Submitted to Professor Sonna
Psychology 332
May 15, 2003
Dementia
by Nancy Tisdel
Case Study
E.S. led an active, self-sufficient lifestyle until she underwent cardiopulmonary bypass surgery when she was 84 years old. Medication-free her entire life, she was now on a regime of eight different prescribed drugs. Her memory started to fail, and she became mentally confused and frail almost overnight. She continued to deteriorate into dementia over the following three years, living at first in her own home, and then in an assisted care facility.
With most of her savings spent on her care, she left the facility and went to live with her daughter. In the environment of a loving home, complete with plants, cats, and a dog that adored her, her mental confusion began to lift. Then her daughter began to question if E.S. was over-medicated. Working with her physician, some of the drugs were stopped and other dosages reduced. Drug side-effects such as swallowing problems that had led to a twenty pound weight loss, stomach pain, and incontinence all disappeared within a few days of drug cessation. She is now more happy, healthy, and clear.
Characteristics, Course, and Prognostic Indicators
Dementia is a cognitive disorder caused by temporary or permanent brain damage. Cognitive disorders assessed with the DSM-IV are dementia, delirium, amnestic disorders, and cognitive disorders not otherwise specified. Dementia can result from substance abuse, head trauma, vascular conditions, and diseases such as Alzheimer’s, HIV, Parkinson’s, Huntington’s, Pick’s, and Creutzfeldt-Jakob. Other medical causes of dementia are endocrine conditions, vitamin deficiencies, immune disorders, hepatic conditions, metabolic disorders, and other neurological disorders such as multiple sclerosis. Any one or a combination of these conditions may cause dementia.
Another cause of dementia arises from side-effects from cardiopulmonary bypass surgery. A research article published in Neuropsychology, a publication of the American Psychological Association, investigated this concern. The purpose of the study was to assess the incidence of cognitive impairment in individuals after undergoing cardiopulmonary bypass surgery (CPB). Prior research had not indicated a correlation, but observations of CPB patients indicate that 75% exhibit cognitive deterioration after surgery. This suggested that prior research techniques might have been inadequate to explain the apparent correlation. The authors used a split-plot analysis of a variance model which did indicate postoperative impairment. They noted the importance of applying appropriate statistical models to research. Split-plots provide greater detail in recording data.
The authors used a questionnaire to obtain demographic background and medical history from a sample of 39 CPB patients and 49 controls. They noted age, gender, race,
right- or left-handedness, education, time spent in CPB surgery, and time spent in surgical cross-clamp. Then they administered a test battery measuring simple reaction time, choice reaction time, visual attention, visuomotor tracking, visual spatial working memory, auditory verbal working memory, and auditory verbal paired-associate memory. The tests were administered twice at one-month intervals to all subjects, with testing before and one month after surgery in the CPB sample.
The results indicated no cognitive differences in some tests and statistically significant cognitive differences in others. The authors suggested the study was limited in two ways: 1) the inability to attribute postoperative declines in cognitive performance as being unique to CPB surgery, and 2) causes were not clearly defined for cognitive improvement which did not occur in the second battery of tests in the surgical group as it did in the control group (Appendix, Part A).
According to the DSM-IV, the course of dementia can be progressive, static, or remitting, depending on the extent and type of pathology, treatment, and social support. Dementia is most often seen in adults over 85 years of age, with a 16% to 25% incidence of occurrence. This condition is rare in children, although sometimes seen in association with mental retardation.
A diagnosis of dementia requires memory impairment and at least one of the following conditions: aphasia, apraxia, agnosia, or disturbance in executive functioning. The condition must be severe enough to create occupational or social functioning problems, and there must be an observed decline from a higher state of functioning. Severity can be tested with mental status examinations and neuropsychological tests. Cultural factors must be considered in mental status testing because not all cultures have the same references regarding general knowledge, memory, and orientation.
Memory impairment is the most fundamental characteristic of dementia. Individuals may experience difficulty learning new material and recalling old. Memory testing attempts to assess the person’s ability to register, retain, recall, and recognize information. Common tests are to assign a list of words to learn or to ask for recall on topics of former interest to the person. Also, the degree of impact on the individual’s functioning must be considered. Does he get lost in familiar surroundings? Does she remember that food is cooking on the stove?
Aphasia can be another symptom of dementia and is indicated by deterioration of language functioning. Impairment is often observed by vague, empty speech, indefinite references to people and things, repetition of words or phrases, difficulty in comprehending speech and written material, mute silence, echolalia (echoing what is heard), and palilalia (repetition of sounds or words). Aphasia can be tested by asking the individual to name objects in the room or body parts, to follow commands, and to repeat phrases.
