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Key Success Factors in Managing End Stage DementiaA Primer for Mental Health Service for Memory UnitsSummarized from: Caring for the Patient with End Stage DementiaRobin J. Sekerak, MD, FAAPMR, FAFRM (RACP) Jonathan T. Stewart, MD, DFAPA, AGSFIntroductionDementia is exceedingly common among the elderly population, affecting about 14% of individuals aged 71 and older and about 34% of those over 90. Alzheimer’s disease is the sixth leading cause of death in the United States. The most common causes of dementia are Alzheimer’s disease, Lewy body dementia, and vascular dementia. Median survival for a patient with dementia is approximately 5 years from diagnosis. Approximately two-thirds of nursing home residents with dementia did not receive hospice care at the end of life. This is a painful legacy for families and a major predictor of complicated grief. There are numerous reasons for the slow acceptance of hospice care for terminal dementia. Many healthcare professional find it difficult to view dementia as a terminal illness. The illness is mostly characterized by cognitive impairment leading to cardiopulmonary arrest in the same way as end stage organ failure, for instance. Severe dementia may be conceived of as a “brain failure”, just as severe cardiomyopathy is conceived of as “heart failure”. 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. There are four important components of end-of-life care for patients with dementia: (1) prognostication, the greatest barrier to hospice care; (2) care planning strategies to ensure patients 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 such as behavioral problem, and sleep disturbances; and (4) aiding patients and family members through bereavement.PrognosticationThe 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. There is no gold standard for prognostication. The criterion for the 6 month prognosis includes stage 7 of the Functional Assessment Staging Tool (FAST).Table 1. NHPCO Criteria for Hospice EligibilityFAST stage 7Dependent in al ADLsIncontinent of bladder and bowelSpeech limited to no more than 6 usable wordsOne or more of the following complications:Aspiration pneumoniaUpper urinary tract infectionRecurrent fever or infection after a course of antibioticsSepsisStage III or IV pressure ulcersWeight loss >10% of body weight within 6 monthsAlbumin <2.5g/dL (reference range, 3.5-5 g/dl)The mortality Risk Index, a weighted composite score of 12 items derived from the Minimum Data Set was shown to have a greater predictive value that the NHPCO criteria.How to Help Those Who Cannot Always Help Themselves Find out what is going on with the resident, ask these questions before giving any medicine or major intervention:Do they have an infection?Do they have pain?Have their medicines been changed recently?Are they constipated?Are they depressed?Are they nervous, scared?Are they lonely?Are they bored?Do they feel like they have lost control of their lives?Did someone upset them?Are they hungry?Top 5 Reasons Residents Refuse Rehab Therapy:Pain – Our pain management program addresses all aspects of chronic pain: the physiological, the emotional, and the mental.Hopelessness – We can treat the underlying causes, such as depression, confusion, and/or social withdrawal.Feeling Overwhelmed – Anxiety and the inability to cope can easily be treated with our program.Fatigue – Our skilled clinicians provide a series of motivational therapies to allow residents to remain active in rehab.Physical Impairments – We can redirect patient’s’ focus and provide encouragement, as well as motivating them to achieve success.Care Planning StrategiesPatient and family education should start as early as possible. 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. Only 18% of families had ever discussed prognosis with a physician. The problem is that advance directives are often signed hastily, without an understanding of the true benefits and risks associated with care. The most useful and non-threatening technique is the “ask-tell-ask” method (ie, asking the patient or family member what he/she understands and what he/she want to know throughout the conversation). Often, a time-limited trial of an intervention or a compromise intervention (eg, treating for pneumonia but not hospitalizing) can be negotiated.Addressing Complications in Patients with DementiaComplications and conditions may manifest or worsen throughout the course of dementia. Before selecting an intervention, one important question that families and healthcare provider 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 is to enhance quality, not quantity, of the remaining life – is kept in perspective.1.Behavioral ProblemsBehavioral problems are common and become even more prominent in patients with even more advanced dementia. Problems often subside for patients at this stage while passivity and apathy intensify; lethargy seems far more common than agitation during these final few weeks. Behavioral problems can be relatively chronic or can arise acutely. The “Seven I’s”, which is a useful mnemonic device for identifying the source of acute behavioral change in patients with dementia is shows in Table 2.Table 2. Determining the Source of Acute Behavioral Change in DementiaIatrogenic (consider anticholinergics, sedatives, opioids, others)Infection (pneumonia, urinary tract, cellulitis, others)Injury (often a covert fall, also consider any source of pain)Illness (any acute illness or exacerbation of a chronic illness)Impaction (fecal)Inconsistency (major change in the environment, relocation, new people, others)Is the patient depressed?How is the Resident Acting?What Can You Do?Stage A – Non-VerbalHelp them relax by trying to:Can’t sit stillCryingSadShakingGive them positive attention: Smile, show concernAsk them if anything is hurtingGive them something to do to help them relaxShow them you careStage B – Verbal AggressionHelp them to calm down by:Arguing a lot more than usualStubbornCussingYelling/ScreamingAngryDon’t get too closeMove other residents away from themGive them cool down time and check on them laterTell the nurseDO NOT ARGUE or TOUCHStage C- Physical AggressionHelp them to settle down by:HittingBitingGrabbingPinchingDon’t get too closeRemove any objects they can use to hurt themselves and/or othersMove them away from other residentsGive them cool down time and check on them laterTell the nurseDO NOT ARGUE or TOUCHStage D – Inappropriate BehaviorHelp them to stop unwanted behaviors in public by:Sexually inappropriate behaviors in front of othersUsing inappropriate sexual LanguageSay NO or STOPDon’t get too closeDO NOT YELL AT THEMManaging Alzheimer’s Patients: Remember the Five R’sReassureReengageRepeatRedirectRestrictAgitation is a sign of patient distress that should be addressed promptly. 