Vol. 11 Issue 9
Terminal Dementia In the Elderly
Awareness Leads to More Appropriate Care
Dementia is no longer considered a normal consequence of aging. Rather, it is a disease with specific and identifiable causes. Dementia has historically been viewed as a mental disorder and not a physical one. We now know that this generalization is untrue dementia is caused by progressive physical disorders and can cause physiologic death.1,2
The many causes of dementia in elders include Alzheimer's disease, vascular disease, Lewy body disease, Pick's disease and Parkinson's disease.1,3 Alzheimer's disease is the major cause of dementia in people older than 65.4 These disorders share common symptoms and usually progress in a stepwise fashion, leading to terminal dementia and death.5 The concept of terminal dementia must be recognized and defined so that all providers can clearly understand its meaning, value and applicability to practice.
Dementia has historically been associated with senility and first appeared in the literature in the 19th century.6 In the past, most people kept patients with dementia at home, hiding them from society and thus ignoring the problem. Today, dementia affects 20% of people older than 85 and is a significant concern for their caregivers, families and health care providers.7,8
An estimated 4 million U.S. residents have been diagnosed with Alzheimer's disease, the leading cause of dementia, and this population is projected to grow to 14 million by 2050.9,10 In 1999, Alzheimer's disease was the eighth leading cause of all deaths in the United States.11
The mental impairment associated with Alzheimer's-related dementia manifests as deficits in memory, particularly short-term memory, and impairment in abstract thinking, ability to learn new information, problem solving and judgment.12 Patients experience a loss of orientation, impaired judgment and perception, and a progressive decline in intellectual functioning.13 In the advanced stages, the patient with dementia loses all sense of time and place, fails to recognize friends and relatives, does not feel the need to eat or drink, forgets how to care for himself or herself in activities of daily living (ADLs), becomes incontinent, and experiences other physiologic problems.12
Diagnostic criteria for dementia according to the DSM-IV-TR list multiple cognitive deficits manifested by both memory impairment (amnesia) and one or more of the following cognitive impairments: aphasia (language disturbance), apraxia (impaired ability to carry out motor activities despite intact motor function), agnosia (failure to recognize or identify objects despite intact sensory function), or disturbance in executive ADL performance (such as grooming, eating or ambulating).14
Many authors have given classifications to dementia.1,3,10,15-17 Each author defines the final stage (terminal dementia) differently. All agree that progressive dementia does cause physiologic death, but few label this stage terminal. Causes of death can be attributed to malnutrition, pneumonia caused by aspiration or ineffective breathing, urosepsis, and pressure ulcers that have become infected, leading to sepsis.
Stages of Dementia
Dementia progresses in a stepwise fashion with early, moderate, advanced and terminal stages.1,3,4,9,10,15,16 Each patient progresses through these stages at different rates and exhibits different behaviors, but there are some commonalities.12 The early stage is characterized by problems with short-term memory, impaired judgment and problem solving (cooking six chicken breasts for his or her own breakfast), confusion about place (getting lost driving to the store), confusion about time of day (getting days and nights mixed up), and mild personality changes (increasing withdrawal or irritability).1,3,4
In the early stages, symptoms of dementia are often masked because they have a slow, insidious onset. Personality changes at this stage can be mild or marked. As the dementia advances, the patient can act very different from his or her inherent personality, exhibiting behaviors such as paranoia, hostility, agitation and withdrawal.6
In the moderate stage of dementia, the patient has a more marked memory impairment, with disorientation about day, month and year; inability to read or write; inability to perform ADLs; loss of impulse control; agnosia (unable to recognize an object); apraxia (forgets how to use an object); and perceptual disturbances.1,3,4,10 Late into the moderate stage of dementia, the patient develops urinary incontinence and possibly becomes delusional or experiences auditory or visual hallucinations.10
The advanced stage of dementia is characterized by severe cognitive impairment. The patient is unable to recognize family or friends, unable to communicate (may begin with aphasia or echolalia and progress to grunts, moans or mumbling), unable to perform any ADLs, and develops urinary or fecal incontinence and impaired mobility (body draws arms and legs toward itself, and muscles become rigid and contracted into a fetal position).1,3,4,10
The final stage is terminal dementia. The patient is unable to eat or drink (may be unaware of hunger or thirst, may forget how to chew and swallow), experiences respiratory depression (does not take deep breaths, causing ineffective clearing of secretions and leading to pneumonia), has ineffective coughing (cannot coordinate cough reflex, allowing possible aspiration of oral secretions or liquids in the mouth), and the autoimmune system no longer functions appropriately, leading to conditions such as pneumonia, urinary tract infection or cellulitis.1,3,4,10 The figure accompanying this article presents a conceptualization of this model.