Apraxia is impairment of motor functioning despite intact motor abilities, senses, and comprehension. This leads to difficulty in performing familiar activities such as dressing. Apraxia can be tested by asking the individual to perform formerly known activities.
Agnosia is the failure to recognize objects or people despite intact senses. The person may no longer be able to recognize loved ones and may have difficulty identifying known objects.
Disturbances in executive functioning result in impaired abstract thinking, planning, and regulating of complex activities. The person has difficulty generating new
information and coping with new activities. Situations outside the familiar are avoided and flexibility in altering mental sets is reduced.
Executive functioning disturbances can be tested by asking the person to count to ten, to recite the alphabet, to list animals, and to find associations between related words. The impact of the disorder on daily functioning must also be assessed (DSM-IV-TR, 2000).
Epidemiological Information
Epidemiological studies on dementia are only now being undertaken extensively as the baby boomer generation approaches old age, swelling the ranks of the elderly. It is estimated that four million Americans suffer some form of dementia, with a projection of fourteen million by 2050 (Alzheimer’s Association, Massachusetts Chapter, 2000). Of these four million Americans with dementia, about half have severe cases and half have mild to moderate cases (Neurology Forum, 2003). The National Institute on Aging (NIA), an institute within the National Institutes of Health, is currently funding numerous studies on aging and dementia, with special attention paid to minority groups. Studies are currently underway on American Indian, Latino, Asian, and African-American elders.
World-wide estimates for dementia stand at 18 million people, with a projection of 34 million by 2025. It is anticipated that 71% will be residents of developing countries. To note the prevalence in another way, one in twenty individuals over 65 years of age will suffer from dementia. The incidence rises with age to an estimated one in five people over 80 years of age (Alzheimer’s Society, 2003).
The DSM-IV estimates 1.4% to 1.6% of individuals 65 to 69 years of age, and 16% to 25% of individuals 85 years of age and older experience dementia. The Alzheimer’s Disease Education and Referral Center (ADEAR) estimates higher figures for dementia at 3% of people 65 to 74 years of age, and almost 50% of people 85 years and older (ADEAR, 2003).
Survival rates for those afflicted with dementia, particularly Alzheimer’s Disease, vary from 3.3 years after onset (NIA abstract, 2002) to 8 to10 years, and is the fourth leading cause of death in the elderly (Alzheimer’s Association, Massachusetts Chapter, 2000). The Surgeon General of the United States emphasized in an August 2000 report to the American Psychological Association (APA), “Normal aging is not characterized by mental or cognitive disorders” (APA Executive Summary, 2000, p. 3).
Seventy percent of people with dementia live at home and they impact the lives of their caregivers. The typical caregiver is a female family member in her 70s with two chronic health problems of her own. A third of these caregivers will die before the loved one they are caring for, worn down by health problems aggravated by stress. Half the population of nursing homes has some form of dementia (Alzheimer’s Association, Massachusetts Chapter, 2000).
Understanding Abnormal Behavior cites the prevalence of cognitive impairment by demographic characteristics (Figure 15.2, p. 448). Gender does not appear to be a factor with an equal incidence of dementia among males and females. Prevalence of mild impairment is highest among Hispanic Americans and African Americans at 13% to 14%. Whites have a lower incidence of mild impairment at 4%. Education also appears
to be a factor with more highly educated people experiencing less dementia. Individuals with graduate level education have about a 2% incidence of mild cognitive impairment and no severe impairment indicated. Those with less than 9 years of schooling have about a 24% incidence of mild impairment and a 5% incidence of severe impairment (Sue, Sue & Sue, 2000).
Much study needs to be done in the field of dementia. Questions posed in other research articles ask if the lower incidence in highly educated individuals is a result of healthier lifestyles afforded by higher incomes (Azar, 2002). A study conducted by Dr. Hugh C. Hendrie of Indiana University School of Medicine poses questions of cultural and environmental factors in a comparison of Africans from Nigeria with a 1.35% incidence of dementia and African Americans from Indianapolis, IN with a 3.24% incidence (Journal of the American Medical Association, 2001).
Historical Information
Dementia in the elderly did not begin to be understood until the early twentieth century, primarily though the work of two Germans, neuropathologist Alois Alzeheimer and neuropsychiatrist Emil Kraepelin. Prior to their breakthroughs, aging was considered to be an incurable disease and any type of senile dementia was designated as insanity. In European, American, and Canadian cultures, the elderly who had no family to care for them were committed to insane asylums.
Modern geriatrics views the aging process as a normal stage of life and does not consider aging to be a disease unless there is a cognitive disorder or another disease actually present. History did not treat the elderly, especially the “demented” so rationally. Old age was considered a negative condition where the body wore out, a state of
complete loss. No distinction was made between organic brain disease and the normal slowing down of function that accompanies the aging process. Medical intervention was rarely considered because it was assumed impairment in the elderly was a natural stage in the aging process and nothing could be done to improve the situation.
