Caring for the Patient With End-Stage Dementia

Affiliations: ¹ABI Rehabilitation, Ltd, Auckland and Wellington, New Zealand ²Laura Fergusson Trust, Inc, Christchurch, New Zealand ³Geriatric Psychiatry Service, James A. Haley Veterans’ Hospital, Tampa, FL ⁴Department of Psychiatry and Behavioral Neurosciences, Morsani College of Medicine, University of South Florida, Tampa, FL

Abstract: Patients with end-stage dementia remain underserved by hospice services despite overwhelming evidence that dementia is a terminal illness. Consequently, many patients with end-stage dementia do not receive the care they deserve and would want. This article reviews four key components to ensuring patients with end-stage dementia receive proper care. First, the challenge of prognostication, a leading barrier to hospice care, is reviewed. Second, care planning strategies (eg, advance directives) are examined. A good, open relationship between the clinician and the patient’s family is of paramount importance to prevent the use of aggressive and undesirable interventions, such as tube feedings. Third, strategies for managing complications of dementia, such as behavioral problems, sleep disturbances, and pain, are reviewed. These and other complications must be adequately addressed to reduce distress and improve quality of life. Finally, strategies for helping patients and families through the bereavement process are examined, as skillful end-of-life care will leave a legacy of dignity and peace for the family.

Key words: Advance directives, agitation, behavioral problems, bereavement, delirium, dementia, end-of-life care, hospice, prognostication, pain, tube feeding.
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Dementia is exceedingly common among the elderly population, affecting about 14% of individuals aged 71 and older and about 34% of those over 90.¹ Alzheimer’s disease is the sixth leading cause of death in the United States.² The most common causes of dementia (ie, Alzheimer’s disease, Lewy body dementia, vascular dementia) are irreversible and, although clinically heterogeneous early on, lead inexorably to a uniform terminal state of profound cognitive impairment, functional dependency, frailty, cachexia, and recurrent serious health problems, such as pneumonia.³ Median survival for a patient with dementia is approximately 5 years from diagnosis.³ As such, dementia must be considered as much of a terminal illness as advanced cancer or heart failure, yet there is ample evidence that individuals with end-stage dementia receive suboptimal end-of-life care and often experience unrelieved suffering.⁴

According to a 2005 study, approximately two-thirds of nursing home residents with dementia did not receive hospice care at the end of life.⁵ Beyond the consequences for the patient, unrelieved suffering is a painful legacy for families and a major predictor of complicated grief. Families are especially appreciative of hospice care for these patients. When there has been resistance to the notion of having a “stranger” providing care, we have often had success reframing this as a way of “subcontracting” the difficult and frustrating aspects of care, enabling the family member’s focus to be on acting as a spouse or child again rather than a caregiver.
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There are numerous reasons for the slow acceptance of hospice care for terminal dementia. It has consistently been shown that the greatest barrier to hospice care in dementia is difficulty in prognostication (and associated difficulties with reimbursement).^6-8 While our ability to predict 6-month mortality in patients with dementia has improved over the years, it is still more difficult than for any other major terminal diagnosis. Another reason is that patients with severe dementia often manifest behaviors that are relatively unfamiliar to hospice personnel.⁸ While most difficult behaviors tend to abate during patients’ final few weeks of life, they are nevertheless often problematic throughout the last 6 months of life and may require a different skill set for the hospice staff, including assessment and management skills.

Finally, most lay people—and many healthcare professionals—find it difficult to view dementia as a terminal illness.^3,6 Despite its stereotypical end-stage picture, it is difficult to conceptualize an illness mostly characterized by cognitive impairment leading to cardiopulmonary arrest in the same way as end-stage malignancy or organ failure, for instance. Often, dementia is not mentioned as a cause of death on death certificates, and many healthcare providers view dementia as, at most, a predisposing factor for pneumonia.⁶ Severe dementia may be conceived of as “brain failure,” just as severe cardiomyopathy is conceived of as “heart failure.” Neither illness leads to death per se, but both ultimately progress to a cascade of recurrent illnesses and multiple organ failures.

