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| The Psychology of Aging Lecture Part III: Dementia
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The quality of life for someone diagnosed with dementia diminishes persistently. The individual endures an insidious loss of cognitive skills, develops comorbidities, such as depression, and eventually becomes completely dependent on the care given by a spouse, adult child, or paid professional. This lecture recounts the experience of individuals with dementia, discusses the different biological causes of dementia, details the cost and services for the demented population, and concludes by identifying treatments and interventions. |
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Senile dementia refers to a set of symptoms associated with insidious neurological disorders such as Alzheimer's disease multi-infarct cerebrovascular disease (a.k.a., vascular dementia). The symptoms of dementia include intellectual deterioration, behavioral and personality disturbances, and functional limitations. The appearance and progression of these symptoms vary as individuals proceed from very mild to moderate to severe stages of the illness. The Diagnostic and Statistical Manual (American Psychiatric Association, 1996) provides a complete listing of symptoms and establishes the criteria for diagnosing dementia of the Alzheimer's type and vascular dementia. The primary characteristic of dementia is deterioration of cognitive abilities. In the typical case of Alzheimer's disease, the most common cause of dementia the victim experiences continuos cognitive decline with many plateaus. In the plateaus cognitive function mayremain constant for weeks or even months. The disease attacks neurons and individuals with dementia of the Alzheimer's type move from mild to moderate and severe stages of impairment. In comparison, someone with Vascular dementia (i.e., multiple infarct dementia) experiences a more dramatic stepwise cognitive deterioration. The course of this cognitive deterioration is long. The average life expectancy from the onset of dementia falls between 8 and 10 years; although it may range from two to twenty years. The cognitive impairments that accompany the course of dementia are:
Global Deterioration Scale for Age-Associated Cognitive Decline and Alzheimer's Disease
In day to day encounters, an individual with dementia may present language disturbances (aphasia) such as having trouble finding words or putting sentences together correctly. He might also have trouble naming people, places, and things. A demented individual may not know the correct name of his spouse or sibling; a demented individual may not be able to name where he lives or where he was born (agnosia). He may also display problems with motor coordination (apraxia). Apraxia is evidenced by pronounced difficulty with opening small cans and jars, or difficulty with going to the bathroom and voiding. These symptoms occur among healthy older adults as well, the diagnosis of dementia necessitates other pathological symptoms. For example, individuals with dementia experience a decreased ability to think abstractly and have lapses of judgment. Mace and Rabins (1991) provide an excellent qualitative account of how dementia affects the individual's state of mind. Other journalistic accounts of the cognitive deterioration are pervasive. The New York Times (May 16, 1997), in fact, featured the story of an struggling caregiver who abandoned his demented mother in a New Jersey hospital emergency room. Diagnostic criteria for Dementia of the Alzheimer's Type
Diagnostic criteria for 290.4x Vascular Dementia
Individuals with dementia also experience behavioral abnormalities, affective disturbances, and functional disabilities. Reisberg et al. (1986) reported that demented individuals present behavioral problems such as inappropriate aggression, lack of initiative, pacing, and wandering. Individuals with dementia may experience mood disorders and psychotic symptomatology. Depression affected at least 50% of individuals with dementia. As many as 50% of those with severe dementia also suffer from paranoia, hallucinations, and other psychotic symptoms. In fact, the clinical diagnosis of dementia requires that such functional and social impairments coexist with pervasive cognitive dysfunction (American Psychiatric Association, 1994: DSM-IV; McKhann et al., 1984:NINCDS-ADRDA). Dementia of the Alzheimer's type is distinguished from vascular dementia by the rate of symptom progression. Alzheimer's is a gradual progression from mild to moderate to more severe levels while vascular dementia unfolds irregularly. Some strokes may occur in specific and readily observable locations of the brain with specific clinical signs, such as loss of sensation in the left foot, while others occur as multiple infarcts which are not specific to any place or readily detectable with neuroimaging or neurological diagnosis. |
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| Alzheimer's Disease: A Diagnosis of Exclusion
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Prevalence of Dementia Among Older Adults The prevalence of dementia doubles approximately every five years. The prevalence of dementia in older Americans is exceeded only by six of the persisting somatic health conditions: arthritis (48.4%), hypertension (37.2%), hearing impairments (32.0%), orthopedic impairments (17.7%), cataracts (17.3%), and heart disease (13.4%). The prevalence of dementia equaled or surpassed other prominent conditions such as diabetes (9.9%), disorders of the kidney or bladder (6.5%), and emphysema (3.2%). The proportion of chronic debilitating disorders is expanding in relation to decreasing mortality--more older adults will acquire dementia (i.e., increase morbidity) as the incidence of fatal conditions declines. |