Those suffering from dementia were often derided. They were called “dements” and “pliant nonentities” (Holstein, 1997). Since there were no nursing homes or other institutions that cared for the elderly, individuals with dementia who had no family to care for them were committed to insane asylums and became wards of the state.
Edgar-Andre Montigny conducted research on the treatment of the elderly suffering from dementia residing from 1866 to 1906 at the Rockwood Asylum in Kingston, Ontario, Canada. He found that the administrators of the institution and the families who committed their elders had two very different viewpoints regarding the institutionalizing of those with dementia.
Administrators reported that families were heartlessly abandoning their elders in asylums as a “convenient place to get rid of inconvenient people” and complained that the elderly were “foisted upon the government” (Montigny, 1995). These administrators painted a picture of cruel families which Montigny’s research did not substantiate. He studied patients’ case files and found that the main reason for committing the elderly with dementia was lack of a family member to care for them. Most did not have children, were widowed, or had an elderly spouse who could no longer physically care for them. The next most common reason families committed their relatives needing constant care was financial in nature. They could not afford to hire help, nor could they quit their jobs. In most cases, the files indicated deep regret on the part of families at having to commit their elders to an insane asylum. Only in rare cases did families capriciously abandon difficult relatives.
History and literature in western society are replete with colorful references to the demented elderly. Today there is a better understanding of brain damage and how it affects the elderly. Treatment of those with dementia has improved. Much still needs to be learned about the causes and treatment of dementia, but the medical community and society as a whole treat those with cognitive diseases with more respect and understanding than in earlier times.
Cross-cultural Considerations
Discussion of cross-cultural considerations needs to begin at home with American culture which values youth, beauty, vigor, accomplishment, skill, intellect, and knowledge. A culture that reveres youth and fears aging creates challenges for those experiencing dementia and for their caregivers. Many elders feel devalued and depressed, and many caregivers feel burdened and frightened (Carson & Goetz, 1980). Robin Marantz Henig, in her book The Myth of Senility, described western cultural attitudes toward the aging process,
The myth of senility is the stuff of our nightmares. “I believe people fear senility,
fear growing old and losing their minds and being put away, more than they fear
cancer,” says Robert Butler, (former) director of the National Institute on Aging.
A recent survey supports this: When asked how long they expected to live
and how long they hoped to live, the vast majority of adults wished for shorter
lifetimes than they thought awaited them (Henig, 1981, p. 3)
These attitudes toward aging are an aberration of Western industrialized culture and are not experienced in most cultures throughout the world which respect and value the elderly. Chinese, Indian, American Indian, and Jewish cultures, as well as the cultures of developing countries, traditionally hold their elders in high esteem as essential members of the community.
Medical doctors in China share the Western approach to dementia as a disease, but the average Chinese citizen does not. They see dementia as a normal part of aging, and since many elderly parents live with their grown children and their grandchildren, the elderly are not seen as separate and different from the rest of the family. Chinese elders are more secure and happy and their families less frightened by the concept of dementia. Charlotte Ikels, an anthropologist at Case Western Reserve University in Cleveland, Ohio, reported her research on the elderly in China in the Journal of Cross-Cultural Gerontology (2002). She attributes the normalization of dementia in the culture to not only intergenerational co-residence, but more importantly to four cultural components: the heart/mind connection, the nature of morality, the nature of the self, and filial piety. Ikels concluded that the Chinese approach to aging “preserves the self far longer and rewards the caregiver more profoundly than is the case in the US” (Ikels, 2000).
These findings correlate with a study done in the United States in a Chinese-American community. It is difficult to obtain elderly Chinese subjects for research. A team from the Department of Psychiatry at the University of California Medical Center interviewed 25 Chinese families to explore the cultural impact of the recruitment process for research projects. They discovered four cultural factors: 1) dementia is not viewed as a disease, but is regarded as a normal part of aging; 2) the families viewed research as harmful because it might cause worry in the elderly; 3) dementia that has progressed into Alzheimer’s Disease is stigmatized in the Chinese community and 4) research was viewed by the families as an intrusion that doesn’t result in any advantage to the elderly participants (Hinton, Guo, Hillygus & Levkoff, 2000).
The 10/66 Dementia Research Group conducts studies in developing countries. Their findings consistently indicate strikingly lower prevalence rates of dementia in Africa and Asia as compared to Europe (10/66 Dementia Research Group, 2000).