The failure to view dementia as a terminal condition not only deprives the patient and family of compassionate end-of-life care, but can also result in overly aggressive treatments that would never be considered in more traditionally viewed terminal conditions, such as cancer or heart failure. This article provides an overview of four important components of end-of-life care for residents with dementia: (1) prognostication, the greatest barrier to hospice care; (2) care planning strategies to ensure residents with end-stage dementia receive the care they deserve and would want at the end of life; (3) addressing the many distressing complications that may arise or worsen as dementia progresses, such as behavioral problems, sleep disturbances, and pain; and (4) aiding residents and family members through bereavement.

Prognostication

As mentioned previously, prognostication remains the most significant challenge to initiating hospice care among patients with dementia. Studies show that dementia is the terminal diagnosis with the greatest variability around the median survival time.⁹ Sachs and colleagues⁶ have suggested that the true trajectory of end-stage dementia is not one of steady decline, but rather one of recurrent health crises and hospitalizations, much like end-stage chronic obstructive pulmonary disease. As such, it is difficult to predict which health crisis will ultimately prove fatal.

There is no gold standard for prognostication in dementia. The most commonly used criterion for 6-month prognosis is that of the National Hospice and Palliative Care
Organization (NHPCO), which includes both stage 7 of the Functional Assessment Staging Tool (FAST; a scale used to measure dementia severity), and the presence of at least one of several comorbidities (Table 1).¹⁰ These criteria have been criticized, however, and seem especially limited if patients do not progress linearly along the FAST scale.^7,11 The Mortality Risk Index, a weighted composite score of 12 items derived from the Minimum Data Set, was shown in a 2004 study to have greater predictive value than the NHPCO criteria in a large nursing home cohort, although it has not been validated in non–nursing home populations.¹²

Numerous factors associated with poor prognosis have been identified, including severity of dementia at initial diagnosis, rate of cognitive deterioration during the first year after diagnosis, male sex, frontal release signs, gait disturbance, falls, congestive heart failure, and diabetes.¹³ In addition, pneumonia, fever, and hip fracture seem to be especially ominous predictors, and a small study in 2000 reported that individuals with dementia are generally more likely to die with any given illness than cognitively intact persons.¹ 

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Care Planning Strategies

Patient and family education should start as early as possible after a dementia diagnosis and must continue throughout the course of the patient’s illness. Early education is essential, as dementia is unique from other terminal conditions in that patients with dementia quickly lose their capacity to participate in the care planning process. Further, it has been documented that early education decreases the risk of overly aggressive interventions at the end of life, such as hospitalization and tube feeding.¹⁵ Regrettably, meaningful advance care planning is usually not addressed until far too late in the course of the patient’s illness, and it is rare for the grave (and fundamentally terminal) prognosis of dementia to have been discussed. In one 2009 study, for example, only 18% of families had ever discussed prognosis with a physician.¹⁵

When conversations are initiated early in the course of the condition, the healthcare provider can educate and prepare the patient and family, explore their values and preferences, and facilitate an advance directive. The problem is that advance directives are often signed hastily, without an understanding of the true benefits and risks associated with care. Important scenarios, such as tube feeding and do-not-hospitalize orders, are rarely addressed during conversations about advance directives. These discussions should occur well before the occurrence of a medical crisis. Further, the information that the patient and family are willing to hear will vary greatly during the course of the patient’s disease. Often, the most useful and nonthreatening technique is the “ask-tell-ask” method (ie, asking the patient or family member what he/she understands and what he/she wants to know throughout the conversation). This provides these individuals with a level of control over the situation and a sense of safety.¹⁶

During these conversations, families will often request “life-prolonging care” or “doing everything possible” for the patient. It is vital to explore the feelings and beliefs behind these requests. For example, aggressive care may symbolize love for the patient or may be a response to the fear of being widowed or orphaned; the discussion should be gently steered toward honoring the patient’s wishes and not inflicting any meaningless suffering. Often, a time-limited trial of an intervention or a compromise intervention (eg, treating for pneumonia but not hospitalizing) can be negotiated. Defining an end point for an intervention often meets the needs of the family while minimizing the patient’s suffering.

