INTRODUCTION — The societal burden of dementia as a terminal illness is substantial and increasing, and patients with advanced dementia and their caregivers are faced with a range of physical and psychosocial needs at the end of life. Palliative care is an interdisciplinary medical specialty that focuses on preventing and relieving suffering and on supporting the best possible quality of life for patients and their families facing serious illness. Effective palliative care of patients with advanced dementia can improve patients' symptoms, lessen caregiver burden, and help ensure that treatment decisions are well informed and weighed in the context of patient, family, and caregiver goals and needs. (See "Benefits, services, and models of subspecialty palliative care".)
This topic will review aspects of palliative care that are specific to patients with advanced dementia. Other management issues in patients with dementia, such as behavioral symptoms and safety and societal concerns, are discussed elsewhere. (See "Management of neuropsychiatric symptoms of dementia" and "Management of the patient with dementia".)
SCOPE OF THE PROBLEM — As the population ages, the overall burden of advanced dementia is increasing worldwide. In the United States in 2012, an estimated 5.2 million individuals over 65 years of age had Alzheimer disease (AD), a number that is expected to reach 6.7 million by 2025 [1,2]. AD was the sixth leading cause of death among decedents >65 years in 2017 [3]. Costs attributable to their care range between 157 and 215 billion dollars and are expected to more than double by 2040 [4].
The nursing home is the most common site of death among persons dying with dementia, and therefore an important site for their terminal care [5,6]. While a relatively smaller proportion of these patients die at home or in assisted living communities, specific consideration is needed to support their caregivers, including earlier engagement of hospice services.
There are persistent racial and regional differences in the quality of care provided to patients with advanced dementia. For example, Black (versus White) patients with advanced dementia and those living in the Southeastern United States (versus other regions) are far more likely to receive aggressive, costly interventions of questionable clinical benefit at the end of life, such as tube feeding, hospitalizations, and care in the intensive care unit (ICU) [7-10]. For individual practitioners, this observation implies that they should be certain to provide culturally sensitive and high-quality counseling to all patients with advanced dementia regardless of their individual backgrounds.
PROGNOSIS
Clinical course — Advanced dementia typically refers to a state of profound physical and cognitive disability that is the end result of a variety of neurodegenerative diseases, the most common of which is Alzheimer disease (AD). The Global Deterioration Scale (GDS) is a validated and reliable instrument describing the clinical progression of dementia [11]. Scores range from 1 to 7, with higher scores indicating greater dementia severity. Stage 7 of the GDS provides a useful description of advanced dementia: profound memory deficits (inability to recognize family members), speech limited to fewer than five words, total functional dependence, incontinence, and inability to ambulate [12].
The last years of life in advanced dementia are characterized by a prolonged trajectory of severe disability [13]. The Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life (CASCADE) study followed 323 nursing home residents with advanced dementia to better describe their clinical course and cause of death [14]. Key findings included the following:
●Over the 18-month study period, 55 percent of the cohort had died, and the median survival was 1.3 years.
●Infections and eating problems were common complications. Over the course of the study, 41 percent of the residents had pneumonia, 51 percent had a febrile episode, and 86 percent developed an eating problem.
●Infections and eating problems were associated with high mortality. The adjusted six-month mortality rates after the development of pneumonia, a febrile episode, and eating problems were 47, 45, and 39 percent, respectively.
●Other major acute illnesses (eg, hip fracture, myocardial infarction) were rare in the last three months of life.
Life expectancy and hospice eligibility — Prognostication has important implications for clinical decision-making. One study found that patients with advanced dementia were less likely to have interventions such as feeding tubes, hospital transfers, bladder catheterizations, parenteral therapy, and venipunctures when their proxy's estimate of their life expectancy was shorter rather than greater than six months (4.4 versus 49.6 percent; adjusted odds ratio [OR] 0.46, 95% CI 0.34-0.62) [15].
Life expectancy is also the basis to determine access to the US Medicare hospice benefit, which requires an estimated survival of six months or less [14,16]. Unfortunately, mortality risk prediction models that accurately estimate survival in advanced dementia have proved elusive [17-21].