Dr. Hugh C. Hendrie of Indiana University School of Medicine conducted a cross-cultural prevalence study comparing dementia incidence among African-Americans living in Indianapolis and Africans living in Ibadan, Nigeria. African-Americans had a 3.4 % incidence and Nigerians a 1.35 % incidence of dementia, with corresponding rates of 2.52 % and 1.15 % for Alzheimer’s disease. Dr. Lindsay A. Farrar of Boston University School of Medicine wrote, “(This) remarkable study favors the idea that environmental or cultural factors, in concert with genetic predisposition, strongly influence susceptibility to Alzheimer’s disease.” (Journal of the American Medical Association, 2001).
American Indians do not necessarily consider dementia to be pathological, but rather a natural aspect of aging or even a special supernormal gift. J. Neil Henderson and L. Carson Henderson of the University of Oklahoma Health Sciences Center and the Two Hawk Institute of Oklahoma City respectively, conducted a study of an American Indian family with an 84-year-old elder. She had symptoms of what the medical community would call dementia. However, her family regarded her state of mind as a gift because she could communicate with the supernatural world, a skill prized in native cultures (Henderson & Henderson, 2002).
A study conducted by the Department of Urban and Regional Planning at the University of California in Irvine considered the role of culture in designing environments for people with dementia, focusing on Russian Jewish immigrants.
Kristen Day and Uriel Cohen explored aspects of culture relating to people with dementia, including cultural group history, life experiences, assets, beliefs, values, caregiving practices, activities, and preferences. Their hypothesis contended,
Cultural heritage is an essential enduring aspect of self-identity for older
adults, including those with Alzheimer’s disease and other dementias.
Culture may serve as a therapeutic barrier or as a therapeutic resource
in caring for this population. Cultural heritage is currently under used
as a therapeutic resource in environments for people with dementia and
for other older adults (Day & Cohen, 2000).
Cross-cultural factors in the treatment of people with dementia need more study. A research review on the reasons for under-study in this area entitled The Cultural Influence of Values, Norms, Meanings, and Perceptions in Understanding Dementia in Ethnic Minorities concluded that “family caregiving processes and help seeking are influenced by the meanings family members assign.” The researchers suggest “incorporating cultural and social information about diverse groups into future models of research and practice.” (Dilworth-Anderson, P. & Gibson, B., 2002).
A study of cross-cultural bias in testing for dementia was conducted by Gary T. Miles of the Department of Veterans Affairs, Pal Alto Health Care System, Palo Alto, California. In a chapter entitled Neuropsychological Assessment of African-Americans, Miles asserted that levels of acculturation and assimilation of patients with the dominant culture is often overlooked. Patients with dementia and other conditions are over-pathologized when written language is a key instrument in screening tests. He suggests that regional dialects and nomenclature differences could result in poorer performances on tests (Miles, 2002).
To meet the increasing demand for cross-cultural research on dementia, more effective testing instruments have been developed that account for documented educational and cultural biases existing in earlier instrumentation. Three new cross-cultural cognitive screening instruments are the Cognitive Abilities Screening Instrument (e. L. Teng et al, 1994), the Cross-Cultural Cognitive Examination (G. Glosser et al, 1993), and the Community Screening Instrument for Dementia (K. S. Hall et al, 1996). Revised methods for cross-cultural test construction include “selection and adaptation of individual test items, item analysis, defining item bias, psychometric methods to reduce
bias, specific adaptations to instruments to ‘control’ for education differences, validity and reliability studies.” (Wolfe, 2002).
Standard Treatment Approaches
The DSM-IV considers the treatment of dementia to be determined by underlying cause and timely intervention. Severity of the condition and available social support are considerations. Additionally, advanced dementia patients may be harmed in accidents if they are not mindful of their surroundings. They are also more prone to potentially fatal infectious diseases.
Current standard treatments are limited and often involve prescription of anti-depressant drugs. The elderly are often sensitive to otherwise normal dosages of prescription drugs. Dr. Robert S. Small, a physician specializing in geriatrics in Williamsville, New York, considers over-medication of the elderly to be a major drug
problem in America. He states, “Even one drug that’s not right for a person can impair function and decrease enjoyment of life. Imagine what five – or ten, or fifteen – can do.”( Small, 1997). Some medications list mental confusion as a possible side-effect.
Research on dementia is in the early stages. Scientists are searching for drugs to treat Alzheimer’s disease, with no real break-through to date. Most brain function is still a mystery and journal literature commonly refers to research on the causes of dementia, with little knowledge of how to treat it or insight into sufferers’ personal experiences.
In a meta-analysis of 65 research articles, researchers from the School of Psychology, University of Wales, Bangor, UK reported little attention given to the issues and concerns of people with dementia and few reliable diagnostic instruments to assess the onset of dementia in the early stages when intervention is the most effective (Midence & Cunliffe, 1996). The purpose of this overview of journal literature was to examine the impact of dementia on the sufferer and then review available treatment interventions.
