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Tube Feeding in Individuals with Advanced Dementia: A Review of Its Burdens and Perceived Benefits

Tube Feeding in Individuals with Advanced Dementia: A Review of Its Burdens and Perceived Benefits Hindawi Journal of Aging Research Volume 2019, Article ID 7272067, 16 pages https://doi.org/10.1155/2019/7272067 Review Article Tube Feeding in Individuals with Advanced Dementia: A Review of Its Burdens and Perceived Benefits 1 2 Ezekiel Oluwasayo Ijaopo and Ruth Oluwasolape Ijaopo East Kent Hospital University Foundation Trust, William Harvey Hospital, Ashford, Kent TN24 0LZ, UK Royal Stoke University Hospital, Community Haywood Hospital, Stoke-on-Trent ST6 7AG, UK Correspondence should be addressed to Ezekiel Oluwasayo Ijaopo; eijaopo@yahoo.com Received 22 April 2019; Accepted 6 September 2019; Published 19 December 2019 Academic Editor: F. R. Ferraro Copyright © 2019 Ezekiel Oluwasayo Ijaopo and Ruth Oluwasolape Ijaopo. *is is an open access article distributed under the Creative CommonsAttribution License, which permits unrestricteduse, distribution, and reproduction inany medium, provided the original work is properly cited. Background. Dementia remains a growing concern for societies globally, particularly as people now live longer. About 90% of individuals with advanced dementia suffer from eating problems that lead to general health decline and ultimately impacts upon the physical, psychological, and economic wellbeing of the individuals, caregivers, and the wider society. Objective. To evaluate the burdens and perceived benefits of tube feeding in individuals with advanced dementia. Design. Narrative review. Methods. Computerized databases, including PubMed, Embase, Medline, CINAHL, PsycInfo, and Google Scholar were searched from 2000 to 2019 to identify research papers, originally written in or translated into English language, which investigated oral versus tube feeding outcome in individuals with advanced dementia. Results. Over 400 articles were re- trieved. After quality assessment and careful review of the identified articles, only those that met the inclusion criteria were included for review. Conclusion. Tube feeding neither stops dementia disease progression nor prevents imminent death. Each decision for feeding tube placement in individuals with advanced dementia should be made on a case-by-case basis and involve a multidisciplinary team comprising experienced physicians, nurses, family surrogates, and the relevant allied health professionals. Careful considerations of the benefit-harm ratio should be discussed and checked with surrogate families if they would be consistent with the wishes of the demented person. Further research is required to establish whether tube feeding of individuals with advanced dementia provides more burdens than benefits or vice-versa and evaluate the impacts on quality of life and survival. Advanced dementia can be described as a state of 1. Background worsening mental and physical capabilities decline in per- Dementia remains a public health priority and a growing sons with dementia, thereby resulting in dependency in concern for societies globally, particularly as the number of (basic) daily personal care needs, such as dressing and people suffering from dementia is increasing [1]. Currently, eating, and cause severe limitations in verbal communica- 50 million people in the world have dementia, and these tion [4–6]. Studies show that nearly 90% of people with people are estimated to triple to over 150 million by 2050 [2]. advanced dementia have eating problems [7] which increase In every three second, someone in the world develops de- the risk for weight loss, malnutrition, and general health mentia, thus leading to 9.9 million new cases of dementia decline [8–11]. Dementia causes physical, psychological, and annually [3]. Alzheimer’s disease, which is the commonest economic impacts upon the individuals, caregivers, and the form of dementia, has become the most feared disease in the society at large [12]. It is estimated that almost 82 billion United States ahead of cancer. It kills a lot more people in the hours of informal care are provided annually for people with US than breast and prostate cancer combined and also dementia worldwide [2], and the huge economic impact is currently accounts for the most common cause of death in currently evaluated worldwide to cost one trillion dollars England and Wales [2]. [13]. 2 Journal of Aging Research *e rates of feeding tube placement in advanced de- 2. Methods mentia individuals vary across different countries. For in- Computerized databases, including PubMed, Embase, stance, in the United States, a cross-sectional study involving Medline, CINAHL, PsycInfo, and Google Scholar were 186,835 nursing home residents with advanced cognitive searched from 2000 to 2019 to identify scientific research impairment reports that 34% of residents with advanced papers, originally written in or translated into English dementia in the nursing home had feeding tubes [14]. language. Broad search (MeSH) terms used were “enteral Tube feeding is an alternative feeding method for feeding in dementia,” “tube feeding in dementia,” “artificial people with unsafe swallowing and hence cannot attain nutrition in dementia,” “burdens of tube feeding in de- sufficient oral intake to maintain their body energy re- mentia,” “benefits of enteral feeding in dementia,” and quirements [15]. According to the American Society for “percutaneous endoscopic gastrostomy tube feeding in de- Parenteral and Enteral Nutrition, tube feeding is defined as mentia.” Over 400 articles were retrieved. Only studies that an “enteral nutrition provided through a tube, catheter, or investigated the burdens and/or benefits of tube feeding stoma that delivers nutrients distal to the oral cavity” [16]. versus oral feeding in individuals with advanced dementia *e commonly used feeding tubes are the nasogastric (NG) were selected for review. Other studies on tube feeding that and gastrostomy tubes which include percutaneous included dementia subjects among other medical conditions endoscopic gastrostomy (PEG) tube (considered the gold were also assessed, particularly if data for the dementia standard) and radiologically inserted gastrostomy (RIG) subjects were provided in the studies. Citations from all the tube [17]. relevant studies were also reviewed to obtain additional Discussing feeding options with family surrogates is publications. Data synthesis and conclusions for this study often complex and emotive, raising not only clinical issues came from available evidence obtained from the studies but also ethical ones for the healthcare practitioners [18–20]. reviewed. Similarly, the religious beliefs, cultural background, and ethnicity of families often play significant roles in the sur- rogates’ discussion with healthcare providers [21]. Some 3. Burdens of Tube Feeding in People with family caregivers may have the impression of being in- Advanced Dementia directly contributing to their loved one’s starving when they fail to support enteral feeding for their loved ones with When an individual with advanced dementia experiences dementia. difficulty with eating or persistently refuses foods and their While several professional societies and experts have advanced wishes are unknown, surrogate families are often recommended careful hand feeding as the standard/ceiling faced with making decision regarding what option of feeding of care for all individuals with advanced dementia who route is best appropriate for maintaining nutritional status experience difficulty with oral intake [5, 22–24], other ex- and survival. Should placement of a feeding tube or a careful perts have argued in support of feeding tube placement hand feeding be considered as the ceiling of care? Mitchell [25–29]. Quite justifiably, the debate continues as there has et al. claimed feeding tube insertion rates among people with not been any randomised controlled trial done to compare late-stage dementia in the US nursing home from 2000 to the benefits and burdens of tube feeding interventions with 2014 declined from nearly 12% to 6%, respectively [34]. oral feeding in people with advanced dementia due to ethical While it is true there are declining trends in the placement of concerns. *e guidelines and recommendations from some feeding tubes in advanced dementia, the practice still con- professional societies which discourage feeding tube tinues [35, 36]. placement in severe dementia patients are based only upon *e American Geriatrics Society [22] position statement the available evidence from existing observational studies insists that careful hand feeding is almost as good as tube and some experts’ opinions [22, 30]. feeding for the outcomes of comfort, aspiration pneumonia, However, healthcare practitioners are faced with dis- functional status, and death while, at the same time, avoiding cussing this complex and challenging issue almost on a the burdens and complications associated with tube feeding. regular basis with the surrogate families and caregivers. Some studies [37–39] also report that involving dieticians to Unfortunately, recent studies also show persistent knowl- prescribe dietary supplements in addition to the regular diets edge gap among healthcare professionals regarding tube have proven to be effective in maintaining nutritional status feeding of patients with advanced dementia [31]. *e lack of in elderly people with advanced dementia. appropriate evidence-based knowledge about tube feeding A prospective study that compared clinical course and results in providing second-rated information to patient’s outcomes of 88 elderly demented patients with disabilities families [32, 33]. *is study explores the databases for via their feeding mode found that tube feeding showed no studies conducted in the last two decades to review the beneficial effect on nutritional outcomes and failed to current knowledge on tube feeding of individuals with promote the healing of pre-existing pressure sores compared advanced dementia and discusses its burdens and perceived with oral feeding [40]. Similarly, a recent retrospective benefits. It also provides opportunity for increasing analysis of 392 patients claimed PEG insertion in patients knowledge and awareness for healthcare professionals and with dementia failed to improve the nutritional status, rates the public, particularly the family caregivers involved in of hospital readmission, or the short- and long-term survival caring for individuals with advanced dementia at homes or when compared with PEG feeding among patients with health institutions. other medical conditions such as stroke, motor neurone Journal of Aging Research 3 [49, 50]. *e occurrence of aspiration pneumonia, which disease, and oropharyngeal cancers [41]. *is latter study reinforces the outcome of an earlier systematic review of may occur even when there is no clear evidence of vomiting, can be potentially life-threatening [51]. A prospective ob- seven observational studies which declared there is in- sufficient evidence to conclude that tube feeding of in- servational study that assessed aspiration pneumonia in- dividuals with advanced dementia is effective in improving cidence in advanced dementia patients receiving enteral survival, quality of life, or nutritional status and neither feeding reported that aspiration pneumonia occurred almost helps in promoting the healing of pressure sores [42]. twice as frequently in individuals who received tube feeding *e nonsuperiority of tube feeding over oral feeding is compared with those who received oral feeding [48]. supported further in a recent study that evaluated the Also, many long-term care facilities have a common knowledge and perceptions of 168 physicians about PEG practice of stopping oral feeding/care of residents with feeding in advanced dementia individuals. *e authors re- advanced dementia soon after they are established on tube feeding [52]. As a result, tube-fed dementia patients have port that 71% of the physicians believed careful hand feeding is almost as good as tube feeding for the outcome of comfort, high tendency to suffer from the neglect of their oral health hygiene, thus leading to the colonisation of their oropharynx and nearly half (49%) of them believed nutritional status rarely improves with tube feeding [43]. Comparatively, the by pathogenic microorganisms which subsequently increase general consensus among gastroenterologists in the USA is the risk of oral diseases and aspiration pneumonia [21, 53]. A that PEG placement is not beneficial for patients with ad- study involving frail elderly patients who received tube vanced dementia [44]. In fact, one study finds that nearly feeding in nursing and skilled nursing facilities compared 20% of the tube-fed advanced dementia residents in the with those fed orally reports high prevalence of Gram- nursing home had their feeding tubes either replaced or negative bacteria (Pseudomonas aeruginosa, Klebsiella, and Proteus) isolations in the tube-fed group compared with the repositioned during the 2 years of prospective follow-up, thereby resulting in more frequent visits to the emergency patients’ group that had oral feeding. *e authors report 81% of patients fed via an NG tube, and 51% of patients fed via department. Worse still, nearly one-third (30%) of the de- mented residents who had their feeding tubes replaced PEG as against 17.5% of patients who received oral feeding had Gram-negative bacteria cultured from their oropharynx needed at least two replacements, and the median survival time after a repositioning or replacement was 54 days [45]. [54]. *e presence of these pathogenic Gram-negative bacteria in the oropharyngeal secretions obviously increases the risk for aspiration pneumonia [55]. 