Joshua, 68, recently moved into his son's home. He has a history of cardiovascular disease and multiple minor strokes, with no marked neurological impairment. Joshua had been living by himself but fell and broke his hip and had to be admitted to the hospital for surgical repair. After his recovery, Joshua was discharged home to stay with his son. After a few weeks, Joshua became increasingly paranoid and seemed unable to recognize his son. He began getting up at night and wandering to the neighbor's house, unable to remember how to get back home. He was taken to the hospital for evaluation and diagnosed with multi-infarct dementia.
Joshua continued to decline in the ensuing months. He began mumbling incoherently (striking out at times), losing weight, sleeping all day and wandering at night. Finally Joshua's son could no longer care for him because of his inappropriate behaviors and an increasing need for help with ADLs. Joshua was admitted to a skilled nursing home to receive the care he needed.
Joshua eventually became bedridden, unable to feed himself and unable to turn himself in bed. He lost a significant amount of weight due to his inability to eat and developed repeated urinary tract infections due to his inability to drink adequate amounts of water. Joshua had advanced to the terminal stage of dementia.
Diagnosing Terminal Dementia
It is often difficult to determine when a patient with dementia has progressed to the terminal stage because descriptors have not be clearly communicated in the literature. Providers are reluctant to attach the word "terminal" to the final stage of dementia, since it has been considered a mental condition. When providers do not view dementia as a terminal disease, however, care is aimed at extending the quantity of life, not necessarily the quality.
Ira Byock, MD, points out that some health care providers may be in denial about mortality.18 This reluctance is universal. Families may also be hesitant to accept a terminal diagnosis, even in cases of advanced illnesses. The reluctance of providers to tell families that a patient's dementia is terminal stems from the way the provider was trained.19 From the outset of the educational process, providers learn to fight disease with every weapon possible. In this mindset, the provider sees a patient's death as failure, with emphasis placed on curing rather than caring.18
Treatment would be more appropriate and caring if terminal dementia were diagnosed early and explained, allowing the family to understand the consequences of this disease process. It would help them cope with the inevitable death and seek the support they need from family, friends and support services. Hospice is one such service, providing support and care to patients with terminal illnesses who have approximately 6 months or less to live.20 But referrals to hospice are often delayed because health care providers are reluctant to diagnose dementia as a terminal disease process.19
Current criteria for accepting an elder with dementia into hospice are a Functional Assessment Staging (FAST) score of less than 7 and recent diagnosis of one of the following: aspiration pneumonia, pyelonephritis or other upper UTI, septicemia, multiple stage 3 or 4 pressure ulcers, weight loss of 10% over the last 6 months, recurrent fever after antibiotics, inability to take sufficient food or fluids, or serum albumin < 2.5 gm/dL.21 Another scale that hospice programs use for staging terminal diseases is the Karnofsky Performance Scale.22 A score of 50 or less is one of the qualifying criteria for hospice admission.21 These scales determine the abilities of the patient to function in activities of daily living.22 But these tools do not include many of the physiologic symptoms of terminal dementia. Providers need to have an accurate understanding of what terminal dementia is and what qualifies as descriptors of terminal dementia.
