Clinical Therapeutics/Volume 36, Number 11, 2014
Review Article
Palliative Care as a Primary Therapeutic Approach in Advanced Dementia: A Narrative Review Erin K. Zahradnik, MD1; and Hillel Grossman, MD1,2 1 2
Icahn School of Medicine at Mount Sinai, Department of Psychiatry, New York, New York; and James J. Peters Veterans Affairs Medical Center
ABSTRACT Purpose: The goal of this narrative review was to identify and summarize the ways in which palliative care could benefit patients who have advanced dementia. Methods: This case-based discussion article examines current literature on palliative care for dementia. Findings: Dementia is an incurable, progressive disease that affects millions of subjects. The prevalence has grown in the last decade and is projected to continue on this trajectory. In the later stages of dementia, subjects require increasing levels of care due to severe cognitive and functional impairment. Although the field of palliative medicine focuses on improving the quality of life of patients with lifelimiting illnesses, many patients with advanced dementia do not receive palliative care services. Implications: Palliative care has been shown to improve patient and caregiver satisfaction, quality of life, and symptom burden at the end of life. Patients with advanced dementia would benefit from increased access to palliative care. (Clin Ther. 2014;36:1512– 1517) & 2014 Elsevier HS Journals, Inc. All rights reserved. Key Words: palliative care, dementia, Alzheimer’s disease, geriatrics, geriatric psychiatry.
INTRODUCTION Dementia, regardless of subtype, is an incurable neurodegenerative disease, characterized by progressive impairment in cognition and functional status. Accepted for publication October 7, 2014. http://dx.doi.org/10.1016/j.clinthera.2014.10.006 0149-2918/$ - see front matter & 2014 Elsevier HS Journals, Inc. All rights reserved.
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Although patients may live for decades after the initial onset of symptoms, it is ultimately a terminal diagnosis. In 2012, 5.2 million people in the United States had a diagnosis of Alzheimer’s disease (AD); by 2025, that number is expected to reach 6.7 million.1 In 2010, AD was the fifth leading cause of death in Americans aged 465 years, reflecting an increase of 38.7% from 2000 to 2010.2 Worldwide, an estimated 44.4 million subjects have dementia, and by 2030, there will be a projected 75.6 million people with the disease.3 Despite the prevalence, patients with dementia are, as a whole, underrepresented within the palliative care population. Palliative care focuses on improving patients’ quality of life by alleviating the symptom burden of lifelimiting illnesses. The palliative care population includes patients who are terminally ill and have r6 months to live (hospice-eligible patients), those who are terminally ill but have a life expectancy 46 months, and those who have a life-limiting illness but are not imminently dying. Palliative care may be delivered alongside potentially curative treatments, at any stage in the disease process. Patients can receive services in outpatient clinics, nursing facilities, and hospitals, as well as at home. Palliative care has been shown to increase quality of life in patients, families, and caregivers; decrease medical costs; and reduce hospital usage.4–8 In the case of cancer, early access may extend survival.9–11 A palliative care approach to dementia moves the focus of medical care from estimated prognosis to quality of life. Currently, the goal of dementia treatment is not Scan the QR Code with your phone to obtain FREE ACCESS to the articles featured in the Clinical Therapeutics topical updates or text GS2C65 to 64842. To scan QR Codes your phone must have a QR Code reader installed.
Volume 36 Number 11
E.K. Zahradnik and H. Grossman to cure but to slow progression and alleviate symptoms that interfere with quality of life. Such symptoms include behavioral problems, functional decline, sleep disorders, and eating difficulties; these symptoms not only cause distress for patients but also negatively affect caregivers and family members. Formally introducing dementia patients to palliative care can help ameliorate such symptoms and enhance additional aspects of management, including delineating goals of care for patients, providing caregiver support, and managing long-term care planning options. A palliative approach can help reduce the medical burden placed on patients from multiple medications, procedures, and hospitalizations. It can also help patients and families explore their own expectations about the disease process and ideas of symptom management. This case-based discussion article examined the current literature on palliative care for dementia.