In the most rigorous effort to date, the Minimum Data Set [22] was used to create the Advanced Dementia Prognostic Tool (ADEPT), a 12-item additive score that includes information on patient age, sex, level of functional dependence, nutritional status, and presence or absence of various symptoms and medical conditions, such as congestive heart failure and shortness of breath [23]. In a prospective validation study of 606 nursing home residents with advanced dementia, ADEPT had a specificity of 89 percent and a sensitivity of 27 percent for predicting death within six months, which was only slightly better than current US Medicare hospice eligibility guidelines, which had the same specificity but a lower sensitivity (20 percent) [17]. (See 'US Medicare guidelines' below.)
The difficulty in estimating six-month survival in advanced dementia underscores the notion that access to palliative care for these patients should not be guided by estimates of life expectancy, but rather by patients' preference to focus care on maximizing comfort and quality of life.
US Medicare guidelines — In the United States, access to hospice is determined by Medicare eligibility guidelines. According to Medicare, patients with a primary diagnosis of dementia and related disorders must meet both of the following requirements to be eligible for hospice (table 1):
●Stage 7 or beyond on the Functional Assessment Staging (FAST) scale [24]; unable to ambulate without assistance; unable to dress without assistance; unable to bathe without assistance; urinary and fecal incontinence, intermittent or constant; and no consistently meaningful verbal communication (stereotypical phrases only or the ability to speak is limited to six or fewer intelligible words)
●The occurrence of at least one of six specified medical complications in the prior year:
•Aspiration pneumonia
•Pyelonephritis
•Septicemia
•Multiple decubitus ulcers ≥ stage 3 (see "Clinical staging and general management of pressure-induced skin and soft tissue injury", section on 'Clinical evaluation')
•Recurrent fever after antibiotics
•Inability to maintain sufficient fluid and calorie intake with 10 percent weight loss during the previous six months or serum albumin <2.5 g/dL
Alternatively, patients are considered to have a life expectancy of ≤6 months by Medicare if they meet specific criteria for a decline in clinical status that is not considered to be reversible, independent of the underlying diagnosis (table 2).
Benefits of hospice — Observational studies have found several benefits of hospice among patients with advanced dementia, including a lower probability of hospitalization during the last 30 days of life (19 versus 39 percent for hospice versus non-hospice patients) [25]; a higher probability of regular treatment for daily pain (44 versus 27 percent) [26,27]; and greater family and caregiver satisfaction with care [27,28].
Although hospice has historically underserved patients dying with dementia, utilization in this population has increased in the past decade [6,29]. Given its benefits, hospice referral should be included in the treatment options for patients with advanced dementia and their families. (See "Hospice: Philosophy of care and appropriate utilization in the United States".)
While hospice programs are beneficial, they are not a prerequisite for palliative care approach, which is appropriate in all patients with advanced dementia. (See "Hospice: Philosophy of care and appropriate utilization in the United States", section on 'Distinction between hospice and palliative care'.)
DECISION-MAKING SUPPORT
Framework for decision-making — Medical decision-making in advanced dementia can be challenging. Decisions are made by surrogates if clear plans had not been made by the patient prior to cognitive decline. These decisions are often emotional and value laden, based on limited outcome data, and influenced by many external factors. Faced with these challenges, practitioners should be prepared to provide informative and compassionate decision support.
Decision-making should follow an ethical framework reflecting a balance of benefits and burdens, and respect for autonomy [30]. Patients with advanced dementia have profound cognitive impairment, and decision-making therefore becomes the responsibility of their designated health care proxies. Proxies need to be advised that their decisions should reflect their perceptions of the patients' wishes as guided by the steps for substitute decision-making [31] (see "Advance care planning and advance directives", section on 'Surrogate decision-makers'):
●Consideration of advance directives
●Making a substituted judgment
●Weighing what is in patients' best interests
Treatments received by patients with advanced dementia should align with their desired primary goals of care. Some patients may wish to receive all available medical treatments with the goal of living as long as possible; others may wish to receive only treatments that relieve distressing symptoms with the goal of maximizing comfort. Somewhere in between, patients may opt to receive potentially curative but conservative treatments (ie, oral antibiotics), with the goal of returning to their baseline status prior to the acute illness. In prospective studies of nursing home patients with advanced dementia, 62 to 90 percent of proxies stated a preference for comfort care over more aggressive options [14,32].