Addressing Complications in Patients With Dementia

Many complications and conditions may manifest or worsen throughout the course of dementia that need to be addressed to ensure quality of life. When managing these conditions, family members must be consulted. What follows is a review of several of the most common conditions that persons with end-stage dementia may experience, along with potential interventions that can be considered to alleviate the symptoms and provide comfort. Before selecting an intervention, one important question that families and healthcare providers must consider is: “Will this intervention/treatment promote quality of life or merely prolong the dying process?” When considered in this way, the goal of care—to enhance quality, not quantity, of the remaining life—is kept in perspective. 

Behavioral Problems

Behavioral problems are common throughout the course of dementia, and these problems become even more prominent in patients with more advanced dementia.¹⁷ Most studies, however, do not include patients in the last few months of life, as behavioral problems often subside for patients at this stage while passivity and apathy intensify^8,17; lethargy seems far more common than agitation during these final few weeks. Both qualitative and quantitative changes occur with advancing dementia; for example, delusions and hallucinations seem less prominent in severe dementia, while resistance to care may be more prominent until the last few weeks or months of life.¹⁷ Behavioral problems can be relatively chronic or can arise acutely in patients with advanced dementia. Acute behavioral changes are generally indicative of a new problem. The “Seven I’s”, which is a useful mnemonic device for identifying the source of acute behavioral change in patients with dementia, is shown in Table 2.

Agitation is a sign of patient distress^3,8,17 that should be addressed promptly. This is a cornerstone of palliative care in dementia, the goal being to make the patient feel relaxed and comfortable. By definition, patients with end-stage dementia are nonverbal, and evaluation of agitation or behavioral changes will always involve a good deal of detective work. Families and nursing staff can be especially helpful, although informants can sometimes project their own feelings and preconceived notions, rather than those of the patient. Distress may manifest as screaming, restlessness, aggressive behavior, a distressed facial expression, or a variety of other signs. The differential diagnosis is broad and will depend to some extent on whether the distress is chronic or an acute change. Possibilities include fearfulness (including fearfulness of care), pain (discussed later in this article) or discomfort, constipation, an intercurrent infection or other illness, a covert injury, sensory or social deprivation, or restraint.¹⁷ Some authors advocate an empirical trial of opioids or other analgesics if no obvious source of distress is found and pain cannot be ruled out as a cause of the patient’s agitation.^8,18,19

Resistance to hands-on care is especially common in patients with severe dementia.¹⁷ This may relate to worsening apathy (whereby the patient prefers to be left alone) or to fearfulness (whereby the patient is unable to understand what is being done to him/her). The most important intervention is to limit care to the minimum required to maintain the patient’s quality of life. A daily shower or frequent changes of clothing, for example, may be too much for the patient to bear, and it is essential to explain this to his or her family. Other helpful techniques include softly and gently explaining what is about to be done, distracting the patient with something enjoyable, approaching him or her from the side rather than head-on, moving slowly, identifying the best time of day and the best-tolerated staff, and (if the patient is able to comprehend) reassuring him or her that, “as soon as we get this done, I’ll leave you alone.”

Most of the management of these behavioral problems in patients with dementia is nonpharmacologic,¹⁷ and the hospice environment seems especially conducive to this. Nevertheless, it will sometimes be necessary to manage distress pharmacologically. There are few studies of pharmacologic treatment of behavioral problems in end-stage dementia, but once other modifiable causes of distress have been addressed or ruled out, neuroleptics are probably the most effective option for fearfulness or agitation.^8,17 The use of neuroleptics is not unlike the use of opioids in hospice: start with low doses, titrating gradually until the patient is no longer in distress but not unduly sedated. Used in this manner, both typical and atypical neuroleptics are fairly well tolerated. Drug-induced extrapyramidal effects, such as pseudoparkinsonism or akathisia, occur more frequently with the older, typical agents and may dictate a change to an atypical agent. Of course, long-term adverse effects, such as tardive dyskinesia or metabolic syndrome, will not be of concern, as these patients have short life expectancies.
Often, the choice of neuroleptic is dictated by the available routes of administration.