A complete work-up should be done on any elder who presents with symptoms of dementia to help differentiate between treatable causes and untreatable ones. Perform a physical examination and order laboratory tests including CBC with sedimentation rate, serum electrolytes, calcium, glucose, blood urea nitrogen, creatinine, albumin-prealbumin, liver function tests, thyroid-stimulating hormone, folate level, vitamin B12, syphilis serology, and urinalysis.23 Other tests to consider are HIV, cortisol levels, hemoglobin A1C and drug levels (anticonvulsants, digoxin, theophylline, etc). Also consider ordering computed tomography of the head, magnetic resonance imaging, positron emission tomography or electroencephalography. Referral to a neurologist may be necessary. Once the diagnosis of dementia is made, develop a plan of care with input from the patient and family.
Dementing disorders generally develop slowly, leaving the patient with the ability to enjoy life and other people.24 People with dementia often forget that they forget, so their anxiety about forgetfulness disappears. The challenge is to seek meaning in the midst of mental decline. Priorities must be adjusted to allow autonomy and strive for what is in the best interest of the patient. Developing a culture of dementia care is unavoidable.24
Depression is one concern for elders with dementia, especially in the earlier stages, when they may be aware they are not cognitively intact. The symptoms of depression are often underrecognized and underdiagnosed, since they can often be confused with anxiety or various somatic or dementia-like symptoms.25 Key areas to address when caring for the elder with dementia and depression include: promotion of nutrition, elimination, sleep or rest patterns, physical comfort and pain control.25 Interventions should focus on enhancing physical functioning through structured and regular activity.25 Medications may be appropriate when environmental and behavioral interventions fail. Depression should be treated using an appropriate agent at an adequate dose and for an adequate amount of time. Selection of any medication for an elderly patient must take into account side effects because elders are generally more sensitive to side effects such as falling, orthostatic hypotension, anticholinergic effects, etc. In this particular age group, the selective serotonin reuptake inhibitors (SSRIs) are quite appropriate. SSRIs do not cause orthostatic hypotension or anticholinergic side effects.26 Table 1 provides a list of common SSRIs.
Elders are at increased risk of falling due to changes in visual acuity, increased reaction time, decreased balance and muscle strength, and possible orthostatic hypotension.25 Elderly patients with dementia should live in an environment that decreases the risk of falls, that is spacious, clutter-free, well-lit, has hand rails and is equipped with sturdy furniture. Wheelchair and bed wheels should have locks that prevent movement when the elder uses them for steadiness. The elder should wear shoes that fit properly, will not slide off easily and provide good traction. At times, institutional or inpatient staff may utilize restraints to prevent elderly patients from causing injury to themselves, but this can lead to deconditioning and development of contractures, which will hasten the onset of immobility.13 Restraints should only be used when all other measures fail and only when absolutely necessary.
Pain management is a major concern for elderly patients with dementia. Elderly people in general often experience chronic pain, and many expect pain to be a normal part of aging.25 Appropriate interventions can alleviate or make pain bearable so that a patient has a better quality of life. Analgesics are the most frequent first-line intervention, followed by non-narcotic analgesics and nonsteroidal medications. Narcotics may be a consideration but should be used as a last resort due to their side effects.26 Dosing and route of administration are two key issues to consider when choosing a pain medication. Taking pain medication may be frightening to the patient, who may be concerned about addiction or behavioral change under the influence of medication.25 Anticipate these feelings and provide patients with as much information as they can understand. To assist in their regaining a sense of control, elders with cognitive impairment should be given the same opportunities to choose pain management as anyone else.25
Many behavioral problems are associated with the early and middle stages of dementia. The patient may wander, be suspicious or paranoid, experience delusions or hallucinations, or exhibit a phenomenon known as sundowning, in which he or she shows increased agitation or other behavioral problems in the late afternoon or evening.23 A structured environment and routine will help manage these behaviors. The patient's environment should contain reminders of his or her life, such as photos or memorabilia, but avoid clutter, which can cause too much visual stimulation.
When environmental or behavioral management do not control problematic behaviors, psychotropic medications may be necessary when there are safety concerns for the elder or caregivers. Common classifications of medications used to control these behaviors are presented in Table 2.