These approaches are not necessarily mutually exclusive. Palliative care services, including aggressive symptom management, are routinely offered alongside curative and disease-modifying treatments for patients with serious illnesses. Thus, patients who wish to pursue potentially life-prolonging care can still receive treatments to reduce discomfort, and those opting for comfort-focused care for a particular problem may still receive potentially curative treatment for another. Within the context of these broad goals, treatment decisions must be tailored to each individual and clinical situation. (See "Benefits, services, and models of subspecialty palliative care" and "Discussing goals of care" and "Advance care planning and advance directives".)
Advance care planning — Advance care planning is critical in the management of patients with advanced dementia, and it is the strongest and most consistent modifiable factor associated with avoiding unwanted or unnecessary treatments [7,14,33-35]. Primary care providers have an opportunity to prepare patients with early disease and their families about what to expect in the later stages of dementia [14,36].
The standard components of advance care planning apply to advanced dementia and are discussed separately. (See "Advance care planning and advance directives".)
In patients with dementia, we emphasize the following points [37,38]:
●Start early. Ideally, these discussions should occur before the patient loses decision-making capacity to allow the opportunity for individuals to participate and articulate their wishes. (See "Assessment of decision-making capacity in adults".)
●Establish directives in writing, including formal appointment of a health care proxy.
●Talk about what is to come. As dementia progresses, patients experience not only loss of cognition, but also the loss of basic bodily functions, particularly the ability to swallow correctly and fight infections. These complications are the most common proximate causes of death in advanced dementia.
●Solicit treatment preferences before complications arise, if possible. These conversations provide a foundation for decision-making when future complications arise, both expected and unexpected. (See "Discussing goals of care".)
●Consider using a structured conversation guide and written materials tailored to patients and families with dementia [36,39]. Publicly available online resources include printable guides developed by The Conversation Project [39].
In the CASCADE study of over 300 nursing home residents with advanced dementia, residents whose proxies understood the clinical course and poor prognosis of the disease were less likely to receive aggressive interventions (hospital transfer, tube feeding, or intravenous [IV] therapy) in the last three months of life [14]. By contrast, a lack of specific directives limiting aggressive care (eg, do-not-resuscitate, do-not-hospitalize) has been associated with greater use of feeding tubes [33,40], more terminal hospitalizations [7,41], more aggressive care for pneumonia [42], higher health care expenditures [35], worse family or caregiver satisfaction with end-of-life care [43], poorer family mental health outcomes [44,45], and lower use of hospice [27].
Limited evidence suggests that structured interventions, such as palliative care consultation or decision aids, may be of benefit in patients with advanced dementia [46,47]. In one cluster randomized trial, use of a video decision aid and structured care plan meeting among families of patients with advanced dementia resulted in better communication about end-of-life care, increased use of medical orders defining scope of treatment, and fewer hospital transfers compared with an informational video and usual care plan meeting control [47]. Similarly, in another cluster randomized trial, an advanced care planning video provided to 402 nursing home residents and their proxies was associated with increased proportion of those with directives for no tube feeding (70 versus 62 percent) [32]. While rates of advanced directives for other interventions (eg, do not hospitalize) did not differ between study arms, a subgroup analysis found that for those who preferred comfort care, provision of the video was associated with higher rates of directives that aligned with that preference (72 versus 53 percent).
EATING PROBLEMS — The onset and progression of eating problems is a hallmark of advanced dementia, and nutritional support is the most common treatment decision faced by proxies of patients with advanced dementia [29].
Causes and evaluation — The main causes of eating problems in patients with advanced dementia are oral dysphagia (manifest by pocketing or spitting food), pharyngeal dysphagia (which may result in delayed swallowing and aspiration, frequently leading to aspiration pneumonia), and an inability to perform the task of eating. Depression, while difficult to diagnose in advanced dementia, may also manifest as disinterest in food or refusal to eat. (See "Oropharyngeal dysphagia: Etiology and pathogenesis", section on 'Etiology and pathogenesis' and "Diagnosis and management of late-life unipolar depression".)