Depression is also common in most dementias, and many authors believe that it may persist and ultimately manifest as nonspecific screaming or restlessness.^17,20 As such, and especially if there is current or has been prior evidence of depression and if no other treatable source of distress can be identified, an empirical trial of an antidepressant may be reasonable (if consistent with goals of care and with the patient’s life expectancy). In patients with a short prognosis, a stimulant such as methylphenidate may be an option.

Sleep Disturbances

Sleep disturbances are common in persons with dementia, and generally worsen as the dementia progresses.¹⁷ Much of this is related to the disintegration of normal diurnal rhythms.²¹ It is often difficult to correct this, so if the environment can tolerate the patient’s erratic sleep schedule, it is usually best to allow him or her to sleep when he or she requires it.  It is advisable to educate the family about the variety of changes in sleep seen in advanced dementia, focusing on the patient’s comfort.

Some patients may respond favorably to bright light (preferably sunlight) during the day,²¹ although this has not been studied in individuals with end-stage dementia. Other important sleep hygiene measures include provision of exercise and stimulation during the day; avoiding naps, if possible; treating pain, nocturia, and other distressing nocturnal symptoms; keeping the patient’s room cool and quiet; and using a nightlight to minimize fearful disorientation when the patient awakens. A hypnotic agent, such as temazepam or zolpidem, can be prescribed in these individuals if necessary to improve overall quality of life. Alternatively, if the patient is already taking an antidepressant or a neuroleptic, a more sedating agent can be selected instead and can be administered at bedtime.

Delirium

Most acute behavioral changes in severe dementia are attributable to a superimposed delirium, as dementia is a strong independent predictor of delirium.¹⁷ Delirium is characterized by acute onset and a fluctuating course, a decrement in attention (which is sometimes difficult to assess in patients with severe dementia), and an altered level of consciousness.¹⁷

Whether the acute problem causing the delirium should be treated depends on the goals of care, the patient’s life expectancy, and—most importantly—whether the patient’s wellbeing could be improved with treatment. In many cases (eg, pneumonia), definitive treatment will not be consistent with the goals of care. Agitated delirium is an unpleasant state for patients and it is frightening to their families, however, so the delirium itself needs to be addressed.¹⁷ Again, neuroleptics are the treatment of choice for dysphoria and fearfulness associated with delirium, and their use in these situations is similar to that described previously.¹⁷ Benzodiazepines are associated with worse behavioral outcomes in patients with delirium and are best avoided.^17,22 Terminal sedation should rarely, if ever, be necessary for delirium. Other important measures include avoiding excessive medical hardware, as patients with delirium are notorious for pulling out central lines and Foley catheters; maintaining a relatively quiet and understimulating environment; and attending to fall risk and other safety issues.

Pain

Self-report is the gold standard for the assessment of pain, but this ability is progressively lost in individuals with dementia. Numerous pain assessment scales have been developed for persons with dementia. A 2006 systematic review of 12 observational pain assessment scales concluded that the PACSLAC (Pain Assessment Checklist for Seniors with Limited Ability to Communicate) and Doloplus-2 scales were the most appropriate tools for elderly patients with severe dementia.²³ Although a pain assessment scale may be useful, it must be used as part of a comprehensive approach that includes a detailed history from family and staff and a thorough physical examination. A history of pain is especially salient in patients with dementia; long-standing pain does not decrease with advancing dementia, although the ability to report and to understand pain does.¹⁸ The identification of pain in this population starts with a high index of suspicion and good communication between the physician, staff, and family. All staff must understand that pain may be expressed as aggression, agitation, anxiety, resistance to care, depression, or withdrawal, and that patients will likely be unable to effectively express, describe, or localize their pain.^3,9,24