3.1. Survival Burden. An 8 year (1999–2007) prospective study of 36,492 nursing home residents with advanced 3.3. Pressure Sores Burden. It is arguable whether tube dementia and new eating problems that investigated whether individuals receiving PEG feeding had better sur- feeding helps to prevent the development of new pressure vival compared with those without PEG found that PEG sores or promotes the healing of the pre-existing pressure feeding, regardless of the timing of insertion, does not ulcers. A study by Arinzon et al. [56] reports that while tube improve survival [46]. Another 18-month follow-up study feeding of very dependent and demented elderly in long- that analyzed survival in older adults with dementia and term care lead to improvements in blood count, renal eating problems, by comparing PEG-fed patients with those function, electrolytes, and hydration status, it does not provide any benefit in preventing pressure sore development who were hand-fed, reported that survival was shorter in the PEG-fed group compared with the group that was fed orally. in the patients [56]. Another cohort study conducted using Minimum Data Set (MDS), obtained from national storage *e authors further state that PEG feeding was associated with notable earlier mortality even after adjustment for likely of demographic and clinical information of nursing home residents living in US-certified Medicare or Medicaid fa- confounders such as age, dementia type, and staging [47]. Besides PEG tubes, feeding people with late-stage de- cilities, compared the records of residents with advanced mentia via an NG tube neither increases survival nor reduces cognitive impairments receiving tube feeding with those aspiration pneumonia risk. Studies show that demented without PEG feeding. *e study analysis showed that resi- patients who receive NG feeding have much higher risk of dents with PEG feeding were more than twice likely to death compared with those receiving oral feeding [48]. *e develop a new pressure ulcer. In the similar manner, mortality rate for tube-fed demented patients rose from established pressure ulcers were less likely to heal or show improvement in advanced cognitively impaired residents 41.9% at 3 months to 58% at 6 months compared with those who had oral feeding, which rose from 11% to 28% at 3 and 6 who had PEG feeding compared with those without PEG feeding [46]. However, it is important to emphasize that the months, respectively [48]. latter report should be used with caution as several experts have issued clear warning that using administrative data 3.2. Aspiration Pneumonia Burden. *e concern that a de- alone for research evidence do not provide the true reflection mented person who experiences repeated choking during of outcome, particularly as the reported figures often have meals has a high risk of developing aspiration pneumonia is bias of overdocumentation [57]. among the most common indications for inserting feeding tube in the first place. Ironically, aspiration pneumonia remains a significant complication of tube feeding and 3.4. Refeeding Syndrome Burden. Refeeding syndrome is frequently accounts for the cause of death after tube feeding another potentially life-threatening complication that may 4 Journal of Aging Research such as abdominal discomfort, diarrhoea, and constipation occur in individuals receiving artificial nutritional support via feeding tubes or parenteral nutrition, after a period of which can contribute to the discomfort experienced by the demented individuals [49–51]. *e diarrhoea problem is a starvation [58, 59]. *e burdens arising from refeeding syndrome are characterised by severe electrolyte imbalance major concern and accounts for the most common gas- and fluid retention that may cause various organs and trointestinal side effect in patients receiving tube feeding. Its systems failure, thus contributing to worsening morbidity causes are multifactorial and may occur in a wide range (2% and high risk of death [25, 58, 60]. to 95%) of patients receiving tube feeding [68, 69]. Also, fluid overload complication resulting in pulmonary oedema and swelling of extremities is another trouble that can occur from 3.5. Costs Burden. One observational study found the daily tube feeding [50]. A survey study of home healthcare nurses costs of hand-feeding individuals with advanced dementia in in United States that explored their perceptions regarding nursing home were higher compared with residents re- suffering, artificial nutrition, and hydration in advanced ceiving tube feeding ($4219 vs. $2379). But, the total costs dementia reports that artificial nutrition and hydration billed to Medicare were greater for the tube-fed residents prolonged patients’ suffering due to burden of the pro- ($6994 vs. $959) due to the high costs associated with the cedure, the need for restraints, and increase chances of placement of feeding tubes and hospital admissions with or developing fluid overload complications [70]. Other studies without the management of likely complications in the also report significant higher risk of in-hospital mortality emergency department [61]. *e Medicare costs for in- after PEG placement [71–73]. A 30-day mortality risk in patient care among nursing home residents with late-stage tube-fed individuals with advanced dementia may vary from dementia showed that one-year hospital costs were $2224 as high as 20% to 40% [43, 74]. more expensive in nursing home residents with feeding It is established that the majority (nearly 75%) of nursing tubes than those without tube feeding [62]. More so, nursing home dementia residents receiving tube feeding had their home residents with advanced dementia receiving tube feeding tube inserted during an acute hospital admission feeding have higher odds of spending more time in intensive [45, 75]. Among the factors that often pressured physicians care units and tend to acquire more healthcare costs for to agreeing to feeding tube placement include lack of treating associated complications related to feeding tube awareness of appropriate evidence-based knowledge on tube placement [62]. Whether or not the cost burden issue feeding; cultural values and clinical practice that encourage provides a valid point to discourage feeding tube placement family-oriented end-of-life decision-making; fear of litiga- in advanced dementia patients is another controversial tion from possibly disallowing treatment that is potentially topic, particularly as healthcare systems operate differently life-sustaining; emotional uneasiness to allow death by across the regions of the world. For instance, in countries “starvation;” and the remuneration factors associated with where the healthcare finance budgets are limited or where the choice of PEG [50, 76]. More so, a recent evidence from individuals or third-party have to pay medical bills, multicentre study involving three tertiary and four com- healthcare cost-benefit analysis may play significant role in munity hospitals in New York that explore the opinion of decision-making, especially where feeding tube insertion is physicians on PEG feeding in late-stage dementia shows that deemed questionable to benefit the individual with severe 63% of physicians claimed that families and surrogate de- dementia. cision-makers insisted on PEG placement even when the physician would not approve of it [43]. 3.6. Other Burdens and Complications. It is not unusual to Besides the dementia disease progression, correctable see family members feeling unease and express concerns that causes of poor oral intake in patients with advanced de- their demented loved ones are too frail or too old to undergo mentia may include the following: oral health-related surgical procedure/operation for feeding tube placement problems [13]; over sedation or loss of appetite from pol- ypharmacy or side effects of drugs [77, 78]; infections (such [63]. *ey may see it as causing unnecessary suffering and burden for the demented individuals. Also, there is serious as respiratory or urinary tract); comorbid medical condi- tions; constipation; depression or anxiety; and distress from worry of possible needs to use physical restraints and sed- ative drugs to prevent patient from pulling out feeding tube other neuropsychiatric symptoms of dementia [5]. In ad- dition, environmental stressors such as lighting, loud noise, due to dementia-related agitation and lack of cognition [50, 64]. Studies have shown that nearly two-thirds of extreme temperature, colours, and crowding are among nursing home residents get agitated and pull their feeding other things that could cause irritations and discomfort, thus tubes within the first two weeks of insertion [65]. Also, there altering oral intake in severe dementia patients [79]. is disconcertment that PEG-fed demented individuals are *erefore, older adults with advanced dementia presenting going to be deprived the pleasure of eating as well as the with eating problems should undergo proper evaluation to natural human interactions that come with oral feeding [64]. rule out these treatable conditions as the cause of the poor oral intake [5]. Other burdens that are directly related to the PEG placement may include concerns about peristomal wound leakage, infection risk, tube leaks or blockage, local pain and 3.7. Burdens Relating to End of Life. It is important to em- bleeding, colonic fistulae, as well as sepsis from abdominal abscess and potential death [51, 66, 67]. Several formulations phasize at this point that individuals with advanced de- mentia may decline to eat or drink as they approach end-of- of the enteral feeds may cause gastrointestinal symptoms Journal of Aging Research 5 these caregivers to have high expectations of benefit from life period. Refusing food and fluid is a normal part of the natural dying process, particularly as the body slowly shuts feeding tube placement and view its intervention as a rep- resentation of high-quality care to address the feeding down. Simple strategies that promote comfort by relieving dry mouth through oral care delivered by well-trained staff, problems [50]. One study that assessed the surrogates’ ex- as well as hand feeding as tolerated should be the main focus pectations of benefit from feeding tube placement found that of care in these individuals [13, 22, 23, 64, 80]. Family 79% of surrogates believed tube feeding would improve surrogates and caregivers should be given adequate coun- patients’ comfort, and 87% of them anticipated better quality selling and properly educated about what constitutes es- of life. More than half (56%) of surrogates also felt tube sential care needs for dying persons so as to help mitigate feeding would provide better independence for patients [97]. their distress and uneasiness at that difficult time. Table 1 Similarly, a recent study that investigated the opinions of provides the summary of studies on the burdens of tube physicians and nurses about artificial nutrition in in- dividuals with advanced dementia report that nearly 80% of feeding in individuals with advanced dementia. physicians supported the administration of artificial nutri- tion when life expectancy is between one month and six 4. Perceived Benefits of Tube Feeding in months, and about 70% of the nurses also supported the idea Advanced Dementia Individuals [98]. In the last two decades, many published studies have Even though there is general consensus that careful hand expressed different views on whether or not the insertion of feeding should be offered to all individuals with advanced feeding tubes in individuals with advanced dementia pro- dementia who experience eating problems, significant vides more harms than benefits or vice-versa concern arises when the demented person persistently re- [25, 27, 40, 81–89]. Obviously, this issue continues to fuses all forms of assisted hand feeding. While eating generate widespread debate among experts in the care of the problems may indicate that advanced dementia has wors- ened and that the individual has entered the final phase of elderly medicine [25, 26, 28]. While it is strongly recommended that no individuals the dementia illness, clinically, this may not necessarily mean that end of life is imminent or that feeding tube including people with advanced dementia should be force- fed, tube feeding provides a safer way of administering foods placement will be futile or harmful to the individual. A and fluids to maintain the nutritional status of people cat- systematic review of 9 studies conducted in 2015 which egorised as having unsafe swallowing [14, 90, 91]. NG tube is evaluated the outcomes of enteral nutrition for people with rarely considered an option in people with late-stage de- advanced dementia claimed no harmful outcomes were mentia due to lack of cognition and intolerance [5, 92]. reported with tube feeding of individuals with advanced Evidence also shows that PEG feeding is associated with a dementia when compared with persons without dementia lower incidence of aspiration