At the onset of eating problems in a patient with advanced dementia, acute medical problems (eg, infection, stroke, medication side effects) need to be considered and excluded. Patients with dysphagia caused by a stroke typically have acute neurologic signs and symptoms that extend beyond the dysphagia, such as dysarthria, asymmetrical facial or limb weakness, or new aphasia. Easily reversible causes should be addressed, such as constipation or dental problems.
Management — Various conservative measures to try to improve oral intake may be tried, including altering the texture of food; offering finger foods, smaller portions, or favorite foods; and nutritional supplements [48]. Consultation by an occupational therapist, speech and language pathologist, or nutritionist is suggested in more functional patients to help implement such strategies. (See "Swallowing disorders and aspiration in palliative care: Assessment and strategies for management", section on 'Facilitative swallowing strategies'.)
A systemic review of oral feeding options for persons with various stages of dementia and eating problems concluded that there was moderate-quality evidence that high-calorie supplements promote weight gain, but low-quality evidence that appetite stimulants, assisted feeding, and modified foods (eg, lyophilized foods with modified texture) result in weight gain [48]. Sparse but consistent evidence showed that oral feeding options do not improve function, cognition, or mortality for people with moderate to severe dementia.
Oral versus tube feeding — Despite conservative efforts to improve oral intake, most advanced dementia patients will continue to have eating problems in the final stages of their illness. There are two main considerations in this situation: continued oral feeding by hand, or placement of a long-term feeding tube (ie, percutaneous endoscopic gastrostomy [PEG] tube).
The best available evidence fails to demonstrate any health benefits of tube feeding in advanced dementia, and there are risks associated with the intervention [30,49,50]. For reasons that will be discussed below, we suggest ongoing hand feeding rather than tube feeding as the preferred approach to nutritional support in patients with advanced dementia. This is the recommended approach of the American Geriatrics Society [51], the Canadian Geriatrics Society [52], and the American Board of Internal Medicine's Choosing Wisely Campaign [53].
The main goal of continued oral feeding is to provide food and drink to the extent that the patient enjoys it. This focus is on comfort rather than providing a prescribed daily caloric intake. Benefits of hand feeding include the continued pleasure of tasting food, insofar as it remains comfortable for the patient, and interaction with family members and caregivers during feeding times. Conscientious hand feeding is labor intensive, requiring approximately 45 to 90 minutes per day [54]. Strategies that can improve the success of hand feeding include minimizing distractions, emphasizing sensory clues, providing assistive feeding utensils, optimizing patient positioning, and scheduling meals at times of greatest alertness and function. (See "Swallowing disorders and aspiration in palliative care: Assessment and strategies for management", section on 'Additional suggestions'.)
The option of continued hand feeding does not mean medical care is stopped. Patients can continue to receive a host of palliative treatments and potentially curative treatments for other problems (ie, antibiotics for infections, surgical repair of a hip fracture to reduce pain).
Long-term tube feeding is most often achieved by the placement of a PEG tube. Purported benefits for tube feeding in advanced dementia include prolonging life, preventing aspiration, improving malnutrition and its sequelae (ie, pressure sores), and alleviating symptoms of hunger or thirst [55,56].
However, a systematic review in 2009 that included seven observational studies found that the available evidence failed to demonstrate that enteral tube feeding achieved any of these outcomes in patients with advanced dementia [57]. It is important to note, however, that there have been no randomized trials of tube feeding versus continued oral feeding in advanced dementia. The highest-quality data are derived from observational studies that may be limited by selection bias. Acknowledging this limitation, multiple large cohort studies have found that tube feeding in advanced dementia does not prolong survival [33,58,59]. In a nationwide study of 36,492 nursing home residents with advanced cognitive impairment, 5.4 percent of patients underwent insertion of a feeding tube within a year following the onset of feeding problems [58]. In a multivariate analysis, there was no difference in survival between those who did and did not undergo feeding tube insertion (adjusted hazard ratio [aHR] 1.03, 95% CI 0.94-1.13) [58]. Similarly, early versus late feeding tube insertion relative to the onset of eating problems was not associated with improved survival.
