivers’ view generating a range of insightful knowledge about the impact of complications regarding tube feeding on the patient’s QOL. Since these experiences are very personal, discovering their small details would be best investigated by a phenomenological research design (Grbich, 2013). The phenomenology approach is designed to explore individuals’ experiences in depth.
As the intention is to gather detailed information about patients’ experiences during their journey while receiving artificial nutrition via tube feeding, a depth semi-structured interview method is a suitable tool to utilize.
Since it is a flexible and adaptable method, it will provide the researcher with an opportunity to listen to the participants’ views and experiences and allow probing questions to explore further ideas (Harding, 2013). Face-to-face interviews are suitable methods to facilitate honest, open responses, gain new insights and maintain privacy with the patients (Creswell, 2014).
As the research intends to explore the essence of patients’ experiences in-depth through their thoughts, opinions, and experiences about the impact of tube feeding on their life, the interview will take time; hence, smaller size of participants is appropriate. The few participants will provide access to an exciting hypothesis from a high level of information power, which will be critical to achieving the research aim.
Purposive sampling in recruiting the study’s participants will be chosen. This will facilitate obtaining an in-depth understanding of the impact of tube feeding on a patient's QOL. Participants will be selected purposively to provide the most information elaborated in detail by the researcher (Patton, 2015).
The study will attempt to collect data from the caregiver of the patient who has dementia in a particular hospital and nursing home in the UK, specifically those diagnosed with dementia and who have received artificial nutrition via NGT or PEG.
To identify suitable participants for the study, an internet search and telephonic inquiry to the dementia care services at hospitals and nursing homes in the UK will be carried out. In addition to this, approval from the registry of the dementia department from a specific hospital in the UK will be requested to recruit participants.
The sample population for this study will have the attributes listed below:
● Male and female
● Caregiver for the patient diagnosed with dementia
● The caregiver should have spent a long time with the patient.nt
● Acute hospital settings and nursing homes
● Patients ranged from 60+ years
● At any stages of the disease
● Experience eating difficulties and have been recommended eternal tube feeding
This section analyses the primary and the secondary data collected from the literature sources and the interviews conducted, respectively. An effort will be made to ensure coherence between the sections of the paper.
Thematic analysis, the “process of segmentation, categorization, and relinking of aspects of the data before final interpretation” (Matthews and Ross 2010:373), will be utilized in analyzing the collected data.
This analysis facilitates working with the collected raw data, such as the raw verbal or visual data. The thematic analysis is flexible, which helps divide the data into chunks before working with it and returning to raw data throughout the analytical process (Matthews & Ross, 2010). Also, the thematic analysis will help explore and better understand the comments made by the participants.
To ensure the credibility of the study, numerous steps will be taken. These steps include:
● A verbatim transcript of the interviews
● Read the transcripts and then read back to immerse yourself in the data and accurately reflect what was said by the participant.
● Use member checking to ensure the truth value of the data.
● Provide the participants with a copy of the transcript to validate that it reflected their perspective.
● Considering reflexivity, that is, being aware of the researcher’s effect on the research process and outcomes.
The moral and ethical code conducts the paper. However, there is always a possibility that ethical issues may arise. The ethical issues that might arise in conducting this research are:
● Gaining the agreement of individuals in authority (e.g., gatekeeper) provides access to study participants at research sites.
● Participation will be voluntary, and it will be stressed that the consent could be withdrawn during the course of the study.
● Anonymity and confidentiality issues anticipate that some patients may want to have their identity remain confidential. By permitting this, the researcher allows the participants to retain ownership of their voices. The consequence of this would mean that the data regarding the particular patient will be excluded in the final report.
● Since a face-to-face interview method is used while conducting this study, the interaction may be stressful for the participants due to the topic's sensitivity.
● Emotional reactions in the interview.
● Psychological risk such as distress.
● The researcher–participant relationship can raise a range of ethical concerns such as respect for privacy, the establishment of honest and open interactions, and avoidance of misrepresentations.
Every study conducted encounters some limitations. Researching within a time frame often proves to be the hardest challenge. Even though using literature resources can be helpful, it may be classified as a hindrance since the studies have been conducted over different time periods.
This section of the study will summarize and comprehensively interpret the analyzed data's findings and answer the research questions satisfactorily.