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 notion. Distress may manifest as screaming, restlessness, aggressive behavior, a distressed facial expression, or a variety of other signs. The differential diagnosis is broad. 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. Some authors advocate an empirical trial of opioids or other analgesics if no obvious source of distress is found.Resistance to hands on care is especially common in patients with severe dementia. 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. Helpful techniques include softly and gently explaining what is about to be done, distracting the patient with something enjoyable, approaching him or her from 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 non pharmacologic. 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. 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.Depression is also common in most dementias and many authors believe that it may persist and ultimately manifest as nonspecific screaming or restlessness.2.Sleep DisturbancesSleep disturbances are common in persons with dementia, and generally worsen as the dementia progresses. This is related to the disintegration of normal diurnal rhythms. 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. Patients may respond favorably to bright light (preferably sunlight) during the day. 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 remazepam or zolpidem, can be prescribed in these individual if necessary to improve overall quality of life.3.DeliriumMost acute behavioral changes in severe dementia are attributable to a superimposed delirium, as dementia is a strong independent predictor of delirium. Delirium is characterized by acute onset and a fluctuating course, a decrement in attention. Agitated delirium is an unpleasant state for patients and it is frightening to their families, however, so the delirium itself needs to be addressed. Benzodiasepines are associated with worse behavioral outcomes in patients with delirium and are best avoided. Other important measures include avoiding excessive medical hardware. 4.PainSelf-report is the gold standard for the assessment of pain, but this ability is progressively lost in individuals with dementia. Long-standing pain does not decrease with advancing dementia, although the ability to report and to understand pain does. Patients will likely be unable to effectively express, describe, or localize their pain.Unrelieved pain in dementia is associated with increased use of psychotropic. 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. It is essential to emphasize schedule analgesics in this population, as these patients are unable to ask for as-needed medications. 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.5.Anorexia and CachexiaAdvanced dementia inevitably leads to anorexia, weight loss, and cachexia. 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. The lack of benefit of tube feeding pin patients with dementia has been overwhelmingly demonstrated over the past two decades. Healthcare providers should describe anorexia and cachexia as preterminal markers that are inherent to end-stage dementia and are unresponsive to artificial nutrition. Attempts should be made to optimize oral feeding. This has comfort benefits for both the patient and the family 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. A pleasant, non-distractive environment is best for oral feeding, and many patients feel less threatened if fed from the side. Involving family with the feeding process may give them a sense of control and that they are “doing something”. A limited trial of appetite stimulants (eg, dronabinol, megestrol) may be an option for some patients with advanced dementia. They may improve quality of life. Conflicting and misleading language from healthcare providers, religious and political groups, and the legal system further complicates matters and may provoke distrust.6.Other SymptomsSeizures may occur late in the course of Alzheimer’s disease, with an incidence reportedly as high as 20% Dyspnea is common in patients with dementia during the last weeks of life. 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.Constipation is commonly noted in end-stage dementia, often related to a combination of inadequate hydration, inactivity, and medication effects. Constipation can cause significant discomfort, restlessness, anorexia, and urinary retention. A combination of osmotic and stimulant laxatives is generally helpful. Pressure ulcers are also common in individuals with end-stage dementia. Prevention is of paramount importance. 7.Treating Intercurrent IllnessesWhen treating intercurrent illness in end-stage dementia, the goals will be highly variable and depend on several factors, including the patient’s life expectancy. Symptom management or, at most, a noninvasive approach is usually appropriate. 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. Recurrent pneumonia frequently occurs in this population, and is the most common immediate cause of death. Many studies show little or no survival benefit to antibiotics or the use of antibiotics to improve dyspnea. Importantly, intravenous hydration is associated with increased dyspnea and suffering in the context of recurrent pneumonia.Urinary tract infections (UTIs) are common in patients with end-stage dementia, but asymptomatic bacteriuria is even more common and is often over treated. Parenteral hydration is rarely maintained in the last weeks of life.The grieving process is an especially intense experience in the cases of individual with dementia. The family experiences numerous smaller “deaths” as the dementia progresses. Some family members will feel guilty about not grieving more at the funeral or about having wished that death would come sooner. (See Senior Psych Care information on grieving and mourning)There is often conflict about the interpretation of wishes that are rarely adequately covered in any advance directive document. 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 be helpful, and some families will have already established a relationship with a dementia support group. (See Senior Psych Care information on Dementia and Decision making and Do Patients Want to Know they Have Dementia)Healthcare providers should remain attentive for signs of complicated grief. These may include prolonged feelings of guilt or anger, negative reminiscing, nightmares, self-destructive or suicidal ideation, or symptoms of depression. 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.ConclusionWith 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 and work with your professional team and ask for help from friends and family. References available upon request. ................
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