Unrelieved pain in dementia is associated with increased use of psychotropics, likely because pain-related behaviors are being misinterpreted.²⁵ Several studies have demonstrated a correlation between pain and behavioral problems in patients with dementia, as well as an improvement in behavior with pain relief.^8,25 Research has shown, however, that persons with dementia receive less analgesic medication than those without dementia despite a similar prevalence of painful conditions.^4,8,9,14,23 In a small study from 2000, for instance, patients with dementia and hip fracture received two-thirds less pain medications than control patients, and only 24% were prescribed routine analgesics.¹⁴ Clinicians are often reluctant to provide analgesia to frail elderly patients because of concerns of adverse effects, such as delirium, but current understanding argues against this. A 2011 study
involving both cognitively intact individuals and patients with dementia who underwent hip fracture repair found dementia and intensive care unit admission was significantly associated with incident postoperative delirium, but that opioid use was not.²⁶ It is essential to emphasize scheduled analgesics in this population, as these patients are unable to ask for as-needed medications.^14,24,25 Acetaminophen may be beneficial in adequate doses (generally 3-4 g per day in divided doses); if acetaminophen is ineffective, an opioid should be considered. Stimulant or osmotic laxatives should always be initiated with the opioid to prevent constipation in this already high-risk group. Fiber laxatives should be avoided as a rule, as these will lead to constipation if adequate oral hydration cannot be ensured. The goal should be to maintain patient comfort, and this requires closely monitored and frequent dose titration, as well as good staff awareness of the individual patient’s typical pain behaviors, and frequent communication between the staff and the family.

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Anorexia and Cachexia

Advanced dementia inevitably leads to anorexia, weight loss, and cachexia.^4,6,15,27-30 Cachexia is a complex syndrome involving proinflammatory cytokines that lead to widespread systemic changes, and is not merely the result of inadequate caloric intake. Cachexia is therefore poorly responsive to nutritional interventions, such as tube feeding.^4,27,28 Nevertheless, clinicians typically attribute weight loss to “the feeding problem” rather than to the disease itself.^4,15,29,30 The lack of benefit of tube feeding in patients with dementia has been overwhelmingly demonstrated over the past two decades.^28,31 Tube feeding does not decrease the risk of aspiration pneumonia, prolong life, reduce suffering, or improve comfort or function in individuals with advanced dementia. In fact, many studies indicate an association between the placement of percutaneous endoscopic gastrostomy (PEG) tubes and increased suffering, emergency department visits, and hospitalizations.^4,29,30,32 The American Geriatrics Society,³³ the American Dietetic Association,³⁴ and numerous other organizations have published position statements that reflect the burden and lack of benefit of tube feeding in advanced dementia.

During discussions with the patient and his or her family, healthcare providers should describe anorexia and cachexia as preterminal markers that are inherent to end-stage dementia and are unresponsive to artificial nutrition. Any discussion about artificial nutrition should include information about its associated risks and complications, its association with increased hospitalizations, the potential need for restraints, and the loss of pleasure and human contact associated with feeding.^29,35 Although such discussions should ideally be initiated while the patient can still participate, in reality they almost always occur late in the patient’s illness, during an acute hospitalization or other crisis.³⁵ It has been reported by family members that when these discussions do occur, they are often brief and are limited to the risks of the PEG placement procedure itself.³⁵ The natural course of dementia, the risks and burdens imposed by the PEG tube, the lack of evidence of either health or comfort benefits, and options other than tube feeding are seldom discussed.^30,35