Maintaining communication with elderly dementia patients is essential. They should not be treated and spoken to as children or as objects. Communication should be face to face and at the patient's eye level, not looking down on him or her.24 Orient the elderly patient, but do not allow him or her to become argumentative if he or she disagrees with you. Begin conversations with a normal exchange of ideas, keeping sentences short, simple and direct, using facial expressions, hand signals and even pictures to relay ideas.24 Structure your questions to give the elder two or three options for response.
Allow patients to reminisce, to enjoy their lives again and again through stories as long as they are able. When conversation strays, allow the elder to live in that moment if it gives him or her pleasure, but redirect the conversation if he or she appears lost or confused. As the dementia progresses, the patient will no longer be able to converse and enjoy these moments, so let him or her enjoy what is possible for as long as possible.
When a patient is unable to participate in conversation, continue to talk to him or her and instruct the nursing staff to do the same. Avoid asking questions because this may cause the patient to become frustrated by his or her inability to answer. A better approach would be to make light conversation.
As dementia advances in its later stages, the patient will no longer be able to maintain nutrition and hydration because of inability to adequately take in food and fluids. Providers commonly rely on feeding tubes as an artificial means of supplying these nutrients.27 Many ethical issues surround the use of feeding tubes in elderly patients with advanced or terminal dementia because there is a generally held belief that artificial nutrition and hydration are associated with caring, and that foregoing these measures is equivalent to neglect and abandonment.27
Various studies have shown that feeding tubes are not effective in preventing malnutrition, preventing or increasing healing of pressure ulcers, preventing aspiration, improving functional status, or extending the quantity of life for patients with advanced or terminal dementia.13,27,28 In fact, feeding tubes may diminish a patient's quality of life because they are associated with a high rate of complications (infections, bleeding and tubes being pulled out by the patient), increased use of restraints and decreased caregiver contact.28,29
Elderly patients with terminal dementia may be more comfortable when palliative measures are given a higher priority over life-prolonging measures.30 This respects the natural dying process and supports the general hospice philosophy, which states that death should be addressed compassionately and with dignity. Involving hospice at an earlier stage and helping families cope with the inevitable may be a more appropriate strategy.
The deleterious effects of dementia on survival have been underestimated.31 Aggressive treatment of terminal dementia does little to extend quantity of life and may decrease quality of the life.32 The care of elders with terminal dementia should be aimed at optimizing their quality of life.33
Terminal dementia is a very real and devastating condition. Health care providers need a clear understanding of the descriptors of terminal dementia to more efficiently and effectively make the diagnosis and communicate it to all the professionals involved.
Understanding that progressive dementia is a terminal illness will help elders and their families make difficult decisions about care. When possible, the elder should be informed early in the disease process about his or her illness and its expected progression. As the dementia process advances, the patient's rights to choose are often taken away due to cognitive decline. Allowing elders to make decisions while they are able will give them some control in their lives and encourage autonomy and self-determination. These wishes should be communicated to relatives and other health care providers and made formal in advanced directives or legal power of attorney. Key decisions to be made include deciding whether to place a feeding tube and determining how aggressively to treat problems, such as with hospitalization, do-not-resuscitate orders or various other life-support measures.
Nurse practitioners and other providers who have concise descriptors of terminal dementia may be inclined to offer more realistic expectations to families, utilize comfort measures more readily and refer to support services such as hospice much earlier in the course of illness.
1. Andresen G. Understanding & managing mental health problems in the elderly. PESI Healthcare CE seminar, 2000.
2. Lehninger F. Managing strategies for problem behaviors in the patient with dementia. Geriatrics. 1998;53(4):55,56,66,68.
3. Glickstein J. Therapeutic Intervention in Alzheimer's Disease. 2nd ed. Gaithersburg, Md.: Aspen Publications; 1997.
4. Eliopoulos C. Gerontological Nursing. 8th ed. Philadelphia: Lippincott; 1997.
5. Schindler R. Late-life dementia: review of the APA guidelines for patient management. Geriatrics. 2000;2000;55(10):55-60,62.
6. Glickstien JA. Program of Functional Communication Skills for Activities of Daily Living: Therapeutic Interventions in Alzheimer's Disease. Gaithersburg, Md.: Aspen Publications; 1988.
