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Care of patients with advanced dementia

Care of patients with advanced dementia
Literature review current through: Jan 2024.
This topic last updated: Apr 05, 2023.

INTRODUCTION — As the population ages, the overall burden of advanced dementia is increasing worldwide. In the United States in 2022, an estimated 6.5 million individuals over 65 years of age had Alzheimer disease (AD), a number that is expected to reach 12.7 million by 2050 [1,2]. AD was the sixth leading cause of death among decedents >65 years in 2017 [3]. Costs attributable to their care range between USD $157 and $215 billion and are expected to more than double by 2040 [4].

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.

Despite the evident magnitude of the problem, research to guide the management of advanced dementia has been somewhat limited, with few randomized clinical trials in the field [5].

This topic will review aspects of care that are specific to patients with advanced dementia. Other management issues in patients with dementia are discussed separately. (See "Management of neuropsychiatric symptoms of dementia" and "Management of the patient with dementia".)

PROGNOSIS AND CLINICAL DECISION-MAKING

Clinical course — Advanced dementia typically refers to a state of profound physical and cognitive disability that is the result of a variety of neurodegenerative diseases, the most common of which is Alzheimer disease (AD).

The Global Deterioration Scale (GDS) describes the clinical progression of dementia [6]. Scores range from 1 to 7, with higher scores indicating greater dementia severity. The time course of progression through various stages is quite variable.

There is no single clinical definition of advanced dementia. Stage 7 of the GDS provides one 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 [7]. Other studies use a score of 7 or higher on the Functional Assessment Staging (FAST) scale (table 1) to identify patients with advanced dementia.

The last stage of life in advanced dementia is characterized by a prolonged trajectory of severe disability [8]. One cohort study followed 323 nursing home residents with advanced dementia [9]. Key findings included:

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.

Other studies have also identified risk factors for early (six-month) mortality; these include infections (particularly pneumonia), pressure ulcers, immobility, malnutrition, indwelling urinary catheters, and comorbid systemic disease [10-12].

Predicted life expectancy — 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) [13].

Life expectancy is also the basis to determine access to the United States Medicare hospice benefit, which requires an estimated survival of six months or less [9,14]. (See 'Hospice eligibility' below.)

However, mortality risk prediction models that accurately estimate survival in advanced dementia have proved elusive [12,15-20].

In one rigorous effort, the Minimum Data Set [21] was used to create the Advanced Dementia Prognostic Tool (ADEPT), a 12-item additive score that includes 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 [22]. 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 United States Medicare hospice eligibility guidelines, which had the same specificity but a lower sensitivity (20 percent) [15]. (See 'Hospice eligibility' below.)

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.

Health care proxies – Decision-making should follow an ethical framework reflecting a balance of benefits and burdens, and respect for autonomy [23]. 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, when possible, their decisions should reflect their perceptions of the patient's wishes as guided by the steps for substitute decision-making [24]. (See "Advance care planning and advance directives", section on 'Surrogate decision-makers'.)

Goals of care – Treatments received by patients with advanced dementia should align with their desired primary goals of care often as interpreted or perceived by the surrogate. The goal may reflect a wish to receive all available medical treatments, with the goal of living as long as possible. By contrast, the goal may reflect a wish to receive only treatments that relieve distressing symptoms, with the goal of maximizing comfort. Somewhere in between is the option of receiving potentially curative but conservative treatments (ie, oral antibiotics), with the goal of returning to the 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 [9,25].

These approaches are not necessarily mutually exclusive. 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 [9,26-31]. 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 [9,32,33].

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 [33,34]:

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".)

Discuss goals of care. These conversations should focus on the individual's values and preferences and provide a foundation for decision-making when future complications arise, both expected and unexpected. (See 'Framework for decision-making' above and "Discussing goals of care".)

Revisit this conversation, as the goals of care are likely to change along with the progression of the disease.

Establish directives in writing, including formal appointment of a health care proxy. (See "Advance care planning and advance directives", section on 'Specific documents for health care decision-making'.)

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. (See 'Clinical course' above.)

In one 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 [9].

Solicit specific treatment preferences (advance directives) before complications arise, if possible. Common issues that often arise in the management of advanced dementia include admission to a supervised health care setting (nursing home), placement of a feeding tube, and hospitalization.

A lack of specific directives limiting aggressive care (eg, do not resuscitate, do not hospitalize) has been associated with greater use of feeding tubes [35,36], more terminal hospitalizations [26,29,37,38], more aggressive care for pneumonia [39], higher health care expenditures [28,29], worse family or caregiver satisfaction with end-of-life care [40], poorer family mental health outcomes [41,42], and lower use of hospice [43].