Tube feeding has also not been shown to improve nutritional status or pressure ulcers [60-62]. Feeding tubes will not prevent aspiration among severely demented patients who aspirate, in part because they aspirate oral secretions and regurgitated gastric contents [63,64]. While it is impossible to know whether advanced dementia patients experience hunger or thirst, an observational study found no measurable increase in discomfort following a decision to withhold artificial nutrition or hydration among patients with advanced dementia [65].
In addition to the general risks associated with PEG tube placement, proxies should be apprised of specific risks in advanced dementia. (See "Gastrostomy tubes: Complications and their management".)
●Tube dislodgement, blockage, or leakage was the most common reason for burdensome emergency department transfers in a large prospective study of nursing home patients with advanced dementia [41].
●Agitated demented patients may require physical or chemical restraints to prevent tube dislodgment, and tube feeding has been shown to be associated with greater use of restraints [64].
●In a propensity-matched cohort study of 1124 hospitalized nursing home residents with advanced cognitive impairment and feeding problems, those who received a PEG tube during the hospitalization were 2.3 times more likely than those who did not receive a PEG tube to develop a new pressure ulcer over the next year, and were less likely to have an existing ulcer heal (adjusted odds ratio, 0.70) [62].
To facilitate decision-making, proxies should be counseled that eating problems are expected in the final stage of dementia. With that understanding, providers should ascertain from the proxy the main goal of care and present the treatment option that best aligns with that goal. It is the responsibility of all members of the care team to understand any previously expressed wishes of an individual regarding tube feeding through review of advance directives and discussion with surrogate caregivers, and incorporate these wishes into the care plan [51]. Decision aids may assist in this process. As an example, in a cluster randomized trial in which 24 North Carolina nursing homes were randomly assigned to use of a decision aid for feeding options or standard care, proxies in the intervention facilities had reduced decisional conflict, had increased knowledge, and were more likely to discuss eating problems with providers (46 versus 33 percent, p = 0.04) [66].
In the United States, the proportion of nursing home residents with advanced dementia who received a feeding tube within one year of the onset of feeding problems decreased by approximately 50 percent between 2000 (11.7 percent) and 2014 (5.7 percent) [8]. While insertion rates fell by a similar proportion in Black and White residents, they remained relatively higher among Black residents compared with White residents (17.5 versus 3.1 percent in 2014).
INFECTIONS AND FEVER — Infections and fever are very common in advanced dementia. They account for approximately one-quarter of all treatment decisions and are often terminal events. The respiratory and urinary tracts account for approximately one-half and one-third of all suspected infections, respectively [67]. The approach to treatment requires judicious consideration of the balance between the palliative care needs of the patient and standard infectious disease practice.
Risks associated with antimicrobial misuse — Antimicrobial use is extensive in advanced dementia, with up to 40 percent of patients receiving antimicrobials in the last few weeks of life [67,68]. Much of this use may be inappropriate, however, as antimicrobials are often started without adequate clinical evidence of an infection [69-72].
Antimicrobial misuse is a major concern not only from the perspective of individual patient burden, but also from a public health standpoint, due to the emergence of antimicrobial-resistant bacteria [73]. Antimicrobial exposure is the greatest risk factor for acquisition of resistance, and colonization rates with multidrug-resistant organisms are three times higher among nursing home residents with advanced dementia compared with other residents [74]. In a prospective cohort study, 67 percent of nursing home residents with advanced dementia were colonized with at least one multidrug-resistant organism during a 12-month follow-up period [75]. Residents had higher acquisition rates if they had received at least one day of exposure to quinolones (adjusted hazard ratio [aHR] 1.89, 95% CI 1.28-2.81) or third- or fourth-generation cephalosporins (aHR 1.57, 95% CI 1.04-2.40). (See "Principles of infection control in long-term care facilities", section on 'Antimicrobial stewardship'.)