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The annual cost of providing formal and informal care (i.e., hourly assistance with activities of daily living and other opportunity costs) amounted to just over $47,000 in nursing homes. For those dwelling in the community, direct costs for formal services averaged $12,572 and costs for informal services were estimated as $34,517. The nursing home residents consumed a per capita average of $42,049 in formal care costs and an estimated $5,542 for informal care. Total direct costs of providing care to demented older adults ($33.17 billion) constitute approximately 3.5% of aggregate U.S. healthcare expenditures and 9.2% of the allocations made for the older population. |
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The majority of individuals with dementia reside at home under the care of a spouse, adult child, or paid professional. The Office of Technology and Assessment (1991) reported that each of the fifty states administered some sort of service linking program which coordinates individuals with dementia and professional services. For example, Connecticut, Delaware, Missouri, Texas, Wisconsin and nine other states operated a telephone information and referral line for individuals with dementia. An innovative service linking program was initiated in Washington by the Spokane Community Mental Health Center. The Gatekeepers program enlists mental health professionals, letter carriers, and meter readers to identify older adults living alone and possibly at-risk for a serious health problem such as dementia (Raschko, 1990). The state of Illinois developed a state wide adaptation of this community outreach program (OTA, 1990). Collis (1990) added that all fifty states have developed some sort of community based service program for individuals with dementia. The state of California has established a state wide network of Alzheimer's Disease Diagnostic and Treatment Centers (ADDTCs). The centers provide a number of "dementia specific" services including diagnostic assessment and treatment. California also administers 26 Caregiver Resource Centers. Despite these programs, only 28.6% of the cognitively impaired received any professional service in a given year. Of those who did receive professional care, 46.3% received a general medical service and 53.7% saw a mental health professional. Further, many primary care physicians are untrained in providing adequate care to someone with dementia. Rubin, Glasser, and Weckle (1987) found that only 42% of their primary care physician sample used a basic mental status screening exam when diagnosing dementia. Fewer than 30% of the physicians conducted a clinical interview, and only 6% employed an appropriate psychometric evaluation. In addition, visiting a primary physician delays the delivery of potentially more effective services to individuals with dementia. Sperlinger and Furst (1994) found that demented individuals experienced a significant delay between visiting a primary care physician and receiving a referral to a mental health service. Large numbers of demented individuals reside in nursing homes, state hospitals, and other residential care facilities. It has been estimated that 51% of the total nursing home population of 1. 5 million older adults and 30.0% of the elderly state and county psychiatric hospital populations were comprised of patients with dementia.
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A number of pharmaceutical agents have been developed to counter the primary and secondary effects of dementia. Behavioral interventions can be applied to reduce incontinence, and improve bathing, walking, eating, and self-care. However, behavioral interventions are less useful with more complex behaviors such as self care (e.g. doing laundry or money management). Other psychological interventions can improve the demented individual's level of depression, intellectual functioning, and reality orientation. Knight, Lutzky, and Macofsky-Urban (1993) established the utility of psychological interventions for caregivers. Some of these include respite care and group therapies that are attended by primary caregivers who share experiences and provide practical insights and emotional support. Since individuals who experience moderate to severe dementia rarely experience symptom reversal, the treatment of dementia should be directed towards maintaining individual quality of life and management of secondary problems such as incontinence and depression. Absolutely no treatment is available to reverse the insidious progression of the disease. There are a few instances which have had varying success in slowing the progression of the disease. These include Cognex, vitamin E, seligine and ginko biloba. Von Dras and Blumenthal (1992) implied that dementia of the Alzhiemer's type is not a natural outcome of the aging process and should not be listed as a cause of death. Individuals with dementia of the Alzheimer's type die from other complications such as pneumonia, a fatal stroke, or heart disease. Under this assumption, the demographic repercussions are notable. As the aging baby boomers experience increasing mortality and decreasing morbidity (i.e., a reduction in fatal conditions), then they are more likely to acquire non-fatal conditions including Alzheimer's disease. Further, since no treatment currently exists that reverses the disease, healthcare professionals should concern themselves with providing the most effective forms of care. Care which maintains an individuals quality of life and benefits his or her caregiver as well. |
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| As we have learned in this chapter, Alzheimer's disease
gradually gets worse and is a terminal condition. Some have referred to
it as a senior citizen's version of AIDS. As the "robber of the mind"
where memory, personality, and the ability to think are impaired and eventually
lost Alzheimer's disease is perhaps the only disease, besides AIDS, that
strikes so much fear in those who are diagnosed with it.