Consider using a structured conversation guide and written materials tailored to patients and families with dementia [32,44]. Publicly available online resources include printable guides developed by The Conversation Project [44].

Limited evidence suggests that structured interventions, such as palliative care consultation or decision aids, may be of benefit in patients with advanced dementia [45,46]. 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 [46]. Similarly, in another cluster randomized trial, an advance 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) [25]. While rates of advance 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).

Hospitalization — Advance directives regarding hospitalization are an important example of advance care planning.

Hospitalization is common in patients with advanced dementia at the end of life and in many cases is avoidable. Approximately 16 percent of United States decedents dying from dementia die in hospitals [47], and nursing home residents with advanced dementia experience an average of 1.6 hospital transfers in the last 90 days of life [48]. 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 [37]. 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 [39,49,50].

Hospitalizations are traumatic and associated with worse end-of-life outcomes among patients with advanced dementia [26,51]. 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 [48].

For the majority of patients with advanced dementia for whom comfort is the priority, hospitalization is seldom consistent with this goal, with rare exceptions (eg, hip fracture) [9,52]. 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.

HOSPICE AND PALLIATIVE CARE — Hospice care provides medical care and support to a patient with a limited prognosis from a serious medical illness and their family/loved ones, with a focus on quality of life rather than life prolongation or cure. While hospice programs are beneficial, they are not a prerequisite for palliative care, which is appropriate in all patients with advanced dementia when consistent with the patient's goals of care. (See "Hospice: Philosophy of care and appropriate utilization in the United States", section on 'Distinction between hospice and palliative care'.)

Benefits of hospice and palliative care approach — Hospice referral or palliative care consultation should be included in the treatment options for patients with advanced dementia and their families. Although hospice has historically underserved patients dying with dementia, utilization in this population is increasing [2,53].

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 nonhospice patients) [54], a higher probability of regular treatment for daily pain (44 versus 27 percent) [43,55], and greater family and caregiver satisfaction with care [43,56,57].

Palliative care consultation to persons outside of hospice care also appears to have benefit. In one study of Medicare data from 21 nursing homes, nursing home residents with dementia who had palliative care consultations were somewhat less likely to be hospitalized or transferred to the emergency department in the 30 days before death [58]. In a randomized study of hospitalized patients with advanced dementia, families of patients who received a palliative care consult were more likely to opt for hospice care (25 versus 3 percent) and make decisions to avoid rehospitalization (13 versus 0 percent) [59].

Hospice eligibility — In the United States, access to hospice is determined by Medicare eligibility guidelines, which are predicated on a predicted life expectancy of ≤6 months. 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' and families' preference to focus care on maximizing comfort and quality of life.

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 [60]: 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).

FEEDING AND NUTRITION — The onset and progression of eating problems is a hallmark of advanced dementia, and nutritional support is one of the most common treatment decision faced by proxies of patients with advanced dementia [61].

Causes and evaluation — Eating problems in patients with advanced dementia are often multifactorial. Contributors include oral dysphagia (manifest by pocketing food in the cheeks 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 new or worsened dysphagia caused by a stroke typically have acute neurologic signs and symptoms that extend beyond the dysphagia, such as dysarthria, asymmetric facial or limb weakness, or new aphasia. Easily reversible causes of eating problems should be addressed, such as constipation or dental problems.

Improving oral nutrition — 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 using nutritional supplements [62]. Many patients with dementia ultimately require assisted or hand feeding when they can no longer feed themselves.

Consultation by an occupational therapist, speech and language pathologist, or nutritionist is suggested in more functional patients to help assess and implement appropriate 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 [62]. 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 patients with advanced dementia 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).

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 [63], the Canadian Geriatrics Society [64], and the American Board of Internal Medicine's Choosing Wisely Campaign [65]. The best available evidence fails to demonstrate any health benefits of tube feeding in advanced dementia, and there are risks associated with the intervention as discussed below [23,66-68].

While oral feeding is increasingly preferred, decisions should be individualized. To facilitate decision-making, families and caregivers should be counseled that eating problems are expected in the final stage of dementia. With that understanding, providers should ascertain the main goal of care and present the treatment option that best aligns with that goal. Previously expressed wishes of an individual regarding tube feeding should be ascertained through review of advance directives and discussion with surrogate caregivers, and incorporated into the care plan [63]. 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, surrogate decision makers 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) [69]. The decision aid used in this study is available online through the Ottawa Hospital website.