Clinical features of dementia include memory loss, intellectual difficulties, behavioral changes, impaired language skills, disorientation, impaired visuospatial abilities, personality changes, increased excitability, urinary incontinence, sleep disturbances, decreased food intake, and depression. They noted that depression most often resulted from perceived failure in life caused by cognitive impairment, rather than as a biological consequence of impairment. Mood disorders were much more common than actual depressive disorders, although in progressed cases there was increased incidence of paranoid delusions, misidentification syndrome, and hallucinations.
The most effective standard treatments for dementia are behavioral techniques including operant training programs with social reinforcement, music and art therapy, reality orientation, reminiscence therapy, validation therapy, and sensory integration therapy. The authors also concluded that it is important to inform dementia patients about their condition as early in their diagnosis as possible and to provide careful and sensitive psychological follow-up care (Appendix, Part B).
Another article entitled A Biopsychosocial Perspective on Behavior Problems in Alzheimer’s Disease described the importance of a holistic biopsychosocial approach to treatment of behavioral problems in Alzheimer’s disease and other dementias (Caron & Goetz, 1998). The authors consider current understanding of behavioral problems with dementia patients to be incomplete. Most problems are explained using neurologic, psychological, and person-environment fit models. These studies lack a holistic approach to understanding behavioral problems because they ignore investigation into the lived experience of people suffering from dementia. They suggest drawing from the realms of the material, biomedical, psychological, relational, family, social, community, culture, existential/spiritual, and caregivers to give a balanced, holistic vision of patients’ behaviors.
The authors compare the reductionist paradigm of western medicine to the systems theory approach which looks for complex interactions of multiple causes for disease. They used the Ecosystemic Biopsychosocial Grid (EBG) to analyze systems theory. EBG utilizes goal setting for care of those with dementia. Two factors are considered: resources which facilitate goals and barriers which block goals. Resources and barriers are examined across ten realms: material, biological, psychological, relational, familial, provider network, social network, community, cultural, and spiritual. The goal is to find
a comfort zone for patients with demands and fulfillment of those demands balanced.
The EBG grid provided a format for understanding the lived experience of dementia with the goal of improving quality of life. This theoretical paper suggested that valuing and understanding people experiencing dementia might improve their condition. Perhaps behavior based on little understanding of the experience of dementia creates a situation where the disease becomes worse instead of stabilized or even improved (Appendix,
Part C).
There are hopeful indications of a more holistic treatment approach. The National Institute of Aging, in its Action Plan for Aging Research, lists four goals for 2001-2005:
Goal A: Improve health and quality of life of older people
Goal B: Understand healthy aging processes
Goal C: Reduce health disparities among older persons and populations
Goal D: Enhance resources to support high quality research (National Institute of
Aging, 2001).
Dr. Robert S. Stall gave advice on his website to other physicians treating the elderly,
I once saw a patient who was about to turn 100 years old. She had pain in her
right knee. I asked what she thought was wrong.
What do you expect at my age? she asked, shrugging her shoulders.
How is your left knee? I replied.
Just fine, thank you, she answered.
Then why doesn’t your left knee hurt? Isn’t it the same age as your right knee? I said. She smiled too and understood what I meant.
Think about it. Often. I do. It keeps me on the right track when I try to help my
older patients. Don’t sell older people short. There is always something that can
be done to help an older person lead a happier, more functional life, even in
extreme old age (Stall, 1997).
Alternative Treatment Approaches
Alternative and integrative medicine offer many promising avenues of treatment for people with dementia from the standpoints of diet, vitamin and mineral supplements, herbs, chiropractic care, exercise, music and art therapy, pet therapy, and societal attitude changes toward the aging process.
The alternative approach links good cognitive functioning with proper diet. The adage you are what you eat is an operating principle of alternative medicine. A traditional Mediterranean diet is highly recommended to support longevity and optimal health by several proponents of integrative medicine. Dr. Andrew Weil, director of the program in Integrative Medicine at the University of Arizona, and Dr. Edward L. Schneider, Dean of the Leonard Davis School of Gerontology at the University of Southern California, recommend the Mediterranean diet, which has proven to promote cardiovascular and brain function. The Mediterranean diet highlights olive oil, salmon, whole grains, vegetables such as spinach, tomatoes, broccoli, cauliflower, and cabbage; fruit such as oranges, blueberries, strawberries, and raspberries; fat-free yogurt, dark chocolate, green tea, and moderate amounts of red wine (Schneider, 2003).