Other risks of antimicrobial administration of particular concern in frail older adults include Clostridioides difficile infections [76], potential discomfort associated with parenteral administration [77], as well as drug interactions [78]. Detailed information on drug interactions can be found in the Lexicomp drug interaction program within UpToDate.
Evaluation and management — The evaluation and treatment of suspected infections in advanced dementia should be guided by the goals of care. The main treatment choice is whether to administer potentially curative antimicrobials or to institute solely palliative measures (eg, oxygen, acetaminophen).
When antimicrobial use is consistent with the goals of care of a patient and their family or caregivers, the provider should conduct a clinical assessment to be certain there is adequate evidence of an infection to justify such treatment. The minimal clinical criteria to initiate antimicrobials in the nursing home population endorsed by the Society for Healthcare Epidemiology of America (SHEA) provide a useful guide [70] that has been adapted for use in advanced dementia (table 3) [72,79]. In one study, only 44 percent of suspected infectious episodes treated with antimicrobials in nursing home residents with advanced dementia met these criteria [75]. Once the decision to initiate antimicrobials is made, the need for confirmatory tests (eg, chest x-rays, white cell counts, urine specimen by catheterization) should be balanced by the potential burden of obtaining the investigations in these terminally ill patients.
In the absence of any randomized trials, it remains unclear as to whether antimicrobial therapy for infections in advanced dementia improves survival or symptomatic relief beyond that which can be achieved by high-quality palliative care. Observational data suggest that antimicrobial treatment for pneumonia is associated with better survival but worse comfort [42], whereas antimicrobial treatment for suspected urinary tract infection (UTI) may not impact overall survival [80].
As an example, in the CASCADE study of over 300 nursing home residents with advanced dementia, there were 225 pneumonia episodes treated with oral antimicrobials (55 percent), intramuscular (IM) antimicrobials (16 percent), intravenous (IV) antimicrobials or hospitalization (20 percent), or no antimicrobials (9 percent) [42]. The following results were observed:
●Patients who received antimicrobials lived an average of 273 days longer than those who did not receive antimicrobials, but survival did not differ among the three antimicrobial routes (aHRs for oral, IM, or IV versus no antimicrobials: 0.2, 0.3, and 0.2, respectively).
●Residents receiving any form of antimicrobial treatment for pneumonia had worse comfort (lower scores on the Symptom Management at the End-of-Life in Dementia scale [81]) compared with untreated residents.
These data suggest that even when prolongation of life remains a goal, it may be possible to give antimicrobials orally, if appropriate, and avoid more aggressive parenteral treatment or hospitalization.
Suspected urinary tract infections — The assessment of advanced dementia patients for UTIs warrants specific consideration, as they are particularly challenging to diagnose and the most common reason for antimicrobial misuse [72]. In a prospective study of nursing home residents with advanced dementia, 80 percent of suspected UTIs treated with antimicrobials lacked minimal criteria to justify such treatment [72].
The diagnosis of a UTI requires symptoms, together with positive findings on urinalysis and urine culture. In advanced dementia patients, however, urine specimens are commonly positive in the absence of infection [72], and antimicrobial therapy is not warranted for asymptomatic bacteriuria [70,82]. (See "Acute simple cystitis in adult males" and "Acute simple cystitis in females".)
Among patients without indwelling urinary catheters, who are at a much lower risk of having a UTI than catheterized patients, SHEA criteria require fever plus another symptom or sign as minimal clinical criteria to start antimicrobials [70]. In patients with advanced dementia, signs and symptoms of a UTI can be difficult to discern. Since patients are effectively mute, classic symptoms such as dysuria, urgency, costovertebral tenderness, and suprapubic pain are unreliable and rarely reported [72], and mental status change may be the only observable symptom. It is important to recognize, however, that mental status change alone is not a sensitive or specific symptom of UTI [72]. In most instances, therefore, both fever and mental status change should be present in order to justify antimicrobial initiation for a suspected UTI in a noncatheterized patient with advanced dementia (table 3).
In patients with an indwelling urinary catheter, fever alone may be adequate evidence for initiation when there are no additional symptoms (eg, new cough) to suggest an alternative source of infection (table 3).