Oral feeding – Ongoing hand feeding rather than tube feeding is the preferred approach to nutritional support in patients with advanced dementia.

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. However, conscientious hand feeding is labor intensive, requiring approximately 45 to 90 minutes per day [70]. 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'.)

Tube feeding – The alternative approach, 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 [71,72].

While there have been no randomized trials of tube feeding versus continued oral feeding in advanced dementia, the available evidence from observational studies does not suggest that enteral tube feeding achieves these outcomes. A 2021 systemic review (14 observational studies) found no evidence of benefit for survival, quality of life, pain, behavioral and psychological symptoms, nourishment, or improved family or carer outcomes such as depression, anxiety, carer burden, or satisfaction with care [73]. This review and other reviews also reported evidence suggesting that tube feeding may increase the risk of pressure ulcers and pneumonia [68,74].

Families and caregivers should be apprised of the risks associated with PEG tube placement (see "Gastrostomy tubes: Complications and their management"). In addition, some studies have drawn attention to specific burdens of PEG tubes in patients with advanced dementia:

Tube dislodgment, 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 [37].

Agitated 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 [75].

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 [OR] 0.70) [76].

INFECTIONS AND FEVER — Infections and fever are 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 [77]. 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 [77-79]. Much of this use may be inappropriate, however, as antimicrobials are often started without adequate clinical evidence of an infection [80-84].

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 [85]. 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 [86]. 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 [87]. 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 [88], potential discomfort associated with parenteral administration [51], and drug interactions [89]. Detailed information on drug interactions can be found in the drug interaction program within UpToDate.

Management of suspected pneumonia — The evaluation and treatment of suspected infections in advanced dementia should be guided by the goals of care. One treatment decision is whether to administer potentially curative antimicrobials or to institute solely palliative measures (eg, oxygen, acetaminophen). Another management decision includes whether to refer the patient for hospitalization. (See 'Hospitalization' above.)

When antimicrobial use is consistent with the goals of care, a clinical assessment should ensure that antimicrobial therapy is indicated. The clinical assessment of suspected pneumonia is not straightforward in a patient with advanced dementia; the patient may not be able to provide a history or describe symptoms, and diagnostic tests are often less readily available. At the same time, empiric use of antimicrobials is discouraged as discussed above. 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 that has been adapted for use in advanced dementia (table 3) [81]. In one study, only 44 percent of suspected infectious episodes treated with antimicrobials in nursing home residents with advanced dementia met these criteria [87].

Once the decision to initiate antimicrobials is made, the need for confirmatory tests (eg, chest radiograph, white cell count, urine specimen by catheterization) should be balanced by the potential burden of obtaining the investigations in these terminally ill patients.

In the absence of 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. As an example, in one observational study of 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) [39]. 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. 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 [90]) compared with untreated residents. These data, while limited, 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.

Specific recommendations for the management of pneumonia are provided separately. (See "Overview of community-acquired pneumonia in adults", section on 'Treatment' and "Approach to infection in the older adult", section on 'Pneumonia' and "Aspiration pneumonia in adults".)

Management of suspected urinary tract infections — Urinary tract infections (UTIs) are a common reason for antimicrobial misuse. 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 [83].

The diagnosis of a UTI requires symptoms, together with positive findings on urinalysis and urine culture. In patients with advanced dementia, however, urine specimens are commonly positive in the absence of infection [83], and antimicrobial therapy is not warranted for asymptomatic bacteriuria [81,91]. The minimal clinical criteria to initiate antimicrobials in the nursing home population endorsed by SHEA provide a useful guide that has been adapted for use in advanced dementia (table 3) [81].

Among patients without indwelling urinary catheters, who are at a much lower risk of having a UTI than catheterized patients, SHEA criteria (table 3) require fever plus another symptom or sign as minimal clinical criteria to start antimicrobials [81]. 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 [83], 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 [83]. In most instances, therefore, both fever and mental status change should be present 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).

However, the benefit is uncertain, as antimicrobial treatment for suspected UTI may not impact overall survival [92]. Other issues specific to the evaluation and treatment of UTI in older adults are discussed separately. (See "Approach to infection in the older adult", section on 'Urinary tract infection'.)

The specific antimicrobial management of UTI is discussed separately:

(See "Acute simple cystitis in adult and adolescent females".)

(See "Acute simple cystitis in adult and adolescent males".)

(See "Acute complicated urinary tract infection (including pyelonephritis) in adults and adolescents".)

(See "Catheter-associated urinary tract infection in adults".)

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.

OTHER MANAGEMENT ISSUES

Pain and symptom management — Distressing symptoms in advanced dementia are common. In one 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 [9]. 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) [93].