STAGES OF DEMENTIA AND IMPACT ON TREATMENT DECISIONS In its early to moderate stages, dementia is often seen as a chronic syndrome, rather than as a primary lifelimiting disease. The consequence of this perception is that medical decisions are made in isolation, without consideration of how treatments may impact the specific vulnerabilities of a patient with dementia. In particular, dementia (especially AD) is associated with cognitive impairment, memory loss, and problems with language expression and comprehension, all of which can have significant effects on treatment outcomes. When a patient with a life-limiting cancer diagnosis is being considering for a medical treatment, the presence of the cancer would prompt a number of questions. How will the treatment affect the cancer? How will the presence of cancer impact recovery from or tolerability of the procedure? What is the patient’s overall prognosis, and how does that influence the feasibility of the particular treatment? Similarly, in patients with dementia, there should be a consideration of staging: patients with early-stage AD are typically able to reason through issues of some complexity and make their own medical decisions, but they may not recall the process or their decision; they would need reminders as well as preservation of their process through a written or videotaped record. Patients with more advanced disease may tolerate
November 2014
the medical procedure in question but may encounter complications due to an inability to sit still, to say they are in pain, or to remember not to touch an indwelling line or catheter. Prognostication in dementia is an inexact science, most studied in patients with AD, and largely based on functional and cognitive decline. AD is generally described based on mild, moderate, and severe disease stages; those patients who fall into the severe category experience profound cognitive impairment, require assistance with all aspects of personal care, and experience neurologic dysfunction such as gait instability, incontinence, and difficulty swallowing. Survival time after diagnosis of AD ranges from 4 to 8 years on average, often depending on the stage of disease at diagnosis.12–16 In the United States, Medicare hospice eligibility for dementia is based on the Functional Assessment Staging Tool. Once patients meet criteria for stage 7c, they are presumed to have a prognosis of r6 months and thus are hospice eligible. However, several studies investigating the accuracy of dementia prognostic tools have found that the Functional Assessment Staging Tool did not reliably predict 6month mortality.17,18 This finding is problematic in that dementia patients who have poor prognostic indicators may nevertheless be ineligible for the Medicare Hospice Benefit. Access to early palliative care can assist patients and families with end-of-life planning before the onset of advanced dementia, especially important given the prognostic difficulties in late-stage dementia.
PALLIATIVE MANAGEMENT OF MEDICAL CONCERNS IN ADVANCED DEMENTIA
Mrs. B., a 96-year-old, formerly fiercely independent woman, had several years of strokes, which caused increasing cognitive impairment and functional decline. Her last hospitalization, after another major stroke, was prolonged when she developed pneumonia and sepsis. Once at home, she began having occasional episodes of bradycardia that resulted in acute confusion and dizziness. She had previously expressed a desire to stay out of hospitals and focus on comfort care, but the episodes concerned her family, and they wondered if she should be hospitalized for evaluation. Hospitalizations are associated with poor outcomes in patients with advanced dementia. Both age and
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Clinical Therapeutics cognitive impairment increase the risk of developing delirium while hospitalized for medical or surgical reasons.19–21 In the geriatric population, delirium is associated with increased cognitive and functional decline, longer hospital stays, higher postdischarge mortality rates, and increased rates of institutionalization.22–30 Further discussion of goals of care with Mrs. B.’s family helped them to decide that although they did want to pursue less burdensome medical interventions such as antibiotics if such a need arose, they did not feel that procedures such as pacemaker surgery were in line with what Mrs. B. would want. They opted to manage Mrs. B.’s symptoms as an outpatient, focusing on alleviating her distress during the episodes of bradycardia with reassurance and reorientation.
PALLIATIVE SYMPTOM MANAGEMENT IN ADVANCED DEMENTIA Mrs. M., an 83-year-old widow with advanced dementia, had been growing more uninterested in eating over several months, resulting in substantial weight loss. Mrs. M. no longer made gestures that her family had previously associated with her expressing hunger, would not touch meals placed in front of her, and became agitated when family tried to feed her during mealtimes. They wondered if her loss of appetite was a symptom of depression. Rates of depression in the geriatric population range from 2% to 10% in community settings to 30% in hospitalized elderly subjects and 40% in those with serious medical comorbidities.31–35 It is one of the most common psychiatric diagnoses in dementia patients, with up to 50% being affected.36 In the early stages of dementia, assessment of depression is no different than in noncognitively impaired elderly subjects. In later stages, however, it becomes much more difficult to make assessments in these patients. Language and speech impairments make it difficult for patients to understand screening questions and to express their mood states. Many classical symptoms of depression, such as difficulty with sleep, change in appetite, lack of energy, decreased motivation, and apathy, are also symptoms of dementia. Screening tools seem to have limited value in advanced dementia.37 In Mrs. M.’s case, her loss of appetite occurred concurrently with other symptoms of physical decline, including incontinence, and increased difficulty
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transferring from wheelchair to bed. When she did eat or drink, her family noted that she sometimes choked and seemed to have trouble swallowing, indicating dementia was a more likely cause of her eating problems than clinical depression. Given the lack of reversible causes for her symptoms, Mrs. M.’s family wondered if a feeding tube might benefit her. Feeding difficulties are common in advanced dementia and may have multiple etiologies, including depression, paranoid delusions about food, forgetting to eat, difficulty understanding the mechanics of eating, and, in later stages, problems swallowing. A palliative approach to eating problems involves careful determination of the causes of the problem, explanation of typical symptom evolution of dementia, and a discussion of goals of care, including outcomes of enteral-feeding tubes in patients with dementia. Given the evidence of substantial risks of enteralfeeding tubes and lack of benefit, Mrs. M.’s family opted for careful hand-feeding. They offered her soft, high-calorie foods that she had enjoyed in the past and were pleased to find she was able to take in small spoonfuls of milkshakes and puddings without distress.