Dr. Weil observed that elderly people tend to lose their taste for heavy animal protein and rich sauces, and often prefer a lighter diet such as the Mediterranean diet (Weil, 1997, p. 199). Olive oil is an important aspect of this diet because it is a monounsaturated fat which the body can metabolize efficiently with no build-up of fat or cholesterol in the bloodstream, proven contributors to heart disease, and hypothetically to Alzheimer’s disease. Many other foods on the Mediterranean diet such as oranges, blueberries, red wine, dark chocolate, and green tea have anti-oxidant properties which cleanse the body of toxins. High-fiber whole grains, fruits, and vegetables enable good digestion and elimination, often challenging aspects of health for the elderly. Alternative medicine takes a holistic viewpoint towards health. Cognitive functions are not separate from over-all physical health, as well as emotional and psychological health.
Vitamin and mineral supplements are under investigation by both mainstream and alternative medicine researchers. These substances include choline, lecithin, vitamin E, nicotinic acid, thiamine, vitamin B-12, folic acid, calcium, vitamin D, and magnesium. Herbs such as ginko biloba, St. John’s Wort, vinpocetine from the periwinkle plant, elk velvet from antlers, and huperzine derived from Chinese club moss also indicate positive effects on brain function. These natural substances are being researched by the National Institutes of Health within the National Center for Complementary and Alternative Medicine and the National Institute on Aging. Other research is being conducted by Johns Hopkins University, and MN Anderson Cancer Center, The Department of Integrative Medicine at the University of Arizona (Malugani, 2000), and by practioners of integrative medicine such as Dr. George W. Kukurin, a chiropractor from Pittsburgh, Pennsylvania who also has neurological training from Harvard Medical School.
Dr. Kukurin reported a study in which chiropractic care changed the maps of the brain, creating changes in blood flow to regions of the cortex and thereby altering the metabolism and organization of the brain. Hypometabolism of the brain is one theory under study as a cause of Alzheimer’s disease (Kukurin, 2003).
Exercise is vital to maintenance of mental clarity and healthy aging. In his book, Ageless, Dr. Schneider refers to research on the role of exercise in successful aging. A study of 6,000 Canadian seniors determined that any type of exercise helped to keep mental functioning intact, and concentrated exercise reduced by 50% the incidence of cognitive impairment and dementia, and by 60% the incidence of Alzheimer’s disease (Schneider, 2003).
British psychologists Tom Kitwood, Bob Woods, and Una Holden, and American Stephen Post have written extensively on the need for changing Western attitudes toward the elderly. Post suggests a new perspective away from “hypercognitive” culture, which views those with dementia as nonpersons, into a culture more accepting of the natural aging process and dementia. Woods advocates patience and skilled listening in dealing with those with dementia so they may participate in their own care decisions. Kitwood suggests “that dementia might not always be simply associated with decline and loss of function, but that in some instances there might be more positive long-term changes, with the person even showing indications of growth and development.” Woods described Kitwood’s philosophy, “Kitwood has called for a change of culture in dementia care, away from the old culture imbued with its malignant social psychology, to a new culture where person-centered care is developed and practiced” (Woods, 1999).
To this end, alternative approaches such as the Eden Alternative, created by Dr. Bill and Judy Thomas, are improving the landscape of eldercare. Dr. Thomas is a Harvard trained physician who, with his wife Judy, designed a program to teach others how to create environments in which elders thrive, complete with warm and homey living spaces filled with plants, animals, and children. Eden Alternative’s concept of care for the elderly is as follows:
The core concept of The Eden Alternative is strikingly simple. We must teach
ourselves to see environments as habitats for human beings rather than
facilities for the frail and elderly. We must learn what Mother Nature has to
teach us about the creation of vibrant, vigorous habitats.
The Eden Alternative shows us how companion animals, the opportunity to give
meaningful care other living creatures, and the variety and spontaneity that mark
an enlivened environment can succeed where pills and therapies fail. Our goal is
to help people weave together the philosophy of The Eden Alternative with the real
world of daily practice (Eden Alternative, 2003).
Dionna McLean is a LPN and activities therapy aide at Maplewood Nursing Home and Assisted Living Apartments in Westmoreland, New Hampshire, which uses Eden Alternative practices. McLean directs the pet and intergenerational therapy programs. She described Maplewood,
It’s about dignity, respect, honor, and most of all the highest quality of life
possible…If there’s an opportunity to bring a group to any particular event,
we do our utmost to make it happen – music, food, sports, etc. Honestly,
there are so many activities we offer our residents that it’s common they’ll
try something for the first time in their life at Maplewood, whereas they
wouldn’t have ever thought about it prior to coming to our facility. Now,
that’s awesome!” (Appendix, Part D).
References
10/66 Dementia Research Group (2000). Methodological issues for population-based research into dementia in developing countries: a position paper from the 10/66 Dementia Research Group [Abstract]. International Journal of Geriatric Psychiatry 15 (1), 21-30. Retrieved April 2, 2003 from the World Wide Web: http://firstsearch.oclc.org/WebZ This group promotes research collaboration on dementia in developing countries.