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 [90,94,95]. 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) [94,96]. PAINAD includes assessment of five different domains: breathing, negative vocalization, facial expressions, body language, and ability to be consoled. Scores range from 0 to 10, with higher scores indicating more severe pain. (See "Approach to symptom assessment in palliative care", section on 'Pain' and "Palliative care: Nursing home", section on 'Assessing pain in patients with impaired cognitive function'.)

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" and "Ethical considerations in effective pain management at the end of life" and "Palliative care: The last hours and days of life", section on 'Pain'.)

Nonpharmacologic and pharmacologic approaches to the management of agitation in patients with dementia are discussed separately. (See "Management of neuropsychiatric symptoms of dementia".)

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 [97].

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 [98]. (See "Female urinary incontinence: Treatment", section on 'Cognitive impairment and functional incontinence' and "Urinary incontinence in men", section on 'Functional limitations'.)

Strategies for managing urinary incontinence in the nursing home setting are discussed in detail separately. (See "Medical care in skilled nursing facilities (SNFs) in the United States", section on 'Urinary incontinence'.)

Discontinuing 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.

Cholinesterase inhibitors and other antidementia drugs — There is very limited evidence to support initiating 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. Therapies targeting amyloid plaque that are approved for treatment in early AD are specifically contraindicated in advanced AD. All of these therapies are discussed separately. (See "Treatment of Alzheimer disease", section on 'Cholinesterase inhibitors' and "Treatment of Alzheimer disease", section on 'Advanced disease'.)

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). Cholinesterase inhibitors should be tapered over a two- to three-week period. (See "Cholinesterase inhibitors in the treatment of dementia", section on 'Other reasons for discontinuation'.)

Other medications — A consensus panel of experts has identified medications that are inappropriate in advanced dementia [99,100]. Chronic daily medications assessed to be "never appropriate" include lipid-lowering agents, cytotoxic chemotherapy, immunomodulators, leukotriene inhibitors, antiestrogens, sex hormones, hormone antagonists, and antiplatelet agents (except aspirin). Those assessed to be "rarely appropriate" include digoxin, clonidine, hydralazine, antiarrhythmics, mineralocorticoids, bladder relaxants, tamsulosin, antispasmodics, bisphosphonates, and anticoagulants.

In studies of patients with advanced dementia in nursing homes, 54 to 86 percent of patients receive at least one of these medications [101,102]. In one of the studies, drugs of questionable benefit accounted for 35 percent of the total average 90-day medication expenditures [101].

An overall discussion of deprescribing is provided separately. (See "Deprescribing".)

END-OF-LIFE CARE — It can be helpful for families to identify when death may be imminent. Clinical signs can be used to identify patients who are actively dying (table 5).

Other aspects of care in the last hours and days of life are discussed separately. (See "Stopping nutrition and hydration at the end of life" and "Palliative care: The last hours and days of life".)

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

Clinical features and course – Advanced dementia typically refers to a state of profound physical and cognitive disability that is the result of a variety of neurodegenerative diseases, the most common of which is Alzheimer disease (AD). The clinical stages of dementia are well described, but the time course of progression is variable. (See 'Clinical course' above.)

Advance care planning – Advance care planning is the cornerstone of high-quality care in advanced dementia. Patients with dementia and their families should be informed about what to expect at the end stage of the disease. Goals of care should be ascertained and re-evaluated as the patient progresses. Formal advance directives and an appointment of a health care proxy should be ascertained prior to the end stage of dementia. (See 'Advance care planning' above.)

Hospice and palliative care – When available, referral to hospice or specialized palliative care services should be considered in the care plan of patients with advanced dementia. Although eligibility for formal hospice programs is often based upon estimated life expectancy, provision of palliative care should be guided instead by a preference for comfort-focused care. (See 'Hospice and palliative care' above.)

Feeding and nutrition – Feeding problems are a 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 'Feeding and nutrition' above.)

Infections – Recurrent infections are a common complication of advanced dementia but may be challenging to diagnose and appropriately manage. To avoid misuse of antimicrobials, clinicians should ensure that minimal criteria to suspect an infection are present before initiating testing and treatment (table 3), and antimicrobial use should be aligned with patient and family or caregiver goals of care. (See 'Infections and fever' above.)

Discontinuing chronic daily medications – Chronic daily medications should be discontinued by tapering them, if possible, when they no longer have clear benefits for patients with advanced dementia. (See 'Discontinuing chronic medications' above.)

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Topic 86250 Version 38.0

References

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