NEUROPSYCHIATRIC SYMPTOMS OF DEMENTIA Neuropsychiatric symptoms, including depression, apathy, irritability, delusions, and hallucinations, occur frequently in patients with dementia. Studies looking at prevalence have identified these symptoms in 60% to 97% of dementia patients.38–44 Current treatments of behavioral symptoms (most commonly, irritability, agitation, delusions, and hallucinations) that cause the patient distress and interfere with caregiving are limited. Pharmacologically, antipsychotic agents are generally the treatment of choice; despite the increased risks of cardiovascular adverse effects in the elderly, there is often no satisfactory alternative.45 Recent data suggest that citalopram, a selective serotonin reuptake inhibitor, has some benefit on agitation, although additional studies are needed.46 Nonpharmacologic treatments, including behavioral interventions, music, art, and pet therapy, show some benefit, but the data are limited.47,48 Within traditional care environments, such treatments often involve practical difficulties (eg, lack of access, time
Volume 36 Number 11
E.K. Zahradnik and H. Grossman factors, prohibitive costs). Palliative care, however, is interdisciplinary in nature and often uses nonpharmacologic means of symptom control, especially for psychological distress such as anxiety, agitation, and depression.49–61 In addition, optimal palliative care involves not only the patient, but also the patient’s entire support system, including family and caregivers. Treating caregiver stress can, in turn, improve a patient’s psychological environment and overall quality of life, as well as improve care and reduce overall health care costs.44,48,62,63 Providing dementia patients with the resources of palliative care could expand potential treatments for distressing neuropsychiatric symptoms.
SUMMARY: THE CASE FOR PALLIATIVE CARE IN DEMENTIA Patients with dementia are less likely to have advance care directives,64 often experience inadequately recognized and undertreated pain and nonpain symptoms,65–70 and are especially prone to developing complications from medical procedures and hospitalizations.21,27–29,71 Palliative care reduces hospital use and overall health care costs for patients with lifelimiting illnesses and improves the quality of life for patients and their families.9 Using palliative care approaches for symptoms of advanced dementia can reduce symptom burden and improve quality of life for patients and their caregivers. The increasing burden of dementia on the health care system, the known benefits of palliative care, and the lack of palliative care within the dementia population suggests an unmet need with a widespread potential benefit.
ACKNOWLEDGMENTS The authors contributed equally.
CONFLICTS OF INTEREST The authors have indicated that they have no conflicts of interest regarding the content of this article.
REFERENCES 1. Hebert LE, et al. Alzheimer disease in the US population: prevalence estimates using the 2000 census. Arch Neurol. 2003;60:1119–1122. 2. Tejada-Vera B. Mortality from Alzheimer’s disease in the United States: data for 2000 and 2010. NCHS Data Brief. 2013;116:1–8.