Alzheimer’s Association, Massachusetts Chapter (2000). Alzheimer’s disease facts & statistics. Retrieved February 25, 2003 from the World Wide Web: http://www.alzmass.org/statistics.htm This website provides statistics on Alzheimer’s disease.
Alzheimer’s Disease Education & Referral Center (ADEAR) (2003). General information. Retrieved February 25, 2003 from the World Wide Web: http://www.alzeheimers.org/generalinfo.htm This website is the on-line education and
referral center of the National Institute on Aging.
Alzheimer’s Society (2003). Dementia statistics. Retrieved February 25, 2003 from the World Wide Web: http://alzheimers.org.uk/about/statistics.html This British website gives international statistics on dementia.
American Psychological Association (2003). Mental health: a report of the Surgeon General; executive summary. Retrieved February 25, 2003 from the World Wide Web:
http://www.apa.org/ppo/issues/ebsmhreport.html This is the website of the American Psychological Association.
Dementia 23
American Psychiatric Association (2000). Dementia. DSMV-IV-TR (pp. 147-171). Washington, DC: American Psychiatric Association. This is a diagnostic tool for identification of psychological disorders.
Azar, B. (2002). Use it or lose it? Monitor on Psychology 33 (5). Retrieved February 25, 2003 from the World Wide Web: http://apa.org/monitor/may02/useit.html This magazine is published by the American Psychological Association.
Caron, W., & Goetz, D. R. (1998). A biopsychosocial perspective on behavior problems in Alzheimer’s disease. Geriatrics 53, S56-S60. Retrieved April 2, 2003 from the World Wide Web: http://firstsearch.oclc.org/webZ This qualitative article from a refereed journal examines human rights issues of the elderly.
Day, K., & Cohen, U. (2000). The role of culture in designing environments for people with dementia: a study of Russian Jewish immigrants [Abstract]. Environment & Behavior 32 (3), 361-399. Retrieved April 2, 2003 from the World Wide Web: http://firstsearch.oclc.org/WebZ These designers examine the use of cultural heritage as a therapeutic resource in environments for people with dementia.
Dilworth-Anderson, P., & Gibson, B. (2002). The cultural influence of values, norms, meanings, and perceptions in understanding dementia in ethnic minorities [Abstract]. Alzheimer Disease & Associated Disorders 16 (2), S56-S63. Retrieved April 2, 2003 from the World Wide Web: http://firstsearch.oclc.org/WebZ . This article considers the cross-cultural attitudes of caregivers towards people with dementia.
Eden Alternative (2003). What is Eden? Retrieved April 5, 2003 from the World Wide Web: http://www.edenalt.com/about.htm This website describes an alternative approach to eldercare that includes green environments for the elderly and teaching principles of respectful and humane care which include plants, animals, and children.
Henderson, J. N., & Henderson, L. C. (2002). Cultural construction of disease: a “supernormal” construct of dementia in an American Indian tribe [abstract]. Journal of Cross-Cultural Gerontology 17 (3), 197-212. Retrieved April 2, 2003 from the World Wide Web: http://firstsearch.oclc.org/WebZ . This study examines the assignment of meaning for dementia to be normal but special within American Indian tribal beliefs.
Henig, R. M. (1981). The myth of senility; misconceptions about the brain and aging. New York: Doubleday. This book presents ground-breaking research and understanding to dispel prejudice against the elderly and the process of aging. The forward was written by Dr. Robert N. Butler, former director of the National Institute on Aging.
Hinton, L., Guo, Z., Hillygus, J., & Levkoff, S. (2000). Working with culture: a qualitative analysis of barriers to the recruitment of Chinese-American family caregivers for dementia research [abstract]. Journal of Cross-Cultural Gerontology 15 (2), 119-137. Retrieved April 2, 2003 from the World Wide Web: http://firstsearch.oclc.org/WebZ . This abstract examines culturally based conceptions of dementia in the Chinese-American elderly.
Holstein, M. (1997). Alzheimer’s disease and senile dementia; 1885-1920: an interpretive history of disease negotiation. Journal of Aging Studies 11, 1-13. Retrieved March 5, 2003 from the World Wide Web: http://firstsearch.oclc.org/WebZ This article traces the progression in understanding of dementia in medicine and psychology.
Ikels, C. (2002). Constructing and deconstructing the self: dementia in China [abstract]. Journal of Cross-Cultural Gerontology 17 (3), 233-251. Retrieved April 2, 2003 from the World Wide Web: http://firstsearch.oclc.org/WebZ This abstract examines the Chinese cultural approach to dementia.