when compared with NG tube [27]. feeding [93]. Where NG tube feeding is in place, it is often recommended that its use for feeding should not go beyond 4.1. Aspiration Pneumonia Incidence. A study of elderly 4 weeks due to associated higher risks of tube dislodgement, Japanese patients with dementia who were fed via PEG aspiration pneumonia, and difficulty with diet infusion [94]. showed evidence of reduced incidence of aspiration pneu- Several factors that are independently associated with feeding tube placement in advanced dementia are known to monia with prolonged survival rate of more than two years compared with dementia patients fed via the nasogastric include: younger age, male gender, ethnic minorities, lack of advanced directives, and no DNR (do not resuscitate) order (NG) tube [99]. Another retrospective analysis that evalu- ated 58 severe dementia patients across nine psychiatric [17]. Likewise, the type of dementia and associated comorbidities play significant roles as well. For example, hospitals found that tube feeding helps to decrease the frequency of aspiration pneumonia and use of intravenous nursing home residents with Alzheimer’s dementia and antibiotics and also prolongs median survival times by 23 vascular dementia with a background history of stroke are months compared with dementia patients without tube more likely to have tube feeding, whereas individuals with feeding who had median survival times of two months [100]. comorbidity of cancer are less likely to have tube feeding *e benefit of tube feeding in reducing aspiration pneu- [17]. monia occurrence is further reinforced by recent survey of Dementia illness is overwhelming not just for the af- fected individuals, but also their family and caregivers. Quite doctors’ knowledge and attitudes about tube feeding in late- stage dementia. *e survey reveals that 61.7% of the doctors often, family caregivers experience tension and anxiety around mealtimes [95]. Unfortunately, the mealtime period claimed tube feeding prevents aspiration and more than half (51.7%) of the participants believed tube feeding prevents become unnecessarily prolonged and distressing for the family caregivers as great deal of time, effort, technique, and pneumonia [101]. *e latter findings bolster the result of an earlier survey involving 195 primary care physicians in the patience spent in providing assistance with hand feeding United States that claimed PEG feeding of individuals with may produce almost zero success [25, 96]. Consequently, advanced dementia provides a range of benefits; 76% of the these family caregivers become worried that their loved ones physicians agreed that PEG feeding reduce aspiration may be starving to death from poor oral intake due to pneumonia and 61% of them believed it prolongs survival difficulty in coping with the challenges of food refusal by [74]. their demented relatives. It is therefore, not uncommon for 6 Journal of Aging Research Table 1: Summary of studies on the burdens of tube feeding in individuals with advanced dementia. Article Participants Study design (follow-up) Aim/objective Outcome/conclusion Tube feeding showed no beneficial effects on nutritional outcome in elderly patients with advanced dementia and does Compared the clinical course not aid the healing of pre- and outcome of elderly existing pressure sores as Jaul et al. 88 patients (26 fed orally; 62 Prospective survey study (17 demented patients with compared with oral feeding. [40] fed via NG tube) months) severe disabilities via feeding *e mean number of pressure mode ulcers in the tube and orally fed groups at the start to end of study were 1.05 to 0.97 vs. 2.28 to 1.92 (P � 0.05to0.03), respectively PEG insertion did not reduce rehospitalisation rate at 6 months postprocedure in dementia patients compared with patients who had PEG Compared rehospitalisation for other condition (OR: 2.45 and mortality rates after PEG in the dementia group, 1.86 placement in dementia in the stroke group, and 1.65 Ayman Retrospective analysis (48 patients (165) versus stroke in patients with 392 patients et al. [41] months) patients (124) and other oropharyngeal cancers and patients’ group with head and motor neuron disease; neck cancers and motor P<0.05); also, mortality was neuron disease (103) higher in the dementia group (75%) within the first year after PEG placement compared with the stroke group (58%) and group C (38%) (P<0.001) 81% and 85% of physicians believed PEG placement does not increase survival nor reduce aspiration Evaluated physicians’ pneumonia, respectively; 71% knowledge and perceptions Gieniusz 168 internal medicine Multicentre mixed-mode and 61% of physicians regarding PEG placement in et al. [43] physicians survey (none) claimed careful hand-feeding individuals with advanced of advanced dementia people dementia are nearly as good as tube feeding for the outcomes of comfort and functional status, respectively Feeding tubes placement was associated with poor survival. 19.3% of residents who had feeding tube placement Assessed the natural history needed tube replacement or of feeding tube insertion in 97,111 nursing home (NH) Secondary analysis of repositioning within 145 days Kuo et al. NH residents who followed- residents (5,209 had PEG; minimum data set (MDS) after insertion, and the [45] up for 2 years to measure 91,902 had no PEG) (2 years) median survival was 54 days their health care use and after replacement; also, one- survival year mortality after feeding tube insertion was 64.1% with a median survival of 56 days after insertion Journal of Aging Research 7 Table 1: Continued. Article Participants Study design (follow-up) Aim/objective Outcome/conclusion NH residents who received Assessed benefits and risks of PEG feeding were 2.27 times PEG feeding in the at higher risks of developing Teno et al. 4421 patients (1585 PEG-fed Propensity-matched cohort prevention and healing of a new pressure sores (95% CI [46] and 2836 Non-PEG-fed) study (1 year). pressure ulcer in NH 1.95–2.65) and had less odds residents with advanced of having their established cognitive impairment (ACI) pressure ulcer heal (OR 0.70, 95% CI 0.55–0.89) At the follow-up, after adjustment for possible cofounders, mortality was higher in PEG-fed patients Compared survival rates and than orally fed patients, 70% hospital readmissions in vs. 40%, respectively Ticinesi Prospective observational 184 patients elderly demented patients (P � 0.0002); however, et al. [47] study (18 months) who were PEG-fed versus hospital readmission rates those orally fed during follow-up were insignificantly different in both groups (40% (PEG-fed) vs. 38% (orally fed), age- and sex- adjusted P � 0.88) No significant difference in number of hospital admissions in both groups (p � 0.365); however, the incidence of aspiration pneumonia is twice as high in Compared hospital the alternative feeding group admissions, survival rates, (RR: 2.32; 95% CI 1.22–4.40) and aspiration pneumonia Prospective nonrandomised Mortality at 3 months was Cintra incidence in dysphagic 67 patients observational study (6 11.1% among the oral feeding dementia patients on oral et al. [48] months). group compared with 41.9% feeding versus alternative among the alternative feeding (mostly NG tubes) feeding group (RR: 3.77; 95% CI route 1.35–10.39) At 6 months, mortality was 27.8% in the oral feeding group versus 58.1% among the alternative feeding group (RR: 2.09; 95% CI 1.14–3.83) Tube feeding is correlated with pathogenic organisms’ colonisation of the oropharynx; Gram-negative Compared the pathogenic bacteria were isolated in 81% oral floral colonisation risk in of patients fed via the NG Leibovitz Cross-sectional comparative tube-fed elderly patients tube and from 51% of the 215 patients et al. [54] study (not clear) (n �135) with their orally fed PEG-fed patients as against counterparts (n �80) in 17.5% in the orally-fed skilled nursing facilities patients (P<0.0001); no correlation was found between the duration of tube feeding and bacterial isolations 8 Journal of Aging Research Table 1: Continued. Article Participants Study design (follow-up) Aim/objective Outcome/conclusion Although the tube-fed group had improvements in blood count, renal function, and electrolyte and hydration Evaluated the effectiveness of status, the mortality rate was enteral nutrition in higher in the tube-fed group Arinzon Prospective study (21 months improving survival, 261 patients (42%) than in the control et al. [56] before and after analysis) nutritional, and functional group (27%, P>0.05). Also, status of the very dependent nutrition-related demented elderly patients complications were higher in the tube-fed group than in the orally fed (control) group, 61% and 34%, respectively Even though clinical evidence shows tube feeding does Regarding survival, a study by Shintani compared sur- not prevent the occurrence of aspiration pneumonia, vival periods of advanced cognitively impaired elderly who however, when feeding tube is properly inserted, along with received oral feeding versus PEG feeding. *e author good tube care, and the feeding method is dexterously claimed the survival periods in those who received PEG performed, the risk of vomiting, regurgitation, and aspira- feeding (736±765 days) were nearly as twice as the elderly tion is markedly reduced [53]. who had hand feeding (399±257 days) [108]. Comparably, another recent study by Takayama et al. [109] claims that dementia patients who received tube feeding had longer 4.2. Nutrition and Survival Benefits. Quite commonly, older median survival times of 695 days compared with those adults with advanced dementia suffer from recurrent hos- without tube feeding who had median survival times of 75 pital admissions which cause great concerns for the families. days [109]. Takayama et al. also reported that about 75% of *e recurrent hospitalisations mostly occur from poor oral the dementia patients with tube feeding survived more than intake which results in dehydration and subsequently a year, and nearly 50% of them survived more than two years leading to acute kidney injury (AKI) or acute-on-chronic [109]. renal impairments [102–104]. More so, patients may present While identifying factors that influence survival in older with lethargy, worsening agitation and confusion, and adults with advanced dementia following PEG tube in- systemic deterioration as a result of the electrolyte imbalance sertion, a cohort study reports advanced age and higher from dehydration [105]. baseline serum albumin as strong predictors of mortality and However, one retrospective study that reviews the effec- survival, respectively [110]. Patients with higher serum al- tiveness of PEG feeding for nutritional support in patients with bumin level at baseline and a stable/increased serum al- dementia finds that PEG feeding improves low serum albumin bumin level during follow-up had better survival and and other serum markers of malnutrition, hence preventing improved quality of life one year after PEG tube insertion dehydration, and ultimately resulting in better clinical outcome compared with patients who had lower serum albumin levels [90]. It is therefore not surprising that the earlier study by Shega [110]. Correspondingly, a rise in serum albumin level≥3.0g/ et al. [74] claimed 93.7% of primary physicians believe PEG dL within six months after PEG placement has been found to feeding improves nutritional status in advanced dementia. contribute to survival and essential to having long-term Another prospective-based study that evaluated the global survival [111, 112]. impact of PEG feeding on 60 elderly patients including patients In addition to advanced age and low serum albumin with advanced dementia found significant reduction in the levels, other determinants of poor prognosis in older adults emergency department visits and hospital admissions, partic- with late-stage dementia before or after PEG tube placement ularly in the following 6 months after PEG feeding was started have been reported to include physical dependence and compared with the preceding six months before PEG feeding significant comorbidities such as heart failure, chronic [106]. *e authors further report that PEG feeding improved pulmonary airway disease, diabetes, and malnutrition biochemical markers (haemoglobin, albumin, and total pro- [52, 89, 113–116]. teins) which reflected better nutrition and hydration in the patients [106]. While it is true that tube feeding does not provide cure 4.3. Comparison of Tube Feeding in Advanced Dementia with for the underlying swallowing difficulty in late-stage de- Other Diseases. Individuals who are suffering from ad- mentia, family caregivers and healthcare providers (that vanced/progressive neurological disorders (such as lateral amyotrophic sclerosis, Parkinson’s disease, and stroke) and support tube feeding idea) maintain that PEG feeding helps to mitigate weight loss, sustain nutrition, and reduce the terminal illnesses including cancer, end-stage heart failure, and renal disease have shown demonstrable benefits from suffering that occurs from dehydration or malnutrition [28, 74, 107]. PEG placement for nutritional supports [49, 90, 117–121]. Journal of Aging Research 9 Table 2: Summary of studies on the benefits of tube feeding in individuals with advanced dementia. Article Participants Study design (follow-up) Aim Outcome/conclusion PEG feeding improves low albumin