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3. Prince M, et al. The global prevalence of dementia: a systematic review and metaanalysis. Alzheimers Dement. 2013;9:63–75.e2. 4. Morrison RS, et al. Palliative care consultation teams cut hospital costs for Medicaid beneficiaries. Health Aff (Millwood). 2011;30:454–463. 5. Evangelista LS, et al. Examining the effects of an outpatient palliative care consultation on symptom burden, depression, and quality of life in patients with symptomatic heart failure. J Card Fail. 2012;18:894–899. 6. Kelley AS, et al. Hospice enrollment saves money for Medicare and improves care quality across a number of different lengths-of-stay. Health Aff (Millwood). 2013;32: 552–561. 7. Miller SC, et al. Government expenditures at the end of life for short- and long-stay nursing home residents: differences by hospice enrollment status. J Am Geriatr Soc. 2004;52:1284–1292. 8. Penrod JD, et al. Hospital-based palliative care consultation: effects on hospital cost. J Palliat Med. 2010;13:973– 979. 9. El-Jawahri A, Greer JA, Temel JS. Does palliative care improve outcomes for patients with incurable illness? A review of the evidence. J Support Oncol. 2011;9:87–94. 10. Irwin KE, et al. Early palliative care and metastatic nonsmall cell lung cancer: potential mechanisms of prolonged survival. Chron Respir Dis. 2013;10:35–47. 11. Temel JS, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363:733–742. 12. Walsh JS, Welch HG, Larson EB. Survival of outpatients with Alzheimer-type dementia. Ann Intern Med. 1990;113: 429–434. 13. Williams MM, et al. Survival and mortality differences between dementia with Lewy bodies vs Alzheimer disease. Neurology. 2006;67:1935–1941. 14. Larson EB, et al. Survival after initial diagnosis of Alzheimer disease. Ann Intern Med. 2004;140:501–509. 15. Brookmeyer R, et al. Survival following a diagnosis of Alzheimer disease. Arch Neurol. 2002;59:1764–1767. 16. Rait G, et al. Survival of people with clinical diagnosis of dementia in primary care: cohort study. BMJ. 2010;341: c3584. 17. Brown MA, et al. Prognostic indicators of 6-month mortality in elderly people with advanced dementia: a systematic review. Palliat Med. 2013;27:389–400. 18. Mitchell SL, et al. The advanced dementia prognostic tool: a risk score to estimate survival in nursing home residents with advanced dementia. J Pain Symptom Manage. 2010;40:639–651. 19. Schor JD, et al. Risk factors for delirium in hospitalized elderly. JAMA. 1992;267:827–831.
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Clinical Therapeutics 20. Pisani MA, et al. Characteristics associated with delirium in older patients in a medical intensive care unit. Arch Intern Med. 2007;167: 1629–1634. 21. Dasgupta M, Dumbrell AC. Preoperative risk assessment for delirium after noncardiac surgery: a systematic review. J Am Geriatr Soc. 2006;54:1578–1589. 22. Cole MG, Primeau FJ. Prognosis of delirium in elderly hospital patients. CMAJ. 1993;149:41–46. 23. Inouye SK, et al. Does delirium contribute to poor hospital outcomes? A three-site epidemiologic study. J Gen Intern Med. 1998;13: 234–242. 24. Leslie DL, et al. Premature death associated with delirium at 1-year follow-up. Arch Intern Med. 2005; 165:1657–1662. 25. McAvay GJ, et al. Older adults discharged from the hospital with delirium: 1-year outcomes. J Am Geriatr Soc. 2006;54:1245–1250. 26. McCusker J, et al. Delirium predicts 12-month mortality. Arch Intern Med. 2002;162:457–463. 27. Witlox J, et al. Delirium in elderly patients and the risk of postdischarge mortality, institutionalization, and dementia: a metaanalysis. JAMA. 2010;304:443–451. 28. Davis DH, et al. Delirium is a strong risk factor for dementia in the oldest-old: a population-based cohort study. Brain. 2012;135:2809–2816. 29. Fick DM, et al. Delirium superimposed on dementia is associated with prolonged length of stay and poor outcomes in hospitalized older adults. J Hosp Med. 2013;8:500–505. 30. Lyketsos CG, Sheppard JM, Rabins PV. Dementia in elderly persons in a general hospital. Am J Psychiatry. 2000;157:704–707. 31. Alexopoulos GS, et al. Assessment of late life depression. Biol Psychiatry. 2002;52:164–174. 32. Borin L, et al. Predictors of depression in geriatric medically ill inpatients. Int J Psychiatry Med. 2001;31:1–8.