Most people would be shocked and abhorred at the idea of a physician withholding information about their health. However, Alzheimer's disease may only be diagnosed when all other diagnoses have been ruled out. It is a diagnosis of exclusion. There is no specific test to confirm the disease and it can only be confirmed upon autopsy. Why should a physician tell a patient that is could be Alzheimer's disease, when it may not be certain? On the other hand, telling those in early-stage Alzheimer's disease of the suspected diagnosis may give them an opportunity to finalize decisions while they still have limited ability to use their minds. They may be able to make decisions about finances, wills, and health care decisions before they become too impaired. With the opportunity to understand the situation, it may provide enough time for the family to cope with what is to come. After all, Alzheimer's disease affects the caregivers more as the disease progresses. It is a family disease. Conversely, the diagnosis could be so traumatic that the patient decides to commit suicide. This happened in the case of Janet Adkins. Upon hearing of her diagnosis, she made the decision to end her life while still in control. With the support of her husband and sons, she became the first patient Jack Kevorkian helped commit physician-assisted suicide. At age 54, with only mild memory impairment, Janet Adkins voluntarily had herself "put to sleep." Dr. Kevorkian was acquitted. However, by the time a more concrete diagnosis can be made, the patient is usually too impaired to fully understand, and thus, is spared the emotional devastation and social stigma attached to the diagnosis. For the sake of the patient, maybe the doctor should wait. Why rush someone into such confrontations and depressed mood: what will be gained? Based on the above arguments, what is your opinion? Should doctors tell patients that they are in the early stages of Alzheimer's disease? What if the patient was your mother? Your spouse? You? In five hundred words or less (about a page) rationalize the decision to tell or not to tell.
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This lecture portrayed the experience of dementia as multi-faceted deterioration of intellectual and behavioral functioning. Someone with dementia not only loses the ability to learn and remember, he also loses the ability to analyze, evaluate, plan, and make simple decisions. Further, Alzheimer's disease and other causes of dementia correspond with significant changes to behavior. Someone with dementia is more likely to wander, become aggressive or combative, or withdraw and isolate himself from others. Dementia is frequently accompanied by affective disturbances such as depression and paranoia. Someone who is demented cannot maintain steady employment, engage in common social exchanges, or take care of himself. Dementia limits the ability to cook, balance the checkbook, drive, and even go to the bathroom. This devastating disease is not a normal part of the aging process. Current prevalence estimates suggest that just over 8% of the over 65 population is demented but this is likely to increase over the next thirty years as the number of the oldest old grow and cures for fatal conditions like heart disease are discovered. The costs associated with treating individual with dementia are substantial and also will escalate over the next thirty years. Before a dianosis of Alzheimer's disease is made, it is important to eliminate all treatable medical conditions that can cause dementia. There is a strong genetic component to Alzheimer's disease. At this time, there is no treatment to reverse the progression of the disease nor are there any treatments that can prevent the onset of the disease. However, the symptoms of dementia can be ameliorated with pharmacological, psychological, and environmental treatments. At best, drugs moderate the progression of the disease especially for some individuals who are in the very mild and mild stages of disease progression. The delivery of social services such as day and respite care can ameliorate some of the problems experienced by individuals with dementia and their caregivers. One final point:
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