including the serum markers of malnutrition and poor clinical outcome; serum albumin levels (95% CI: 3.3–3.6; P<0.01) and transferrin levels (95% CI: Examined the effectiveness of 182–206; P<0.05) were Nunes et al. Retrospective study (80 PEG feeding for nutritional 46 patients significantly improved after 3 [90] months) support in patients with months of PEG feeding; high dementia albumin, transferrin, and cholesterol levels at admission were positively correlated with survival Mean and median survivals after PEG placement were 21 and 18 months, respectively Survival rates among PEG-fed patients were 27 months higher than those fed via NG Clinical evaluation of elderly tubes (mean (SD): PEG group, Japanese patients with 65.6 (5.6%) versus NG tube Giantin et al. 261 patients (155 PEG-fed; 106 Survey study (6 months dementia who underwent group, 44.4 (9.8%); P � 0.019) [99] NG tube-fed) before and after analysis) PEG feeding versus NG- tube PEG feeding provided feeding evidence of reduced incidence of aspiration pneumonia when compared with NG tube feeding Tube feeding decreased pneumonia and antibiotic use in patients with severe dementia compared with those without tube feeding Tube feeding was associated Evaluated the frequency of with significantly longer Takenoshita 58 patients (46 with tube Retrospective study (60 pneumonia before and after survival (hazard ratio 9.8, 95% et al. [100] feeding and 12 without) months) tube feeding in severe CI 3.6–27.0, p<0.001); dementia patients advanced dementia patients on tube feeding had median survival times of 23 months compared with median survival times of two months among those without tube feeding 10 Journal of Aging Research Table 2: Continued. Article Participants Study design (follow-up) Aim Outcome/conclusion 6-month period after PEG placement showed significant decrease in the mean number of emergency department visits compared with 6months before PEG insertion (1.1 vs. 2.2; P � 0.003) as well as the mean number for hospital admissions (0.3 vs 1.4; 60 patients (26 dementia; 18 Analyzed the global impact of P<0.001). respectively Curdia ´ et al. stroke; 5 head injury; 3 anoxic Prospective study (24 PEG feeding in patients 53.8% of patients with pre- [106] encephalopathy; 2 ALS; 3 other months) followed-up in specialised existing pressure ulcers had conditions) multidisciplinary PEG clinic complete healing after PEG placement at 6-month follow- up PEG feeding improved biochemical markers (such as haemoglobin, albumin, and total proteins) that reflected better nutrition and hydration in the patients Survival periods of the advanced cognitively- Compared survival periods of impaired elderly receiving elderly patients with PEG feeding (736±765days) Shintani Retrospective study (5 neurologic impairments in 80 patients were nearly as twice that of the [108] years) those receiving oral intake, elderly adults having oral PEG feeding or home intake (399±257 days); home parenteral nutrition parenteral nutrition survival was 736±765 days Median survival times were longer for dementia patients with tube feeding (695 days) compared With those without Compared the survival times 185 patients (129 dementia; 44 tube feeding (75 days Takayama Retrospective study with or without tube feeding schizophrenia; 6 mood P<0.001) et al. [109] (>1000 days) in patients with dementia or disorders; 6 others) About 75% of the dementia psychiatry disease patients with tube feeding survived more than a year, and about 50% of them survived more than two years Survival or mortality was not Compared survival outcomes significantly different in the Higaki et al. Retrospective cohort of elderly patients with and 311 patients patients with dementia and [113] study (3 years) without dementia after PEG those without dementia placement (P � 0.62) No difference was found between the incidence rates of mechanical, gastrointestinal, or metabolic complications in Compared the outcomes and patients with advanced Retrospective harmful effects of home tube dementia compared with Orlandoni 585 patients observational study (5 feeding in patients with patients without dementia et al. [122] years) advanced dementia and No evidence to support that patients without dementia tube feeding led to poorer prognosis or low survival in patients with dementia compared with patients without dementia (p>0.05). Journal of Aging Research 11 Table 2: Continued. Article Participants Study design (follow-up) Aim Outcome/conclusion Overall median survival was 123 days, and 30-day mortality was 22% Patients with dementia or 191 patients (16 dementia; 95 Parkinson’s disease had the Evaluated the indications and Malmgren stroke; 11 Parkinson’s disease; Retrospective study (5 longest median survival, survival after PEG insertion in et al. [123] 35 malignancy; 13 neurological years) which was 244 and 233 days, patients older than 65 years diseases; 19 miscellaneous) respectively, while patients with other neurological diseases and malignancy had the shortest median survival, 75 and 106 days, respectively However, since tube feeding is not an absolute contrain- dementia express psychological relief [70] and report being dication in individuals with advanced dementia, the ques- satisfied with the quality of life of patients [52]. Quite considerably also, the associated mortality relating to direct tion then arises as to why PEG feeding should be discouraged in this population group, particularly if there PEG procedure is low (1-2%), and complications are trivial [90]. Table 2 provides the summary of studies on the benefits are no significant differences in the burdens of PEG feeding in demented people compared with people who have other of tube feeding in individuals with advanced dementia. medical conditions. A study that compared survival out- comes of 311 elderly patients with and without dementia 5. Implications for Practice after PEG placement reports that 12-month survival or Generally, when decision is to be made about feeding tube mortality was not significantly different in patients with dementia and those without dementia [113]. More so, a placement in an individual with advanced dementia, careful care should be taken to avoid applying the same blanket rule recently published retrospective review that evaluated burdens and complications associated with tube feeding guidelines and recommendations from professional societies which discourage feeding tube insertion to everyone with claimed no difference was found between the incidence rates advanced dementia. *e lack of randomised controlled trials of mechanical, gastrointestinal, or metabolic complications on this topic due to ethical reasons makes the existing in patients with advanced dementia compared with those scientific evidence to be inconclusive. Hence, the current without dementia [122]. *e authors further report that there is no evidence to support that tube feeding led to guidelines based mostly upon experts’ recommendations and the existing observational studies whose study design poorer prognosis or low survival in patients with dementia compared with those without dementia [122]. and overall quality have been questioned need to be interpreted with caution [28, 30]. *ese guidelines have been In fact, a survival comparison study by Malmgren et al. after PEG insertion in 191 older adults with different medical criticised as overestimating the futility of tube feeding and understating its benefits [25–29]. conditions found patients with dementia or Parkinson’s disease have longest median survival times (244 and 233 While it may be clinically evident in certain individuals with advanced dementia that inserting the feeding tube will days, respectively) compared with patients that had amyo- be burdensome and futile due to poor clinical conditions and trophic lateral sclerosis and malignancy of head and neck who had shortest median survival times of 75 and 106 days, frailty, it may, however, be beneficial for comfort and nu- tritional maintenance in other appropriately selected in- respectively [123]. One recently published (Pih et al.) study also reports that patients with neurologic disease including dividuals who may not be clinically compromised, in order to help achieve the care plan goals [28]. *e decision for PEG dementia have much lower incidence of 30-day mortality post-PEG compared with patients with stroke and malig- placement in late-stage dementia should be made on a case- by-case basis, after considering the evidence supporting nancy [124]. It is important to mention that this review could not establish whether the included dementia patients in the potential benefits versus the substantial burden that tube feeding may constitute for the individual. Each decision- studies of Malmgren et al. and Pih et al. had moderately severe or advanced dementia illness as the patients’ dementia making process should involve multidisciplinary team meeting comprising experienced physicians, nurses, di- stages were not specified. eticians, speech and language team, as well as family members. 4.4. Other Reported Benefits. In addition to maintaining the nutritional needs of individuals with advanced dementia 6. Conclusion experiencing eating problems, feeding tube provides a re- liable route for administration of essential medications It is imperative that all healthcare professionals caring for [52, 94]. Studies also reveal that majority of family members individuals with advanced dementia always check or review and caregivers of PEG-fed individuals with advanced advance directives with family surrogates and implement 12 Journal of Aging Research general consensus is reached such that insertion of feeding patients’ wishes in the care plans [125]. However, in the absence of advance directive or any known preference of a tube may be beneficial for a patient with advanced dementia, regular periodic reassessments should be done for prompt demented patient, physicians should take active role in addressing the concerns of family surrogates and aim to recognition and immediate management of complications provide appropriate information that will aid decision- that are directly related to tube feeding to help optimize making about feeding options. Regrettably, many surrogate comfort and reduce overall morbidity and mortality. families claim they seldom have their informational needs Notwithstanding, the patient’s care plan goals should in- completely met by the healthcare providers [126]. Research clude documentation for potential removal of feeding tube evidence shows that when healthcare professionals use a once the clinical evidence shows the burdens and compli- cations of tube feeding outweigh its benefits. It is therefore, structured decision aid [127] to provide evidence-based information to families or surrogates about feeding options, important to involve the palliative care team specialists for advice with comfort care for patients and provide needed there is proven evidence of significant improvement in the quality of decision-making by the families or the surrogates supports for the family. Further research, particularly ethically modified rand- [24]. *e optimum goal of healthcare practitioners should be to assist the families and caregivers in making informed omised controlled trials, is required to establish whether decision which is in the best interest of the demented in- tube feeding of individuals with advanced dementia provides dividual, particularly as it relates to the person’s comfort and more burdens than benefits or vice-versa, and evaluate the quality of life. impacts on quality of life and survival. Very importantly, since evidence shows that majority of the decision-making for feeding tube placement occur Conflicts of Interest during acute care hospitalization, hospital doctors in acute *e authors declare that they have no conflicts of interest. care settings (including allied health professionals and primary care physicians) should be targeted for in- Authors’ Contributions terventions that will help update their knowledge on the appropriate evidence-based practice relating to the use of Dr. E. Ijaopo wrote the bulk of the review, while Dr. R. tube feeding in individuals with advanced dementia. *is Ijaopo participated in the literature search as well as drafting will help to keep them well-informed and properly posi- and editing the manuscript. Both authors read and approved tioned to educate families and caregivers about the risks and the final manuscript. potential benefits of tube feeding and ultimately provide better end-of-life care for patients with advanced dementia Acknowledgments where necessary [128]. In addition, the medical staffs in acute care settings should be educated and informed to We express a very special appreciation to Mr. John Hudson routinely seek the consult of geriatrics professionals for of Bell library at Royal Wolverhampton NHS Hospital Trust, second opinion since the latter have much more experience Wolverhampton, UK, for his excellent assistance in helping in dealing with dementia patients. with the references. It should also be emphasized that the most available research evidence and experts’ recommendations agree that References careful hand feeding is the recommended standard of care [1] World Health Organization, Dementia: A Public Health for older adults with advanced dementia [5, 22, 47]. 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Tube Feeding in Individuals with Advanced Dementia: A Review of Its Burdens and Perceived Benefits