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33. Burke WJ, Wengel SP. Late-life mood disorders. Clin Geriatr Med. 2003;19:777–797, vii. 34. Koenig HG, et al. Depression in medically ill hospitalized older adults: prevalence, characteristics, and course of symptoms according to six diagnostic schemes. Am J Psychiatry. 1997;154:1376–1383. 35. Krishnan KR, et al. Comorbidity of depression with other medical diseases in the elderly. Biol Psychiatry. 2002;52:559–588. 36. Lyketsos CG, Olin J. Depression in Alzheimer’s disease: overview and treatment. Biol Psychiatry. 2002;52:243–252. 37. Greenberg L, et al. Screening for depression in nursing home palliative care patients. J Geriatric Psychiatry Neurol. 2004;17:212–218. 38. Lyketsos CG, et al. Prevalence of neuropsychiatric symptoms in dementia and mild cognitive impairment: results from the cardiovascular health study. JAMA. 2002;288:1475–1483. 39. Lyketsos CG, et al. Mental and behavioral disturbances in dementia: findings from the Cache County Study on Memory in Aging. Am J Psychiatry. 2000;157:708–714. 40. Mega MS, et al. The spectrum of behavioral changes in Alzheimer’s disease. Neurology. 1996;46:130–135. 41. Peters KR, et al. Characterizing neuropsychiatric symptoms in subjects referred to dementia clinics. Neurology. 2006;66:523–528. 42. Savva GM, et al. Prevalence, correlates and course of behavioural and psychological symptoms of dementia in the population. Br J Psychiatry. 2009;194:212–219. 43. Steinberg M, et al. Point and 5-year period prevalence of neuropsychiatric symptoms in dementia: the Cache County Study. Int J Geriatr Psychiatry. 2008;23:170–177. 44. Callahan CM, et al. Effectiveness of collaborative care for older adults with Alzheimer disease in primary care: a randomized controlled trial. JAMA. 2006;295:2148–2157.
45. Carson S, McDonagh MS, Peterson K. A systematic review of the efficacy and safety of atypical antipsychotics in patients with psychological and behavioral symptoms of dementia. J Am Geriatr Soc. 2006;54:354–361. 46. Porsteinsson AP, et al. Effect of citalopram on agitation in Alzheimer disease: the CitAD randomized clinical trial. JAMA. 2014;311:682–691. 47. Gitlin LN, Kales HC, Lyketsos CG. Nonpharmacologic management of behavioral symptoms in dementia. JAMA. 2012;308:2020–2029. 48. Gitlin LN. Good news for dementia care: caregiver interventions reduce behavioral symptoms in people with dementia and family distress. Am J Psychiatry. 2012;169:894–897. 49. Clements-Cortes A. The use of music in facilitating emotional expression in the terminally ill. Am J Hosp & Palliat Med. 2004;21:255–260. 50. Anderson T, Watson M, Davidson R. The use of cognitive behavioural therapy techniques for anxiety and depression in hospice patients: a feasibility study. Palliat Med. 2008; 22:814–821. 51. Ando M, et al. One-week Short-Term Life Review interview can improve spiritual well-being of terminally ill cancer patients. Psychooncology. 2008; 17:885–890. 52. Cheng JO, et al. A pilot study on the effectiveness of anticipatory grief therapy for elderly facing the end of life. J Palliat Care. 2010;26:261– 269. 53. Chochinov HM, et al. Dignity therapy: A novel psychotherapeutic intervention for patients near the end of life. J Clin Oncol. 2005;23:5520– 5525. 54. Chochinov HM, et al. Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial. Lancet Oncol. 2011;12:753–762. 55. Cohen S, Steiner W, Mount BM. Phototherapy in the treatment of depression in the terminally ill. J Pain Symptom Manage. 1994;9:534–536.
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E.K. Zahradnik and H. Grossman 56. Gafner G, Benson S. Efficacy of clinical hypnosis in the enhancement of quality of life of terminally ill cancer patients. Contemporary Hypnosis. 2001;18:145–160. 57. Galfin JM, Watkins ER, Harlow T. A brief guided self-help intervention for psychological distress in palliative care patients: a randomised controlled trial. Palliat Med. 2012;26: 197–205. 58. Louis M, Kowalski SD. Use of aromatherapy with hospice patients to decrease pain, anxiety, and depression and to promote an increased sense of well-being. Am J Hosp & Palliat Med. 2002;19:381–386. 59. Miller DK, et al. Supportive-affective group experience for persons with life-threatening illness: reducing spiritual, psychological, and deathrelated distress in dying patients. J Palliat Med. 2005;8:333–343. 60. Serfaty M, et al. The ToT study: helping with Touch or Talk (ToT): a pilot randomised controlled trial to examine the clinical effectiveness of aromatherapy massage versus cognitive behaviour therapy for emotional distress in patients in cancer/palliative care. Psychooncology. 2012;21:563–569. 61. Soden K, et al. A randomized controlled trial of aromatherapy massage in a hospice setting. Palliat Med. 2004;18:87–92. 62. van der Steen JT, et al. Caregivers’ understanding of dementia predicts patients’ comfort at death: a prospective observational study. BMC Med. 2013;11:105. 63. Callahan CM, et al. Redesigning systems of care for older adults with Alzheimer’s disease. Health Aff (Millwood). 2014;33:626–632. 64. Mitchell SL, Kiely DK, Hamel MB. Dying with advanced dementia in the nursing home. Arch Intern Med. 2004;164:321–326. 65. Barry HE, et al. Pain in care home residents with dementia: an exploration of frequency, prescribing and relatives’ perspectives. Int J Geriatr
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66.