Despite the poor prognosis of patients with end-stage dementia, attempts should be made to optimize oral feeding. This has comfort benefits for both the patient and the family,^29,30,32,35 and begins with a thorough assessment of the patient, including oral and swallowing assessments, and a review of his or her medications and food preferences. Emphasis on preferred and homemade foods, discontinuation of restrictive diets, sweeter or blander foods, foods with softer textures, and nutritional supplements can all be tried. Frequent meals with smaller portions (ie, 24/7 grazing) are preferable to set mealtimes. A pleasant, nondistracting environment is best for oral feeding, and many patients feel less threatened if fed from the side. In addition, some patients with advanced dementia retain a suck reflex and are able to drink from a spouted cup. Involving family with the feeding process may give them a sense of control and that they are “doing something,” and it may also help to comfort the patient. Depending on goals of care, aspiration risk can be mitigated with proper positioning, feeding method, and food textures, as well as meticulous oral hygiene. A limited trial of appetite stimulants (eg, dronabinol, megestrol) may be an option for some patients with advanced dementia. Although these agents do not improve muscle mass or function, they may improve quality of life.^27,30,32 Finally, mouth care and ice chips should be offered and human interactions and comforting touch should be continued after the patient is no longer able to eat or drink.^29,30

Among the many decisions made by families, those concerning nutrition and hydration are probably the most emotional and value-laden, and are often the most guilt-producing. Conflicting and misleading language from healthcare providers, religious and political groups, and the legal system further complicates matters and may provoke distrust. Feeding a person symbolizes love, caring, support, respect, and dignity³²; it is crucial to recognize and acknowledge this and what it means to the family. Such support of the family’s values may engender trust and allow negotiations (eg, limiting tube-feeding trials, no restraints, do not hospitalize) that minimize patient distress, also helping to alleviate emotional conflict and guilt.

Other Symptoms

Several other medical issues arise in individuals with end-stage dementia. Seizures may occur late in the course of Alzheimer’s disease, with an incidence reportedly as high as 20%.³⁶ These seizures are generally brief and easily controlled, however, with the choice of anticonvulsant often dictated by the possible routes of administration.

Dyspnea is common in patients with dementia during the last weeks of life, either due to recurrent pneumonia or to generalized weakness. As with other illnesses, dyspnea is a purely subjective experience and is not predicted by respiratory rate or by pulse oximetry. As in the case of pain, patients with end-stage dementia are unable to report symptoms of dyspnea, and a high index of suspicion should be maintained, especially in the context of recurrent pneumonia. Opioids are the treatment of choice for dyspnea, but other measures, such as providing a fan or opening a window and avoiding strong fragrances, can also be helpful.³⁷ Whether antibiotics improve dyspnea in recurrent pneumonia remains controversial.³⁸

Constipation is commonly noted in end-stage dementia, often related to a combination of inadequate hydration, inactivity, and medication effects, as in the case of opioids. Constipation can cause significant discomfort, restlessness, anorexia, and urinary retention. In addition to hydration and stopping the offending medications, a combination of osmotic and stimulant laxatives is generally helpful. The situation is more complicated in patients who are unable to take anything by mouth; in these cases, suppositories and enemas may be the only alternative, although they are often poorly tolerated.

Pressure ulcers are also common in individuals with end-stage dementia. Prevention is of paramount importance, but this can be difficult—if not impossible—in an immobile or resistive patient with poor nutritional reserves. Management of pressure ulcers is beyond the scope of this review, but the goal will often be to prevent pain rather than to promote healing.

Treating Intercurrent Illnesses

When treating intercurrent illness in end-stage dementia, the goals will be highly variable and depend on several factors, including the patient’s life expectancy, benefits versus liabilities to quality of life, and the family’s wishes. Occasionally, the goal will be recovery, but symptom management or, at most, a noninvasive approach is usually appropriate. Emergency department visits and hospitalizations rarely improve quality of life in this population. Every illness is an opportunity to further prepare and educate the family regarding prognosis and the nature of comfort care.^{4,6,7,13-15,32}

Medication administration is often challenging in end-stage dementia, as patients frequently refuse or are unable to swallow oral medications. It is best to discontinue medications that do not directly benefit quality of life. Sublingual or parenteral medications are useful, and a compounding pharmacist can be especially helpful in this population. Hypodermoclysis (the subcutaneous infusion of fluids) is an attractive option for gentle hydration, but it can also be used for medication administration. Numerous medications, including opioids, neuroleptics, and diuretics, can also be administered.³⁹