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Copyright © 2019 Ezekiel Oluwasayo Ijaopo and Ruth Oluwasolape Ijaopo. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
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Hindawi Journal of Aging Research Volume 2019, Article ID 7272067, 16 pages https://doi.org/10.1155/2019/7272067 Review Article Tube Feeding in Individuals with Advanced Dementia: A Review of Its Burdens and Perceived Benefits 1 2 Ezekiel Oluwasayo Ijaopo and Ruth Oluwasolape Ijaopo East Kent Hospital University Foundation Trust, William Harvey Hospital, Ashford, Kent TN24 0LZ, UK Royal Stoke University Hospital, Community Haywood Hospital, Stoke-on-Trent ST6 7AG, UK Correspondence should be addressed to Ezekiel Oluwasayo Ijaopo; eijaopo@yahoo.com Received 22 April 2019; Accepted 6 September 2019; Published 19 December 2019 Academic Editor: F. R. Ferraro Copyright © 2019 Ezekiel Oluwasayo Ijaopo and Ruth Oluwasolape Ijaopo. *is is an open access article distributed under the Creative CommonsAttribution License, which permits unrestricteduse, distribution, and reproduction inany medium, provided the original work is properly cited. Background. Dementia remains a growing concern for societies globally, particularly as people now live longer. About 90% of individuals with advanced dementia suffer from eating problems that lead to general health decline and ultimately impacts upon the physical, psychological, and economic wellbeing of the individuals, caregivers, and the wider society. Objective. To evaluate the burdens and perceived benefits of tube feeding in individuals with advanced dementia. Design. Narrative review. Methods. Computerized databases, including PubMed, Embase, Medline, CINAHL, PsycInfo, and Google Scholar were searched from 2000 to 2019 to identify research papers, originally written in or translated into English language, which investigated oral versus tube feeding outcome in individuals with advanced dementia. Results. Over 400 articles were re- trieved. After quality assessment and careful review of the identified articles, only those that met the inclusion criteria were included for review. Conclusion. Tube feeding neither stops dementia disease progression nor prevents imminent death. Each decision for feeding tube placement in individuals with advanced dementia should be made on a case-by-case basis and involve a multidisciplinary team comprising experienced physicians, nurses, family surrogates, and the relevant allied health professionals. Careful considerations of the benefit-harm ratio should be discussed and checked with surrogate families if they would be consistent with the wishes of the demented person. Further research is required to establish whether tube feeding of individuals with advanced dementia provides more burdens than benefits or vice-versa and evaluate the impacts on quality of life and survival. Advanced dementia can be described as a state of 1. Background worsening mental and physical capabilities decline in per- Dementia remains a public health priority and a growing sons with dementia, thereby resulting in dependency in concern for societies globally, particularly as the number of (basic) daily personal care needs, such as dressing and people suffering from dementia is increasing [1]. Currently, eating, and cause severe limitations in verbal communica- 50 million people in the world have dementia, and these tion [4–6]. Studies show that nearly 90% of people with people are estimated to triple to over 150 million by 2050 [2]. advanced dementia have eating problems [7] which increase In every three second, someone in the world develops de- the risk for weight loss, malnutrition, and general health mentia, thus leading to 9.9 million new cases of dementia decline [8–11]. Dementia causes physical, psychological, and annually [3]. Alzheimer’s disease, which is the commonest economic impacts upon the individuals, caregivers, and the form of dementia, has become the most feared disease in the society at large [12]. It is estimated that almost 82 billion United States ahead of cancer. It kills a lot more people in the hours of informal care are provided annually for people with US than breast and prostate cancer combined and also dementia worldwide [2], and the huge economic impact is currently accounts for the most common cause of death in currently evaluated worldwide to cost one trillion dollars England and Wales [2]. [13]. 2 Journal of Aging Research *e rates of feeding tube placement in advanced de- 2. Methods mentia individuals vary across different countries. For in- Computerized databases, including PubMed, Embase, stance, in the United States, a cross-sectional study involving Medline, CINAHL, PsycInfo, and Google Scholar were 186,835 nursing home residents with advanced cognitive searched from 2000 to 2019 to identify scientific research impairment reports that 34% of residents with advanced papers, originally written in or translated into English dementia in the nursing home had feeding tubes [14]. language. Broad search (MeSH) terms used were “enteral Tube feeding is an alternative feeding method for feeding in dementia,” “tube feeding in dementia,” “artificial people with unsafe swallowing and hence cannot attain nutrition in dementia,” “burdens of tube feeding in de- sufficient oral intake to maintain their body energy re- mentia,” “benefits of enteral feeding in dementia,” and quirements [15]. According to the American Society for “percutaneous endoscopic gastrostomy tube feeding in de- Parenteral and Enteral Nutrition, tube feeding is defined as mentia.” Over 400 articles were retrieved. Only studies that an “enteral nutrition provided through a tube, catheter, or investigated the burdens and/or benefits of tube feeding stoma that delivers nutrients distal to the oral cavity” [16]. versus oral feeding in individuals with advanced dementia *e commonly used feeding tubes are the nasogastric (NG) were selected for review. Other studies on tube feeding that and gastrostomy tubes which include percutaneous included dementia subjects among other medical conditions endoscopic gastrostomy (PEG) tube (considered the gold were also assessed, particularly if data for the dementia standard) and radiologically inserted gastrostomy (RIG) subjects were provided in the studies. Citations from all the tube [17]. relevant studies were also reviewed to obtain additional Discussing feeding options with family surrogates is publications. Data synthesis and conclusions for this study often complex and emotive, raising not only clinical issues came from available evidence obtained from the studies but also ethical ones for the healthcare practitioners [18–20]. reviewed. Similarly, the religious beliefs, cultural background, and ethnicity of families often play significant roles in the sur- rogates’ discussion with healthcare providers [21]. Some 3. Burdens of Tube Feeding in People with family caregivers may have the impression of being in- Advanced Dementia directly contributing to their loved one’s starving when they fail to support enteral feeding for their loved ones with When an individual with advanced dementia experiences dementia. difficulty with eating or persistently refuses foods and their While several professional societies and experts have advanced wishes are unknown, surrogate families are often recommended careful hand feeding as the standard/ceiling faced with making decision regarding what option of feeding of care for all individuals with advanced dementia who route is best appropriate for maintaining nutritional status experience difficulty with oral intake [5, 22–24], other ex- and survival. Should placement of a feeding tube or a careful perts have argued in support of feeding tube placement hand feeding be considered as the ceiling of care? Mitchell [25–29]. Quite justifiably, the debate continues as there has et al. claimed feeding tube insertion rates among people with not been any randomised controlled trial done to compare late-stage dementia in the US nursing home from 2000 to the benefits and burdens of tube feeding interventions with 2014 declined from nearly 12% to 6%, respectively [34]. oral feeding in people with advanced dementia due to ethical While it is true there are declining trends in the placement of concerns. *e guidelines and recommendations from some feeding tubes in advanced dementia, the practice still con- professional societies which discourage feeding tube tinues [35, 36]. placement in severe dementia patients are based only upon *e American Geriatrics Society [22] position statement the available evidence from existing observational studies insists that careful hand feeding is almost as good as tube and some experts’ opinions [22, 30]. feeding for the outcomes of comfort, aspiration pneumonia, However, healthcare practitioners are faced with dis- functional status, and death while, at the same time, avoiding cussing this complex and challenging issue almost on a the burdens and complications associated with tube feeding. regular basis with the surrogate families and caregivers. Some studies [37–39] also report that involving dieticians to Unfortunately, recent studies also show persistent knowl- prescribe dietary supplements in addition to the regular diets edge gap among healthcare professionals regarding tube have proven to be effective in maintaining nutritional status feeding of patients with advanced dementia [31]. *e lack of in elderly people with advanced dementia. appropriate evidence-based knowledge about tube feeding A prospective study that compared clinical course and results in providing second-rated information to patient’s outcomes of 88 elderly demented patients with disabilities families [32, 33]. *is study explores the databases for via their feeding mode found that tube feeding showed no studies conducted in the last two decades to review the beneficial effect on nutritional outcomes and failed to current knowledge on tube feeding of individuals with promote the healing of pre-existing pressure sores compared advanced dementia and discusses its burdens and perceived with oral feeding [40]. Similarly, a recent retrospective benefits. It also provides opportunity for increasing analysis of 392 patients claimed PEG insertion in patients knowledge and awareness for healthcare professionals and with dementia failed to improve the nutritional status, rates the public, particularly the family caregivers involved in of hospital readmission, or the short- and long-term survival caring for individuals with advanced dementia at homes or when compared with PEG feeding among patients with health institutions. other medical conditions such as stroke, motor neurone Journal of Aging Research 3 [49, 50]. *e occurrence of aspiration pneumonia, which disease, and oropharyngeal cancers [41]. *is latter study reinforces the outcome of an earlier systematic review of may occur even when there is no clear evidence of vomiting, can be potentially life-threatening [51]. A prospective ob- seven observational studies which declared there is in- sufficient evidence to conclude that tube feeding of in- servational study that assessed aspiration pneumonia in- dividuals with advanced dementia is effective in improving cidence in advanced dementia patients receiving enteral survival, quality of life, or nutritional status and neither feeding reported that aspiration pneumonia occurred almost helps in promoting the healing of pressure sores [42]. twice as frequently in individuals who received tube feeding *e nonsuperiority of tube feeding over oral feeding is compared with those who received oral feeding [48]. supported further in a recent study that evaluated the Also, many long-term care facilities have a common knowledge and perceptions of 168 physicians about PEG practice of stopping oral feeding/care of residents with feeding in advanced dementia individuals. *e authors re- advanced dementia soon after they are established on tube feeding [52]. As a result, tube-fed dementia patients have port that 71% of the physicians believed careful hand feeding is almost as good as tube feeding for the outcome of comfort, high tendency to suffer from the neglect of their oral health hygiene, thus leading to the colonisation of their oropharynx and nearly half (49%) of them believed nutritional status rarely improves with tube feeding [43]. Comparatively, the by pathogenic microorganisms which subsequently increase general consensus among gastroenterologists in the USA is the risk of oral diseases and aspiration pneumonia [21, 53]. A that PEG placement is not beneficial for patients with ad- study involving frail elderly patients who received tube vanced dementia [44]. In fact, one study finds that nearly feeding in nursing and skilled nursing facilities compared 20% of the tube-fed advanced dementia residents in the with those fed orally reports high prevalence of Gram- nursing home had their feeding tubes either replaced or negative bacteria (Pseudomonas aeruginosa, Klebsiella, and Proteus) isolations in the tube-fed group compared with the repositioned during the 2 years of prospective follow-up, thereby resulting in more frequent visits to the emergency patients’ group that had oral feeding. *e authors report 81% of patients fed via an NG tube, and 51% of patients fed via department. Worse still, nearly one-third (30%) of the de- mented residents who had their feeding tubes replaced PEG as against 17.5% of patients who received oral feeding had Gram-negative bacteria cultured from their oropharynx needed at least two replacements, and the median survival time after a repositioning or replacement was 54 days [45]. [54]. *e presence of these pathogenic Gram-negative bacteria in the oropharyngeal secretions obviously increases the risk for aspiration pneumonia [55]. 