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70.
71.
Psychiatry. Apr 15, 2014. [Epub ahead of print]. de Souto Barreto P, et al. Potential underuse of analgesics for recognized pain in nursing home residents with dementia: a cross-sectional study. Pain. 2013;154:2427–2431. Morrison RS, et al. Pain and discomfort associated with common hospital procedures and experiences. J Pain Symptom Manage. 1998;15:91–101. Scherder E, et al. Recent developments in pain in dementia. BMJ. 2005;330:461–464. Yeaman PA, Ford JL, Kim KY. Providing quality palliative care in endstage Alzheimer disease. Am J Hosp Palliat Care. 2013;30:499–502. Mitchell SL, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361:1529–1538. Robinson TN, et al. Postoperative delirium in the elderly: risk factors and outcomes. Ann Surg. 2009;249: 173–178.
Address correspondence to: Erin K. Zahradnik, Icahn School of Medicine at Mount Sinai, Department of Psychiatry, One Gustave L. Levy Place, Box 1230, New York, NY 10029. E-mail: [email protected]
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Review Article
Palliative Care as a Primary Therapeutic Approach in Advanced Dementia: A Narrative Review Erin K. Zahradnik, MD1; and Hillel Grossman, MD1,2 1 2
Icahn School of Medicine at Mount Sinai, Department of Psychiatry, New York, New York; and James J. Peters Veterans Affairs Medical Center
ABSTRACT Purpose: The goal of this narrative review was to identify and summarize the ways in which palliative care could benefit patients who have advanced dementia. Methods: This case-based discussion article examines current literature on palliative care for dementia. Findings: Dementia is an incurable, progressive disease that affects millions of subjects. The prevalence has grown in the last decade and is projected to continue on this trajectory. In the later stages of dementia, subjects require increasing levels of care due to severe cognitive and functional impairment. Although the field of palliative medicine focuses on improving the quality of life of patients with lifelimiting illnesses, many patients with advanced dementia do not receive palliative care services. Implications: Palliative care has been shown to improve patient and caregiver satisfaction, quality of life, and symptom burden at the end of life. Patients with advanced dementia would benefit from increased access to palliative care. (Clin Ther. 2014;36:1512– 1517) & 2014 Elsevier HS Journals, Inc. All rights reserved. Key Words: palliative care, dementia, Alzheimer’s disease, geriatrics, geriatric psychiatry.
INTRODUCTION Dementia, regardless of subtype, is an incurable neurodegenerative disease, characterized by progressive impairment in cognition and functional status. Accepted for publication October 7, 2014. http://dx.doi.org/10.1016/j.clinthera.2014.10.006 0149-2918/$ - see front matter & 2014 Elsevier HS Journals, Inc. All rights reserved.
1512
Although patients may live for decades after the initial onset of symptoms, it is ultimately a terminal diagnosis. In 2012, 5.2 million people in the United States had a diagnosis of Alzheimer’s disease (AD); by 2025, that number is expected to reach 6.7 million.1 In 2010, AD was the fifth leading cause of death in Americans aged 465 years, reflecting an increase of 38.7% from 2000 to 2010.2 Worldwide, an estimated 44.4 million subjects have dementia, and by 2030, there will be a projected 75.6 million people with the disease.3 Despite the prevalence, patients with dementia are, as a whole, underrepresented within the palliative care population. Palliative care focuses on improving patients’ quality of life by alleviating the symptom burden of lifelimiting illnesses. The palliative care population includes patients who are terminally ill and have r6 months to live (hospice-eligible patients), those who are terminally ill but have a life expectancy 46 months, and those who have a life-limiting illness but are not imminently dying. Palliative care may be delivered alongside potentially curative treatments, at any stage in the disease process. Patients can receive services in outpatient clinics, nursing facilities, and hospitals, as well as at home. Palliative care has been shown to increase quality of life in patients, families, and caregivers; decrease medical costs; and reduce hospital usage.4–8 In the case of cancer, early access may extend survival.9–11 A palliative care approach to dementia moves the focus of medical care from estimated prognosis to quality of life. Currently, the goal of dementia treatment is not Scan the QR Code with your phone to obtain FREE ACCESS to the articles featured in the Clinical Therapeutics topical updates or text GS2C65 to 64842. To scan QR Codes your phone must have a QR Code reader installed.