Antimicrobials should be discontinued as soon as the urinalysis and urine culture results are confirmed negative. If the tests results are positive, the provider must still apply clinical judgment to assess whether the combination of signs or symptoms and positive urine tests reflect a true UTI rather than another etiology.
HOSPITALIZATION — Hospitalization is common in advanced dementia patients at the end of life and in many cases avoidable. Approximately 16 percent of United States decedents dying from dementia die in hospitals [5], and nursing home residents with advanced dementia experience an average of 1.6 hospital transfers in the last 90 days of life [83]. It is estimated that 75 percent of hospitalizations among patients with advanced dementia are avoidable, because hospital-level care is either unnecessary or inconsistent with preferences [41]. Data suggest that pneumonia, the most common reason precipitating hospitalization in these patients, can be treated with equal efficacy in the nursing home or community, with fewer burdens to the patient and less cost to the health care system [42,84,85].
Hospitalizations are traumatic and associated with worse end-of-life outcomes among patients with advanced dementia [7,77]. Hospitals are also a key site of treatment decisions, although decision-making is often suboptimal due to the discontinuity of care, unfamiliar providers, and pressures for timely discharge. For example, 68 percent of feeding tubes are placed in patients with advanced dementia during a hospital admission [83].
For the majority of advanced dementia patients for whom comfort is the priority, hospitalization is seldom consistent with this goal, with rare exceptions (eg, hip fracture) [14,86]. In most instances, the burdens of hospitalization outweigh the benefits and should be avoided. Providers should routinely counsel proxies and ascertain their preferences for hospitalizing their loved one with advanced dementia prior to the onset of an acute illness. The desire to avoid hospitalization should be formalized as a written advance directive or do-not-hospitalize order. (See 'Advance care planning' above.)
OTHER MANAGEMENT ISSUES
Pain and symptom management — Distressing symptoms in advanced dementia are common. In the CASCADE study of over 300 nursing home patients with advanced dementia, nearly 25 percent of patients were reported to be in pain, 30 percent had dyspnea, and 30 percent had agitation in the last three months of life [14]. In a separate cohort evaluated for symptoms in the last week of life, the three most common symptoms were pain (52 percent), dyspnea (35 percent), and agitation (35 percent) [87].
Pain measurement is challenging in patients with profound cognitive impairment, and several disease-specific tools to assess pain and discomfort in advanced dementia have been developed [81,88]. Of these, we suggest using the Pain Assessment in Advanced Dementia (PAINAD) instrument, which is relatively easy to use and has proven reliability and validity (table 4) [88,89]. PAINAD includes assessment of five different domains: breathing, negative vocalization, facial expressions, body language, and ability to be consoled. Scores range from zero to five, with higher scores indicating more severe pain. (See "Approach to symptom assessment in palliative care", section on 'Pain'.)
Standard management approaches to alleviate physical discomfort (eg, dyspnea, pain) should be pursued in patients with advanced dementia and are discussed in detail separately. When possible, a specialized palliative care team or hospice referral should be sought to assist with symptom management. (See "Assessment and management of dyspnea in palliative care".)
Nonpharmacologic and pharmacologic approaches to the management of agitation in patients with dementia and in patients in the last hours and days of life are discussed separately. (See "Palliative care: The last hours and days of life", section on 'Anxiety and agitation' and "Management of neuropsychiatric symptoms of dementia", section on 'Severe or refractory symptoms'.)
Urinary incontinence — When managing incontinence in adults with dementia, it should not be assumed that the cognitive impairment is the only cause of incontinence. Other factors (eg, functional impairment, comorbid conditions, and medications) should also be investigated and treated. Goals of care and treatment preference discussions should include the needs and wishes of the caregivers who will oversee or implement treatment [90]. Nonpharmacologic approaches are preferred in persons with dementia. Pharmacotherapies, particularly anticholinergic medications, should be used with caution, as patients with dementia may experience more side effects [91].
The management of urinary incontinence in this setting is discussed in detail separately. (See "Medical care in skilled nursing facilities (SNFs) in the United States", section on 'Urinary incontinence'.)