3.1. Survival Burden. An 8 year (1999–2007) prospective study of 36,492 nursing home residents with advanced 3.3. Pressure Sores Burden. It is arguable whether tube dementia and new eating problems that investigated whether individuals receiving PEG feeding had better sur- feeding helps to prevent the development of new pressure vival compared with those without PEG found that PEG sores or promotes the healing of the pre-existing pressure feeding, regardless of the timing of insertion, does not ulcers. A study by Arinzon et al. [56] reports that while tube improve survival [46]. Another 18-month follow-up study feeding of very dependent and demented elderly in long- that analyzed survival in older adults with dementia and term care lead to improvements in blood count, renal eating problems, by comparing PEG-fed patients with those function, electrolytes, and hydration status, it does not provide any benefit in preventing pressure sore development who were hand-fed, reported that survival was shorter in the PEG-fed group compared with the group that was fed orally. in the patients [56]. Another cohort study conducted using Minimum Data Set (MDS), obtained from national storage *e authors further state that PEG feeding was associated with notable earlier mortality even after adjustment for likely of demographic and clinical information of nursing home residents living in US-certified Medicare or Medicaid fa- confounders such as age, dementia type, and staging [47]. Besides PEG tubes, feeding people with late-stage de- cilities, compared the records of residents with advanced mentia via an NG tube neither increases survival nor reduces cognitive impairments receiving tube feeding with those aspiration pneumonia risk. Studies show that demented without PEG feeding. *e study analysis showed that resi- patients who receive NG feeding have much higher risk of dents with PEG feeding were more than twice likely to death compared with those receiving oral feeding [48]. *e develop a new pressure ulcer. In the similar manner, mortality rate for tube-fed demented patients rose from established pressure ulcers were less likely to heal or show improvement in advanced cognitively impaired residents 41.9% at 3 months to 58% at 6 months compared with those who had oral feeding, which rose from 11% to 28% at 3 and 6 who had PEG feeding compared with those without PEG feeding [46]. However, it is important to emphasize that the months, respectively [48]. latter report should be used with caution as several experts have issued clear warning that using administrative data 3.2. Aspiration Pneumonia Burden. *e concern that a de- alone for research evidence do not provide the true reflection mented person who experiences repeated choking during of outcome, particularly as the reported figures often have meals has a high risk of developing aspiration pneumonia is bias of overdocumentation [57]. among the most common indications for inserting feeding tube in the first place. Ironically, aspiration pneumonia remains a significant complication of tube feeding and 3.4. Refeeding Syndrome Burden. Refeeding syndrome is frequently accounts for the cause of death after tube feeding another potentially life-threatening complication that may 4 Journal of Aging Research such as abdominal discomfort, diarrhoea, and constipation occur in individuals receiving artificial nutritional support via feeding tubes or parenteral nutrition, after a period of which can contribute to the discomfort experienced by the demented individuals [49–51]. *e diarrhoea problem is a starvation [58, 59]. *e burdens arising from refeeding syndrome are characterised by severe electrolyte imbalance major concern and accounts for the most common gas- and fluid retention that may cause various organs and trointestinal side effect in patients receiving tube feeding. Its systems failure, thus contributing to worsening morbidity causes are multifactorial and may occur in a wide range (2% and high risk of death [25, 58, 60]. to 95%) of patients receiving tube feeding [68, 69]. Also, fluid overload complication resulting in pulmonary oedema and swelling of extremities is another trouble that can occur from 3.5. Costs Burden. One observational study found the daily tube feeding [50]. A survey study of home healthcare nurses costs of hand-feeding individuals with advanced dementia in in United States that explored their perceptions regarding nursing home were higher compared with residents re- suffering, artificial nutrition, and hydration in advanced ceiving tube feeding ($4219 vs. $2379). But, the total costs dementia reports that artificial nutrition and hydration billed to Medicare were greater for the tube-fed residents prolonged patients’ suffering due to burden of the pro- ($6994 vs. $959) due to the high costs associated with the cedure, the need for restraints, and increase chances of placement of feeding tubes and hospital admissions with or developing fluid overload complications [70]. Other studies without the management of likely complications in the also report significant higher risk of in-hospital mortality emergency department [61]. *e Medicare costs for in- after PEG placement [71–73]. A 30-day mortality risk in patient care among nursing home residents with late-stage tube-fed individuals with advanced dementia may vary from dementia showed that one-year hospital costs were $2224 as high as 20% to 40% [43, 74]. more expensive in nursing home residents with feeding It is established that the majority (nearly 75%) of nursing tubes than those without tube feeding [62]. More so, nursing home dementia residents receiving tube feeding had their home residents with advanced dementia receiving tube feeding tube inserted during an acute hospital admission feeding have higher odds of spending more time in intensive [45, 75]. Among the factors that often pressured physicians care units and tend to acquire more healthcare costs for to agreeing to feeding tube placement include lack of treating associated complications related to feeding tube awareness of appropriate evidence-based knowledge on tube placement [62]. Whether or not the cost burden issue feeding; cultural values and clinical practice that encourage provides a valid point to discourage feeding tube placement family-oriented end-of-life decision-making; fear of litiga- in advanced dementia patients is another controversial tion from possibly disallowing treatment that is potentially topic, particularly as healthcare systems operate differently life-sustaining; emotional uneasiness to allow death by across the regions of the world. For instance, in countries “starvation;” and the remuneration factors associated with where the healthcare finance budgets are limited or where the choice of PEG [50, 76]. More so, a recent evidence from individuals or third-party have to pay medical bills, multicentre study involving three tertiary and four com- healthcare cost-benefit analysis may play significant role in munity hospitals in New York that explore the opinion of decision-making, especially where feeding tube insertion is physicians on PEG feeding in late-stage dementia shows that deemed questionable to benefit the individual with severe 63% of physicians claimed that families and surrogate de- dementia. cision-makers insisted on PEG placement even when the physician would not approve of it [43]. 3.6. Other Burdens and Complications. It is not unusual to Besides the dementia disease progression, correctable see family members feeling unease and express concerns that causes of poor oral intake in patients with advanced de- their demented loved ones are too frail or too old to undergo mentia may include the following: oral health-related surgical procedure/operation for feeding tube placement problems [13]; over sedation or loss of appetite from pol- ypharmacy or side effects of drugs [77, 78]; infections (such [63]. *ey may see it as causing unnecessary suffering and burden for the demented individuals. Also, there is serious as respiratory or urinary tract); comorbid medical condi- tions; constipation; depression or anxiety; and distress from worry of possible needs to use physical restraints and sed- ative drugs to prevent patient from pulling out feeding tube other neuropsychiatric symptoms of dementia [5]. In ad- dition, environmental stressors such as lighting, loud noise, due to dementia-related agitation and lack of cognition [50, 64]. Studies have shown that nearly two-thirds of extreme temperature, colours, and crowding are among nursing home residents get agitated and pull their feeding other things that could cause irritations and discomfort, thus tubes within the first two weeks of insertion [65]. Also, there altering oral intake in severe dementia patients [79]. is disconcertment that PEG-fed demented individuals are *erefore, older adults with advanced dementia presenting going to be deprived the pleasure of eating as well as the with eating problems should undergo proper evaluation to natural human interactions that come with oral feeding [64]. rule out these treatable conditions as the cause of the poor oral intake [5]. Other burdens that are directly related to the PEG placement may include concerns about peristomal wound leakage, infection risk, tube leaks or blockage, local pain and 3.7. Burdens Relating to End of Life. It is important to em- bleeding, colonic fistulae, as well as sepsis from abdominal abscess and potential death [51, 66, 67]. Several formulations phasize at this point that individuals with advanced de- mentia may decline to eat or drink as they approach end-of- of the enteral feeds may cause gastrointestinal symptoms Journal of Aging Research 5 these caregivers to have high expectations of benefit from life period. Refusing food and fluid is a normal part of the natural dying process, particularly as the body slowly shuts feeding tube placement and view its intervention as a rep- resentation of high-quality care to address the feeding down. Simple strategies that promote comfort by relieving dry mouth through oral care delivered by well-trained staff, problems [50]. One study that assessed the surrogates’ ex- as well as hand feeding as tolerated should be the main focus pectations of benefit from feeding tube placement found that of care in these individuals [13, 22, 23, 64, 80]. Family 79% of surrogates believed tube feeding would improve surrogates and caregivers should be given adequate coun- patients’ comfort, and 87% of them anticipated better quality selling and properly educated about what constitutes es- of life. More than half (56%) of surrogates also felt tube sential care needs for dying persons so as to help mitigate feeding would provide better independence for patients [97]. their distress and uneasiness at that difficult time. Table 1 Similarly, a recent study that investigated the opinions of provides the summary of studies on the burdens of tube physicians and nurses about artificial nutrition in in- dividuals with advanced dementia report that nearly 80% of feeding in individuals with advanced dementia. physicians supported the administration of artificial nutri- tion when life expectancy is between one month and six 4. Perceived Benefits of Tube Feeding in months, and about 70% of the nurses also supported the idea Advanced Dementia Individuals [98]. In the last two decades, many published studies have Even though there is general consensus that careful hand expressed different views on whether or not the insertion of feeding should be offered to all individuals with advanced feeding tubes in individuals with advanced dementia pro- dementia who experience eating problems, significant vides more harms than benefits or vice-versa concern arises when the demented person persistently re- [25, 27, 40, 81–89]. Obviously, this issue continues to fuses all forms of assisted hand feeding. While eating generate widespread debate among experts in the care of the problems may indicate that advanced dementia has wors- ened and that the individual has entered the final phase of elderly medicine [25, 26, 28]. While it is strongly recommended that no individuals the dementia illness, clinically, this may not necessarily mean that end of life is imminent or that feeding tube including people with advanced dementia should be force- fed, tube feeding provides a safer way of administering foods placement will be futile or harmful to the individual. A and fluids to maintain the nutritional status of people cat- systematic review of 9 studies conducted in 2015 which egorised as having unsafe swallowing [14, 90, 91]. NG tube is evaluated the outcomes of enteral nutrition for people with rarely considered an option in people with late-stage de- advanced dementia claimed no harmful outcomes were mentia due to lack of cognition and intolerance [5, 92]. reported with tube feeding of individuals with advanced Evidence also shows that PEG feeding is associated with a dementia when compared with persons without