Volume 36 Number 11
E.K. Zahradnik and H. Grossman to cure but to slow progression and alleviate symptoms that interfere with quality of life. Such symptoms include behavioral problems, functional decline, sleep disorders, and eating difficulties; these symptoms not only cause distress for patients but also negatively affect caregivers and family members. Formally introducing dementia patients to palliative care can help ameliorate such symptoms and enhance additional aspects of management, including delineating goals of care for patients, providing caregiver support, and managing long-term care planning options. A palliative approach can help reduce the medical burden placed on patients from multiple medications, procedures, and hospitalizations. It can also help patients and families explore their own expectations about the disease process and ideas of symptom management. This case-based discussion article examined the current literature on palliative care for dementia.
STAGES OF DEMENTIA AND IMPACT ON TREATMENT DECISIONS In its early to moderate stages, dementia is often seen as a chronic syndrome, rather than as a primary lifelimiting disease. The consequence of this perception is that medical decisions are made in isolation, without consideration of how treatments may impact the specific vulnerabilities of a patient with dementia. In particular, dementia (especially AD) is associated with cognitive impairment, memory loss, and problems with language expression and comprehension, all of which can have significant effects on treatment outcomes. When a patient with a life-limiting cancer diagnosis is being considering for a medical treatment, the presence of the cancer would prompt a number of questions. How will the treatment affect the cancer? How will the presence of cancer impact recovery from or tolerability of the procedure? What is the patient’s overall prognosis, and how does that influence the feasibility of the particular treatment? Similarly, in patients with dementia, there should be a consideration of staging: patients with early-stage AD are typically able to reason through issues of some complexity and make their own medical decisions, but they may not recall the process or their decision; they would need reminders as well as preservation of their process through a written or videotaped record. Patients with more advanced disease may tolerate
November 2014
the medical procedure in question but may encounter complications due to an inability to sit still, to say they are in pain, or to remember not to touch an indwelling line or catheter. Prognostication in dementia is an inexact science, most studied in patients with AD, and largely based on functional and cognitive decline. AD is generally described based on mild, moderate, and severe disease stages; those patients who fall into the severe category experience profound cognitive impairment, require assistance with all aspects of personal care, and experience neurologic dysfunction such as gait instability, incontinence, and difficulty swallowing. Survival time after diagnosis of AD ranges from 4 to 8 years on average, often depending on the stage of disease at diagnosis.12–16 In the United States, Medicare hospice eligibility for dementia is based on the Functional Assessment Staging Tool. Once patients meet criteria for stage 7c, they are presumed to have a prognosis of r6 months and thus are hospice eligible. However, several studies investigating the accuracy of dementia prognostic tools have found that the Functional Assessment Staging Tool did not reliably predict 6month mortality.17,18 This finding is problematic in that dementia patients who have poor prognostic indicators may nevertheless be ineligible for the Medicare Hospice Benefit. Access to early palliative care can assist patients and families with end-of-life planning before the onset of advanced dementia, especially important given the prognostic difficulties in late-stage dementia.
PALLIATIVE MANAGEMENT OF MEDICAL CONCERNS IN ADVANCED DEMENTIA
Mrs. B., a 96-year-old, formerly fiercely independent woman, had several years of strokes, which caused increasing cognitive impairment and functional decline. Her last hospitalization, after another major stroke, was prolonged when she developed pneumonia and sepsis. Once at home, she began having occasional episodes of bradycardia that resulted in acute confusion and dizziness. She had previously expressed a desire to stay out of hospitals and focus on comfort care, but the episodes concerned her family, and they wondered if she should be hospitalized for evaluation. Hospitalizations are associated with poor outcomes in patients with advanced dementia. Both age and
1513
Clinical Therapeutics cognitive impairment increase the risk of developing delirium while hospitalized for medical or surgical reasons.19–21 In the geriatric population, delirium is associated with increased cognitive and functional decline, longer hospital stays, higher postdischarge mortality rates, and increased rates of institutionalization.22–30 Further discussion of goals of care with Mrs. B.’s family helped them to decide that although they did want to pursue less burdensome medical interventions such as antibiotics if such a need arose, they did not feel that procedures such as pacemaker surgery were in line with what Mrs. B. would want. They opted to manage Mrs. B.’s symptoms as an outpatient, focusing on alleviating her distress during the episodes of bradycardia with reassurance and reorientation.