Continuation of anti-dementia and other chronic medications — The use of pharmaceutical agents in advanced dementia needs to be guided by the goals of care. Patients with advanced dementia often have swallowing problems, and discontinuing unnecessary medications can improve quality of life and reduce adverse effects. (See "Deprescribing", section on 'Which patients and which medications should be targets for deprescribing?'.)
A consensus panel of experts has identified medications that are inappropriate in advanced dementia [92,93]. Examples of chronic daily medications that no longer have clear benefits in patients with advanced dementia include lipid-lowering agents and calcium supplements. In studies of advanced dementia patients in nursing homes, 54 to 86 percent of patients receive at least one medication of questionable benefit, including cholinesterase inhibitors, memantine, antiplatelet agents (except aspirin), lipid-lowering drugs, sex hormones, hormone antagonists, leukotriene inhibitors, cytotoxic chemotherapy, and immunomodulators [94,95]. In one of the studies, drugs of questionable benefit accounted for 35 percent of the total average 90-day medication expenditures [94].
There is very limited evidence to support the administration of dementia drugs including cholinesterase inhibitors (ie, donepezil, rivastigmine, and galantamine) or memantine (an N-methyl-D-aspartate receptor antagonist) in patients with advanced dementia at a Global Deterioration Scale (GDS) stage of 7. The few clinical trials of these drugs that reported modest functional and cognitive improvements in "advanced" Alzheimer disease (AD) largely included subjects who had not yet reached GDS stage 7. (See "Cholinesterase inhibitors in the treatment of dementia".)
For patients with advanced dementia already on these drugs, it may be reasonable to discontinue them and only restart them in the event of patient decline (eg, worsening agitation or function). An overall discussion of deprescribing, including deprescribing of medications for dementia, is provided separately. (See "Deprescribing" and "Deprescribing", section on 'Cholinesterase inhibitors and memantine'.)
SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Nutrition support (parenteral and enteral nutrition) in adults" and "Society guideline links: Cognitive impairment and dementia" and "Society guideline links: Palliative care".)
SUMMARY AND RECOMMENDATIONS
●Advanced dementia is a terminal illness, and its clinical course is well characterized. Clinicians should be prepared to promote compassionate, evidence-based counseling and shared decision-making in order to avoid burdensome care that is of limited clinical benefit and not aligned with preferences. (See 'Prognosis' above.)
●Advance care planning is the cornerstone of high-quality palliative care in advance dementia. Patients with dementia and their families should be informed about what to expect at the end stage of the disease. Formal advance directives and an appointment of a health care proxy should be ascertained prior to the end stage of dementia. (See 'Decision-making support' above.)
●Provision of palliative care in advanced dementia should be guided by a preference for comfort-focused care, not estimated prognosis. (See 'Life expectancy and hospice eligibility' above.)
●When available, referral to hospice or specialized palliative care services should be considered in the care plan of patients with advanced dementia. (See 'US Medicare guidelines' above.)
●Feeding problems are the most common clinical complication and source of treatment decisions in advanced dementia. Conservative measures that may improve oral intake include altering the texture of food and offering finger foods, smaller portions, favorite foods, and nutritional supplements. When feeding problems persist despite conservative measures, we suggest continued oral feeding by hand rather than tube feeding for nutritional support (Grade 2C). (See 'Eating problems' above and 'Oral versus tube feeding' above.)
●Recurrent infections are the second most common clinical complication. There is excessive misuse of antimicrobials in advanced dementia. Clinicians should ensure that minimal criteria to suspect an infection are present before initiating testing and treatment, and antimicrobial use should be aligned with patient and family or caregiver goals of care. (See 'Infections and fever' above.)
●Hospitalizations are traumatic for patients with advanced dementia and often unnecessary. Hospital transfers should be avoided unless clearly needed to achieve the desired goals of care. (See 'Hospitalization' above.)
●Chronic daily medications can be discontinued when they no longer have clear benefits for patients with advanced dementia. (See 'Continuation of anti-dementia and other chronic medications' above.)