dementia lower incidence of aspiration when compared with NG tube [27]. feeding [93]. Where NG tube feeding is in place, it is often recommended that its use for feeding should not go beyond 4.1. Aspiration Pneumonia Incidence. A study of elderly 4 weeks due to associated higher risks of tube dislodgement, Japanese patients with dementia who were fed via PEG aspiration pneumonia, and difficulty with diet infusion [94]. showed evidence of reduced incidence of aspiration pneu- Several factors that are independently associated with feeding tube placement in advanced dementia are known to monia with prolonged survival rate of more than two years compared with dementia patients fed via the nasogastric include: younger age, male gender, ethnic minorities, lack of advanced directives, and no DNR (do not resuscitate) order (NG) tube [99]. Another retrospective analysis that evalu- ated 58 severe dementia patients across nine psychiatric [17]. Likewise, the type of dementia and associated comorbidities play significant roles as well. For example, hospitals found that tube feeding helps to decrease the frequency of aspiration pneumonia and use of intravenous nursing home residents with Alzheimer’s dementia and antibiotics and also prolongs median survival times by 23 vascular dementia with a background history of stroke are months compared with dementia patients without tube more likely to have tube feeding, whereas individuals with feeding who had median survival times of two months [100]. comorbidity of cancer are less likely to have tube feeding *e benefit of tube feeding in reducing aspiration pneu- [17]. monia occurrence is further reinforced by recent survey of Dementia illness is overwhelming not just for the af- fected individuals, but also their family and caregivers. Quite doctors’ knowledge and attitudes about tube feeding in late- stage dementia. *e survey reveals that 61.7% of the doctors often, family caregivers experience tension and anxiety around mealtimes [95]. Unfortunately, the mealtime period claimed tube feeding prevents aspiration and more than half (51.7%) of the participants believed tube feeding prevents become unnecessarily prolonged and distressing for the family caregivers as great deal of time, effort, technique, and pneumonia [101]. *e latter findings bolster the result of an earlier survey involving 195 primary care physicians in the patience spent in providing assistance with hand feeding United States that claimed PEG feeding of individuals with may produce almost zero success [25, 96]. Consequently, advanced dementia provides a range of benefits; 76% of the these family caregivers become worried that their loved ones physicians agreed that PEG feeding reduce aspiration may be starving to death from poor oral intake due to pneumonia and 61% of them believed it prolongs survival difficulty in coping with the challenges of food refusal by [74]. their demented relatives. It is therefore, not uncommon for 6 Journal of Aging Research Table 1: Summary of studies on the burdens of tube feeding in individuals with advanced dementia. Article Participants Study design (follow-up) Aim/objective Outcome/conclusion Tube feeding showed no beneficial effects on nutritional outcome in elderly patients with advanced dementia and does Compared the clinical course not aid the healing of pre- and outcome of elderly existing pressure sores as Jaul et al. 88 patients (26 fed orally; 62 Prospective survey study (17 demented patients with compared with oral feeding. [40] fed via NG tube) months) severe disabilities via feeding *e mean number of pressure mode ulcers in the tube and orally fed groups at the start to end of study were 1.05 to 0.97 vs. 2.28 to 1.92 (P � 0.05to0.03), respectively PEG insertion did not reduce rehospitalisation rate at 6 months postprocedure in dementia patients compared with patients who had PEG Compared rehospitalisation for other condition (OR: 2.45 and mortality rates after PEG in the dementia group, 1.86 placement in dementia in the stroke group, and 1.65 Ayman Retrospective analysis (48 patients (165) versus stroke in patients with 392 patients et al. [41] months) patients (124) and other oropharyngeal cancers and patients’ group with head and motor neuron disease; neck cancers and motor P<0.05); also, mortality was neuron disease (103) higher in the dementia group (75%) within the first year after PEG placement compared with the stroke group (58%) and group C (38%) (P<0.001) 81% and 85% of physicians believed PEG placement does not increase survival nor reduce aspiration Evaluated physicians’ pneumonia, respectively; 71% knowledge and perceptions Gieniusz 168 internal medicine Multicentre mixed-mode and 61% of physicians regarding PEG placement in et al. [43] physicians survey (none) claimed careful hand-feeding individuals with advanced of advanced dementia people dementia are nearly as good as tube feeding for the outcomes of comfort and functional status, respectively Feeding tubes placement was associated with poor survival. 19.3% of residents who had feeding tube placement Assessed the natural history needed tube replacement or of feeding tube insertion in 97,111 nursing home (NH) Secondary analysis of repositioning within 145 days Kuo et al. NH residents who followed- residents (5,209 had PEG; minimum data set (MDS) after insertion, and the [45] up for 2 years to measure 91,902 had no PEG) (2 years) median survival was 54 days their health care use and after replacement; also, one- survival year mortality after feeding tube insertion was 64.1% with a median survival of 56 days after insertion Journal of Aging Research 7 Table 1: Continued. Article Participants Study design (follow-up) Aim/objective Outcome/conclusion NH residents who received Assessed benefits and risks of PEG feeding were 2.27 times PEG feeding in the at higher risks of developing Teno et al. 4421 patients (1585 PEG-fed Propensity-matched cohort prevention and healing of a new pressure sores (95% CI [46] and 2836 Non-PEG-fed) study (1 year). pressure ulcer in NH 1.95–2.65) and had less odds residents with advanced of having their established cognitive impairment (ACI) pressure ulcer heal (OR 0.70, 95% CI 0.55–0.89) At the follow-up, after adjustment for possible cofounders, mortality was higher in PEG-fed patients Compared survival rates and than orally fed patients, 70% hospital readmissions in vs. 40%, respectively Ticinesi Prospective observational 184 patients elderly demented patients (P � 0.0002); however, et al. [47] study (18 months) who were PEG-fed versus hospital readmission rates those orally fed during follow-up were insignificantly different in both groups (40% (PEG-fed) vs. 38% (orally fed), age- and sex- adjusted P � 0.88) No significant difference in number of hospital admissions in both groups (p � 0.365); however, the incidence of aspiration pneumonia is twice as high in Compared hospital the alternative feeding group admissions, survival rates, (RR: 2.32; 95% CI 1.22–4.40) and aspiration pneumonia Prospective nonrandomised Mortality at 3 months was Cintra incidence in dysphagic 67 patients observational study (6 11.1% among the oral feeding dementia patients on oral et al. [48] months). group compared with 41.9% feeding versus alternative among the alternative feeding (mostly NG tubes) feeding group (RR: 3.77; 95% CI route 1.35–10.39) At 6 months, mortality was 27.8% in the oral feeding group versus 58.1% among the alternative feeding group (RR: 2.09; 95% CI 1.14–3.83) Tube feeding is correlated with pathogenic organisms’ colonisation of the oropharynx; Gram-negative Compared the pathogenic bacteria were isolated in 81% oral floral colonisation risk in of patients fed via the NG Leibovitz Cross-sectional comparative tube-fed elderly patients tube and from 51% of the 215 patients et al. [54] study (not clear) (n �135) with their orally fed PEG-fed patients as against counterparts (n �80) in 17.5% in the orally-fed skilled nursing facilities patients (P<0.0001); no correlation was found between the duration of tube feeding and bacterial isolations 8 Journal of Aging Research Table 1: Continued. Article Participants Study design (follow-up) Aim/objective Outcome/conclusion Although the tube-fed group had improvements in blood count, renal function, and electrolyte and hydration Evaluated the effectiveness of status, the mortality rate was enteral nutrition in higher in the tube-fed group Arinzon Prospective study (21 months improving survival, 261 patients (42%) than in the control et al. [56] before and after analysis) nutritional, and functional group (27%, P>0.05). Also, status of the very dependent nutrition-related demented elderly patients complications were higher in the tube-fed group than in the orally fed (control) group, 61% and 34%, respectively Even though clinical evidence shows tube feeding does Regarding survival, a study by Shintani compared sur- not prevent the occurrence of aspiration pneumonia, vival periods of advanced cognitively impaired elderly who however, when feeding tube is properly inserted, along with received oral feeding versus PEG feeding. *e author good tube care, and the feeding method is dexterously claimed the survival periods in those who received PEG performed, the risk of vomiting, regurgitation, and aspira- feeding (736±765 days) were nearly as twice as the elderly tion is markedly reduced [53]. who had hand feeding (399±257 days) [108]. Comparably, another recent study by Takayama et al. [109] claims that dementia patients who received tube feeding had longer 4.2. Nutrition and Survival Benefits. Quite commonly, older median survival times of 695 days compared with those adults with advanced dementia suffer from recurrent hos- without tube feeding who had median survival times of 75 pital admissions which cause great concerns for the families. days [109]. Takayama et al. also reported that about 75% of *e recurrent hospitalisations mostly occur from poor oral the dementia patients with tube feeding survived more than intake which results in dehydration and subsequently a year, and nearly 50% of them survived more than two years leading to acute kidney injury (AKI) or acute-on-chronic [109]. renal impairments [102–104]. More so, patients may present While identifying factors that influence survival in older with lethargy, worsening agitation and confusion, and adults with advanced dementia following PEG tube in- systemic deterioration as a result of the electrolyte imbalance sertion, a cohort study reports advanced age and higher from dehydration [105]. baseline serum albumin as strong predictors of mortality and However, one retrospective study that reviews the effec- survival, respectively [110]. Patients with higher serum al- tiveness of PEG feeding for nutritional support in patients with bumin level at baseline and a stable/increased serum al- dementia finds that PEG feeding improves low serum albumin bumin level during follow-up had better survival and and other serum markers of malnutrition, hence preventing improved quality of life one year after PEG tube insertion dehydration, and ultimately resulting in better clinical outcome compared with patients who had lower serum albumin levels [90]. It is therefore not surprising that the earlier study by Shega [110]. Correspondingly, a rise in serum albumin level≥3.0g/ et al. [74] claimed 93.7% of primary physicians believe PEG dL within six months after PEG placement has been found to feeding improves nutritional status in advanced dementia. contribute to survival and essential to having long-term Another prospective-based study that evaluated the global survival [111, 112]. impact of PEG feeding on 60 elderly patients including patients In addition to advanced age and low serum albumin with advanced dementia found significant reduction in the levels, other determinants of poor prognosis in older adults emergency department visits and hospital admissions, partic- with late-stage dementia before or after PEG tube placement ularly in the following 6 months after PEG feeding was started have been reported to include physical dependence and compared with the preceding six months before PEG feeding significant comorbidities such as heart failure, chronic [106]. *e authors further report that PEG feeding improved pulmonary airway disease, diabetes, and malnutrition biochemical markers (haemoglobin, albumin, and total pro- [52, 89, 113–116]. teins) which reflected better nutrition and hydration in the patients [106]. While it is true that tube feeding does not provide cure 4.3. Comparison of Tube Feeding in Advanced Dementia with for the underlying swallowing difficulty in late-stage de- Other Diseases. Individuals who are suffering from ad- mentia, family caregivers and healthcare providers (that vanced/progressive neurological disorders (such as lateral amyotrophic sclerosis, Parkinson’s disease, and stroke) and support tube feeding idea) maintain that PEG feeding helps to mitigate weight loss, sustain nutrition, and reduce the terminal illnesses including cancer, end-stage heart failure, and renal disease have shown demonstrable benefits from suffering that occurs from dehydration or malnutrition [28, 74, 107]. PEG placement for nutritional supports [49, 90, 117–121]. Journal of Aging Research 9 Table 2: Summary of studies on the benefits of tube feeding in individuals with advanced dementia. Article Participants Study design (follow-up) Aim Outcome/conclusion