7. Strock M. Alzheimer's Disease. National Institute of Mental Health. NIH Publication No. 94-3676. 1994. Available online at: http://www.hoptechno.com/alzheim.htm.
8. Esiri M. The Neuropathology of Dementia. New York: Cambridge University Press; 1997.
9. Frequently asked questions about Alzheimer's disease. Alzheimer's Association Web Site. Available online at: http://www.alz.org/hc/faq.htm.
10. Stanley M, Beare P. Gerontological Nursing: A Health Promotion/Protection Approach. 2nd ed. Philadelphia: F.A. Davis.; 1999: 350-360.
11. Minino A, Smith B. National Vital Statistics Reports. Preliminary Data for 2000. 2000;49(12):3.
12. Cotter V, Strumpf N. Advanced Practice Nursing with Older Adults. Chicago: McGraw-Hill Publishing; 2002.
13. Volicer L, Bloom-Charette L. Enhancing the Quality of Life in Advanced Dementia. Philadelphia, Pa.: Taylor & Francis; 1999.
14. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 4th edition. Washington: American Psychiatric Press, Inc.; 2000.
15. Fry P, Wong P. The Human Quest for Meaning: Personality & Clinical Psychology Series. Mahawah, N.J.: Lawrence Erlbaum Association Publishing; 1998: 335-357.
16. Noland S. How We Die. New York: Vintage Books; 1995.
17. Parks R, Zec R, Wilson R. Neuropsychology of Alzheimer's Disease and Other Dementias. New York: Oxford University Press; 1993.
18. Byock I. Dying Well. Riverhead: Putnam; 1997.
19. Asch-Goodwin, J. The virtues of hospice (terminal care). Patient Care. 2000;34(31):72-74,76-78,80.
20. Knox E. Hospice and Alzheimer's disease: one family's story. Available online at: http://www.ec-online.net/Knowledge/Articles/hospiceknox.html.
21. Hospice Noncancer Diagnoses. Medicare Criteria for Determining Prognosis: A Fact Sheet. Adapted from a Medicare Advisory report published in December 1997 and published by SouthernCare.
22. Stall R. Dr. Stall's Web page: Geriatrics for patients, caregivers, and health care professionals. http://www.acsu.buffalo.edu/~drstall/index.html.
23. Brown J, Bedford N, White S. Gerontological Protocols for Nurse Practitioners. Philadelphia: Lippincott Williams & Williams Inc.; 1999.
24. Post S. The Moral Challenge of Alzheimer's Disease. Baltimore: The John Hopkins University Press; 2000.
25. Abraham I, Bottrell M, Fulmer T, Mezey M. Geriatric Nursing Protocols for Best Practice. New York: Springer Publishing Company; 1999.
26. Salzman C. Psychiatric Medications for Older Adults: The Concise Guide. New York: The Guilford Press; 2001.
27. Li I. Feeding tubes in patients with severe dementia. American Family Physician. 2002;65(8):1605-1560,1509-1512.
28. Ackerman R. Withholding and withdrawing life-sustaining treatment. American Family Physician. 2000;62:1555-1560,1562,1564.
29. Huffman G. Tube feeding in patients with advanced dementia. American Family Physician. 2000;61(7). Available online at: http://www.findarticles.com/cf_dls/m3225/7_61/61432980/print.html.
30. Keay T. Hospice care in the nursing home. American Family Physician. 1998;57(4):491-494.
31. Diloreto S. Dementia shortens life expectancy. Patient Care. 2001;4(11):14-16,19,23-25.
32. Boyd L. A need to evaluate acute care in end-stage dementia. RN. 2000;23(4):63,64,66,74-76.
33. Morrison S. View end-stage dementia as a terminal illness, provide comfort care of pneumonia, hip fracture. JAMA. 2000;284(1):47-52.
Lisa Byrd is a family nurse practitioner at Bolton Family Clinic and oversees the treatment of a large population of elderly patients at extended care facilities in the Jackson, Miss., area. She is a member of the speaker bureaus for Eli Lilly and AstraZeneca.