Keith, J. R., Puente, A. E., Malcolmson, K.L., Tartt, S., Coleman, A. E., & Marks, Jr., H. F. (2002). Assessing postoperative cognitive change after cardiopulmonary bypass surgery. Neuropsychology 16 (3), 411-421. Retrieved February 22, 2003 from the World Wide Web: http://firstsearch.oclc/WebZ This quantitative journal article examines statistical methodology in the study of cognitive decline after cardiopulmonary bypass surgery.
Kukurin, G. (2003). Alternative medicine remedies for dementia. Retrieved April 22, 2003 from the World Wide Web: http://alt-compmed.com/NewAltNervous.htm This is Dr. George Kukurin’s website which includes suggested alternative treatments for dementia.
Malugani, M. (2000, March 20). Breaking with tradition; research institutions putting alternative medicine to the test. Retrieved April 22, 2003 from the World Wide Web: http://www.nurseweek.com/features/00-03.html This article describes mainstream scientific research into alternative medicine treatments.
Midence, K., & Cunliffe, L. (1996). The impact of dementia on the sufferer and available treatment interventions: an overview. The Journal of Psychology 130, 589-602. Retrieved February 22, 2003 from the World Wide Web:
http://firstsearch.oclc.org/WebZ This is a meta-analysis journal article reviewing the impact of dementia and common interventions.
Miles, G. T. (2002). Neuropsychological assessment of African Americans [abstract]. In F. R. Ferraro (Ed.), Minority and cross-cultural aspects of neuropsychological assessment (pp. 63-77). Bristol, PA, US: Swets & Zeitliinger. This chapter discusses cultural biases in testing of African Americans for dementia and other diseases.
Montigny, Edgar-Andre (1995). “Foisted upon the government”: institutions and the impact of public policy upon the aged. The elderly patients of Rockwood Asylum, 1866-1906. Journal of Social History 28, 819-36. Retrieved March 5, 2003 from the World Wide Web: http://firstsearch.oclc.org/WebZ This article describes early inhumane treatment of the elderly and family reactions.
National Institute on Aging (2001). Action plan for aging research: strategic plan for fiscal years 2001-2005. Retrieved April 23, 2003 from the World Wide Web: http://www.nia.nih.gov/strat-plan/2001-2005 This plan outlines the research goals of the National Institute on Aging in both allopathic and alternative approaches.
Neurology Channel (2003). Dementia. Retrieved February 25, 2003 from the World Wide Web: http://www.neurologychannel.com/dementia/ This website fact-sheet gives an overview, types, incidence and prevalence, and risk factors of dementia.
Neurology Channel (2003). Dementia incidence is lower in Africans than in African Americans. Journal of the American Medical Association 285, 739-747, 796-798. Retrieved from the World Wide Web:
http://www.neuologychannel.com/NeurologyWorld/02132001_lower.shtml This Reuters Health article describes a dementia study comparing Nigerians and African Americans.
Schneider, E. (2003). Ageless: a six-point plan for controlling aging and staying youthful forever. New York: Rodale. Retrieved April 22, 2003 from the World Wide Web: http://www.healthandage.com/html/res/ageless/content/page3-4.html This book excerpt examines the role of physical fitness in aging.
Stall, R. S. (1997). Key principles of geriatric care. Retrieved April 22, 2003 from the World Wide Web: http://acsu.buffalo.edu/~drstall/keyprinciplesofgeriatrics.html
Dr. Stall is a medical doctor promoting alternative medical care and elimination of ageist attitudes towards the elderly.
Sue, D., Sue, D. E., & Sue, S. (2000). Understanding abnormal behavior (6th ed.), 446-448. Boston: Houghton Mifflin. This is a college-level textbook on abnormal psychology.
Tisdel, N. E. (2003, May 2-6). Email interview with Dionna McLean, an activities therapy aid and LPN working at Maplewood Nursing Home in Westmoreland, NH which uses the Eden Alternative approach to care for the elderly.
Wolfe, N. (2002). Cross-cultural neuropsychology of aging and dementia: an update [abstract]. In F. R. Ferraro (Ed.), Minority and cross-cultural aspects of neuropsychological assessment (pp. 285-297). Bristol, PA, US: Swets & Zeitlinger. This chapter updates the field of cross-cultural cognitive screening instruments.
Woods, B. (1999). The person in dementia care. Generations 23 (3), 35-39. Retrieved April 2, 2003 from the World Wide Web: http://firstsearch.oclc.org/WebZ This article gives insight into the human rights of the elderly with dementia, emphasizing their right to be treated as people aside from the aging process.
Weil, A. (1997). 8 weeks to optimum health; a proven program for taking full advantage of your body’s natural healing power. New York: Knopf. Dr. Weil is a Harvard-trained physician on the forefront of integrative medicine development. He directs the Integrative Medicine Program at the University of Arizona.
Appendices
(Full text of sample journal articles and online interviews.)