PEG feeding improves low albumin including the serum markers of malnutrition and poor clinical outcome; serum albumin levels (95% CI: 3.3–3.6; P<0.01) and transferrin levels (95% CI: Examined the effectiveness of 182–206; P<0.05) were Nunes et al. Retrospective study (80 PEG feeding for nutritional 46 patients significantly improved after 3 [90] months) support in patients with months of PEG feeding; high dementia albumin, transferrin, and cholesterol levels at admission were positively correlated with survival Mean and median survivals after PEG placement were 21 and 18 months, respectively Survival rates among PEG-fed patients were 27 months higher than those fed via NG Clinical evaluation of elderly tubes (mean (SD): PEG group, Japanese patients with 65.6 (5.6%) versus NG tube Giantin et al. 261 patients (155 PEG-fed; 106 Survey study (6 months dementia who underwent group, 44.4 (9.8%); P � 0.019) [99] NG tube-fed) before and after analysis) PEG feeding versus NG- tube PEG feeding provided feeding evidence of reduced incidence of aspiration pneumonia when compared with NG tube feeding Tube feeding decreased pneumonia and antibiotic use in patients with severe dementia compared with those without tube feeding Tube feeding was associated Evaluated the frequency of with significantly longer Takenoshita 58 patients (46 with tube Retrospective study (60 pneumonia before and after survival (hazard ratio 9.8, 95% et al. [100] feeding and 12 without) months) tube feeding in severe CI 3.6–27.0, p<0.001); dementia patients advanced dementia patients on tube feeding had median survival times of 23 months compared with median survival times of two months among those without tube feeding 10 Journal of Aging Research Table 2: Continued. Article Participants Study design (follow-up) Aim Outcome/conclusion 6-month period after PEG placement showed significant decrease in the mean number of emergency department visits compared with 6months before PEG insertion (1.1 vs. 2.2; P � 0.003) as well as the mean number for hospital admissions (0.3 vs 1.4; 60 patients (26 dementia; 18 Analyzed the global impact of P<0.001). respectively Curdia ´ et al. stroke; 5 head injury; 3 anoxic Prospective study (24 PEG feeding in patients 53.8% of patients with pre- [106] encephalopathy; 2 ALS; 3 other months) followed-up in specialised existing pressure ulcers had conditions) multidisciplinary PEG clinic complete healing after PEG placement at 6-month follow- up PEG feeding improved biochemical markers (such as haemoglobin, albumin, and total proteins) that reflected better nutrition and hydration in the patients Survival periods of the advanced cognitively- Compared survival periods of impaired elderly receiving elderly patients with PEG feeding (736±765days) Shintani Retrospective study (5 neurologic impairments in 80 patients were nearly as twice that of the [108] years) those receiving oral intake, elderly adults having oral PEG feeding or home intake (399±257 days); home parenteral nutrition parenteral nutrition survival was 736±765 days Median survival times were longer for dementia patients with tube feeding (695 days) compared With those without Compared the survival times 185 patients (129 dementia; 44 tube feeding (75 days Takayama Retrospective study with or without tube feeding schizophrenia; 6 mood P<0.001) et al. [109] (>1000 days) in patients with dementia or disorders; 6 others) About 75% of the dementia psychiatry disease patients with tube feeding survived more than a year, and about 50% of them survived more than two years Survival or mortality was not Compared survival outcomes significantly different in the Higaki et al. Retrospective cohort of elderly patients with and 311 patients patients with dementia and [113] study (3 years) without dementia after PEG those without dementia placement (P � 0.62) No difference was found between the incidence rates of mechanical, gastrointestinal, or metabolic complications in Compared the outcomes and patients with advanced Retrospective harmful effects of home tube dementia compared with Orlandoni 585 patients observational study (5 feeding in patients with patients without dementia et al. [122] years) advanced dementia and No evidence to support that patients without dementia tube feeding led to poorer prognosis or low survival in patients with dementia compared with patients without dementia (p>0.05). Journal of Aging Research 11 Table 2: Continued. Article Participants Study design (follow-up) Aim Outcome/conclusion Overall median survival was 123 days, and 30-day mortality was 22% Patients with dementia or 191 patients (16 dementia; 95 Parkinson’s disease had the Evaluated the indications and Malmgren stroke; 11 Parkinson’s disease; Retrospective study (5 longest median survival, survival after PEG insertion in et al. [123] 35 malignancy; 13 neurological years) which was 244 and 233 days, patients older than 65 years diseases; 19 miscellaneous) respectively, while patients with other neurological diseases and malignancy had the shortest median survival, 75 and 106 days, respectively However, since tube feeding is not an absolute contrain- dementia express psychological relief [70] and report being dication in individuals with advanced dementia, the ques- satisfied with the quality of life of patients [52]. Quite considerably also, the associated mortality relating to direct tion then arises as to why PEG feeding should be discouraged in this population group, particularly if there PEG procedure is low (1-2%), and complications are trivial [90]. Table 2 provides the summary of studies on the benefits are no significant differences in the burdens of PEG feeding in demented people compared with people who have other of tube feeding in individuals with advanced dementia. medical conditions. A study that compared survival out- comes of 311 elderly patients with and without dementia 5. Implications for Practice after PEG placement reports that 12-month survival or Generally, when decision is to be made about feeding tube mortality was not significantly different in patients with dementia and those without dementia [113]. More so, a placement in an individual with advanced dementia, careful care should be taken to avoid applying the same blanket rule recently published retrospective review that evaluated burdens and complications associated with tube feeding guidelines and recommendations from professional societies which discourage feeding tube insertion to everyone with claimed no difference was found between the incidence rates advanced dementia. *e lack of randomised controlled trials of mechanical, gastrointestinal, or metabolic complications on this topic due to ethical reasons makes the existing in patients with advanced dementia compared with those scientific evidence to be inconclusive. Hence, the current without dementia [122]. *e authors further report that there is no evidence to support that tube feeding led to guidelines based mostly upon experts’ recommendations and the existing observational studies whose study design poorer prognosis or low survival in patients with dementia compared with those without dementia [122]. and overall quality have been questioned need to be interpreted with caution [28, 30]. *ese guidelines have been In fact, a survival comparison study by Malmgren et al. after PEG insertion in 191 older adults with different medical criticised as overestimating the futility of tube feeding and understating its benefits [25–29]. conditions found patients with dementia or Parkinson’s disease have longest median survival times (244 and 233 While it may be clinically evident in certain individuals with advanced dementia that inserting the feeding tube will days, respectively) compared with patients that had amyo- be burdensome and futile due to poor clinical conditions and trophic lateral sclerosis and malignancy of head and neck who had shortest median survival times of 75 and 106 days, frailty, it may, however, be beneficial for comfort and nu- tritional maintenance in other appropriately selected in- respectively [123]. One recently published (Pih et al.) study also reports that patients with neurologic disease including dividuals who may not be clinically compromised, in order to help achieve the care plan goals [28]. *e decision for PEG dementia have much lower incidence of 30-day mortality post-PEG compared with patients with stroke and malig- placement in late-stage dementia should be made on a case- by-case basis, after considering the evidence supporting nancy [124]. It is important to mention that this review could not establish whether the included dementia patients in the potential benefits versus the substantial burden that tube feeding may constitute for the individual. Each decision- studies of Malmgren et al. and Pih et al. had moderately severe or advanced dementia illness as the patients’ dementia making process should involve multidisciplinary team meeting comprising experienced physicians, nurses, di- stages were not specified. eticians, speech and language team, as well as family members. 4.4. Other Reported Benefits. In addition to maintaining the nutritional needs of individuals with advanced dementia 6. Conclusion experiencing eating problems, feeding tube provides a re- liable route for administration of essential medications It is imperative that all healthcare professionals caring for [52, 94]. Studies also reveal that majority of family members individuals with advanced dementia always check or review and caregivers of PEG-fed individuals with advanced advance directives with family surrogates and implement 12 Journal of Aging Research general consensus is reached such that insertion of feeding patients’ wishes in the care plans [125]. However, in the absence of advance directive or any known preference of a tube may be beneficial for a patient with advanced dementia, regular periodic reassessments should be done for prompt demented patient, physicians should take active role in addressing the concerns of family surrogates and aim to recognition and immediate management of complications provide appropriate information that will aid decision- that are directly related to tube feeding to help optimize making about feeding options. Regrettably, many surrogate comfort and reduce overall morbidity and mortality. families claim they seldom have their informational needs Notwithstanding, the patient’s care plan goals should in- completely met by the healthcare providers [126]. Research clude documentation for potential removal of feeding tube evidence shows that when healthcare professionals use a once the clinical evidence shows the burdens and compli- cations of tube feeding outweigh its benefits. It is therefore, structured decision aid [127] to provide evidence-based information to families or surrogates about feeding options, important to involve the palliative care team specialists for advice with comfort care for patients and provide needed there is proven evidence of significant improvement in the quality of decision-making by the families or the surrogates supports for the family. Further research, particularly ethically modified rand- [24]. *e optimum goal of healthcare practitioners should be to assist the families and caregivers in making informed omised controlled trials, is required to establish whether decision which is in the best interest of the demented in- tube feeding of individuals with advanced dementia provides dividual, particularly as it relates to the person’s comfort and more burdens than benefits or vice-versa, and evaluate the quality of life. impacts on quality of life and survival. Very importantly, since evidence shows that majority of the decision-making for feeding tube placement occur Conflicts of Interest during acute care hospitalization, hospital doctors in acute *e authors declare that they have no conflicts of interest. care settings (including allied health professionals and primary care physicians) should be targeted for in- Authors’ Contributions terventions that will help update their knowledge on the appropriate evidence-based practice relating to the use of Dr. E. Ijaopo wrote the bulk of the review, while Dr. R. tube feeding in individuals with advanced dementia. *is Ijaopo participated in the literature search as well as drafting will help to keep them well-informed and properly posi- and editing the manuscript. Both authors read and approved tioned to educate families and caregivers about the risks and the final manuscript. potential benefits of tube feeding and ultimately provide better end-of-life care for patients with advanced dementia Acknowledgments where necessary [128]. In addition, the medical staffs in acute care settings should be educated and informed to We express a very special appreciation to Mr. John Hudson routinely seek the consult of geriatrics professionals for of Bell library at Royal Wolverhampton NHS Hospital Trust, second opinion since the latter have much more experience Wolverhampton, UK, for his excellent assistance in helping in dealing with dementia patients. with the references. It should also be emphasized that the most available research evidence and experts’ recommendations agree that References careful hand feeding is the recommended standard of care [1] World Health Organization, Dementia: A Public Health for older adults with advanced dementia [5, 22, 47]. 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