PALLIATIVE SYMPTOM MANAGEMENT IN ADVANCED DEMENTIA Mrs. M., an 83-year-old widow with advanced dementia, had been growing more uninterested in eating over several months, resulting in substantial weight loss. Mrs. M. no longer made gestures that her family had previously associated with her expressing hunger, would not touch meals placed in front of her, and became agitated when family tried to feed her during mealtimes. They wondered if her loss of appetite was a symptom of depression. Rates of depression in the geriatric population range from 2% to 10% in community settings to 30% in hospitalized elderly subjects and 40% in those with serious medical comorbidities.31–35 It is one of the most common psychiatric diagnoses in dementia patients, with up to 50% being affected.36 In the early stages of dementia, assessment of depression is no different than in noncognitively impaired elderly subjects. In later stages, however, it becomes much more difficult to make assessments in these patients. Language and speech impairments make it difficult for patients to understand screening questions and to express their mood states. Many classical symptoms of depression, such as difficulty with sleep, change in appetite, lack of energy, decreased motivation, and apathy, are also symptoms of dementia. Screening tools seem to have limited value in advanced dementia.37 In Mrs. M.’s case, her loss of appetite occurred concurrently with other symptoms of physical decline, including incontinence, and increased difficulty
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transferring from wheelchair to bed. When she did eat or drink, her family noted that she sometimes choked and seemed to have trouble swallowing, indicating dementia was a more likely cause of her eating problems than clinical depression. Given the lack of reversible causes for her symptoms, Mrs. M.’s family wondered if a feeding tube might benefit her. Feeding difficulties are common in advanced dementia and may have multiple etiologies, including depression, paranoid delusions about food, forgetting to eat, difficulty understanding the mechanics of eating, and, in later stages, problems swallowing. A palliative approach to eating problems involves careful determination of the causes of the problem, explanation of typical symptom evolution of dementia, and a discussion of goals of care, including outcomes of enteral-feeding tubes in patients with dementia. Given the evidence of substantial risks of enteralfeeding tubes and lack of benefit, Mrs. M.’s family opted for careful hand-feeding. They offered her soft, high-calorie foods that she had enjoyed in the past and were pleased to find she was able to take in small spoonfuls of milkshakes and puddings without distress.
NEUROPSYCHIATRIC SYMPTOMS OF DEMENTIA Neuropsychiatric symptoms, including depression, apathy, irritability, delusions, and hallucinations, occur frequently in patients with dementia. Studies looking at prevalence have identified these symptoms in 60% to 97% of dementia patients.38–44 Current treatments of behavioral symptoms (most commonly, irritability, agitation, delusions, and hallucinations) that cause the patient distress and interfere with caregiving are limited. Pharmacologically, antipsychotic agents are generally the treatment of choice; despite the increased risks of cardiovascular adverse effects in the elderly, there is often no satisfactory alternative.45 Recent data suggest that citalopram, a selective serotonin reuptake inhibitor, has some benefit on agitation, although additional studies are needed.46 Nonpharmacologic treatments, including behavioral interventions, music, art, and pet therapy, show some benefit, but the data are limited.47,48 Within traditional care environments, such treatments often involve practical difficulties (eg, lack of access, time
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E.K. Zahradnik and H. Grossman factors, prohibitive costs). Palliative care, however, is interdisciplinary in nature and often uses nonpharmacologic means of symptom control, especially for psychological distress such as anxiety, agitation, and depression.49–61 In addition, optimal palliative care involves not only the patient, but also the patient’s entire support system, including family and caregivers. Treating caregiver stress can, in turn, improve a patient’s psychological environment and overall quality of life, as well as improve care and reduce overall health care costs.44,48,62,63 Providing dementia patients with the resources of palliative care could expand potential treatments for distressing neuropsychiatric symptoms.
SUMMARY: THE CASE FOR PALLIATIVE CARE IN DEMENTIA Patients with dementia are less likely to have advance care directives,64 often experience inadequately recognized and undertreated pain and nonpain symptoms,65–70 and are especially prone to developing complications from medical procedures and hospitalizations.21,27–29,71 Palliative care reduces hospital use and overall health care costs for patients with lifelimiting illnesses and improves the quality of life for patients and their families.9 Using palliative care approaches for symptoms of advanced dementia can reduce symptom burden and improve quality of life for patients and their caregivers. The increasing burden of dementia on the health care system, the known benefits of palliative care, and the lack of palliative care within the dementia population suggests an unmet need with a widespread potential benefit.
ACKNOWLEDGMENTS The authors contributed equally.
CONFLICTS OF INTEREST The authors have indicated that they have no conflicts of interest regarding the content of this article.
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Address correspondence to: Erin K. Zahradnik, Icahn School of Medicine at Mount Sinai, Department of Psychiatry, One Gustave L. Levy Place, Box 1230, New York, NY 10029. E-mail: [email protected]
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