Recurrent pneumonia frequently occurs in this population, and is the most common immediate cause of death^{7,13,14,40,41} and one of the most common reasons for visits to the emergency department, hospitalizations, and other burdensome interventions.^{6,14,15,38,40,41} Many studies show little or no survival benefit to antibiotics; the use of antibiotics to improve dyspnea and overall comfort remains controversial.^38,40,41 Studies also indicate little to no survival benefit to hospitalization for individuals with dementia and pneumonia, and the emergency department can be especially distressing for them.^{6,14,15,38,40,41} Early discussion of a do-not-hospitalize order will usually avoid these concerns. Importantly, intravenous hydration is associated with increased dyspnea and suffering in the context of recurrent pneumonia.³⁸

Urinary tract infections (UTIs) are common in patients with end-stage dementia, but asymptomatic bacteriuria is even more common and is often overtreated. The decision to treat a positive urinalysis or urine culture is a clinical judgement, considering the often subtle symptoms as well as the limited evidence of the urinalysis for diagnosis,⁴² and most often warrants monitoring over time. Preventive measures for UTIs are useful, including the avoidance of indwelling catheters.

Parenteral hydration is rarely maintained in the last weeks of life. Potential burdens include fluid overload with edema or dyspnea, inability to tolerate the IV itself, and the notion of simply prolonging the dying process.^38,39 While hydration may improve alertness and interaction with loved ones in other terminal conditions, this is generally not the case in dementia.

Helping With Bereavement

The grieving process is an especially intense experience in the cases of individuals with dementia, as the condition has a far more devastating effect on the patient’s identity than other terminal conditions. The family experiences numerous smaller “deaths” as the dementia progresses (eg, the first time getting lost, the first time not recognizing loved ones, the first episode of incontinence). Much, if not most, of the grieving is done well before the patient’s death, which may be somewhat anticlimactic.^3,6,9,43 Some family members will feel guilty about not grieving more at the funeral or about having wished that death would come sooner. The family will likely have been struggling with other difficult issues as well prior to the patient’s death. By its nature, dementia leads to major role changes, with spouses and children often forced to adopt nursing or even parental roles.⁴³

There is often conflict about the interpretation of wishes that are rarely adequately covered in any advance directive document. In most cases, gentle support, clarification, and education about the wide range of normal reactions to a patient’s death are all that is needed. The process of helping families should start early—well before the patient’s death—and should include best efforts at prognostication and will involve far more listening than talking. Bereavement support groups can also be helpful, and some families will have already established a relationship with a dementia support group.

Healthcare providers should remain attentive for signs of complicated grief.⁴³ These may include prolonged feelings of guilt or anger, negative reminiscing, nightmares, self-destructive or suicidal ideation, or symptoms of depression. Many predictors of complicated grief are difficult or impossible to modify (eg, poor premorbid relationship with the patient, family conflict, substance abuse), but it should be remembered that witnessing unrelieved suffering is a highly modifiable predictor of complicated grief and lifelong distressing memories. Complicated grief is best treated by a trained bereavement counselor or other mental healthcare professional.

Conclusion

Although the medical community has come a long way from the days when terminally ill patients were told that “nothing more can be done,” perhaps we have come full circle. Long ago, when a cure was rarely possible, healthcare providers were more focused on what was possible: the presence and alleviation of suffering. Unfortunately, the palliative care movement has yet to reach the majority of individuals with end-stage dementia, and this may be our next frontier. Much has been learned about the unique problems and needs of these most vulnerable patients. With skill, forethought, and compassion, healthcare providers can ensure that patients with end-stage dementia may die with peace and dignity, leaving positive memories and a positive legacy to those they leave behind.

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Disclosures: The authors report no relevant financial relationships.

Address correspondence to: Jonathan T. Stewart, MD, Mental Health and Behavioral Sciences Service (116A), James A. Haley Veterans’ Hospital, 13000 Bruce B. Downs Blvd, Tampa, FL 33612; jonathan.stewart1@va.gov