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CAREGIVING & ALZHEIMER'S DISEASE.
Term Paper ID:28406
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Essay Subject:
Extensive survey of literature & studies focusing on caregiver & impacts of AD on family. Discusses causes & consequences of disease; symptoms; care options; financial considerations; psychosocial impact; cultural factors; coping strategies.... More...
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42 Pages / 9450 Words
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Paper Abstract:
Extensive survey of literature & studies focusing on caregiver & impacts of AD on family. Discusses causes & consequences of disease; symptoms; care options; financial considerations; psychosocial impact; cultural factors; coping strategies.
Paper Introduction:
The Problem
Introduction
According to Teel et al. (1999), Alzheimer's disease is the most prevalent cause of dementia at the present time. That prevalence is expected to increase during the next fifty years because of increased longevity and an aging population. It is estimated that the prevalence may quadruple during that time (Brookmeyer et al., 1998). Even now, prevalence rates for the population over the age of 85 is between 25 percent and 48 percent (Larson et al., 1992). Finally, nursing home admission rates are high for Alzheimer's and average lengths of stay are long, therefore costly.
Nonetheless, at the present time, almost 80 percent of care
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There are two problems with these high levels of fatigue and lowenergy. Thus, positive reappraisal, by itself, may not be as meaningful as theauthors seem to assert. However, they may spend years in ahome setting being cared for by family and friends. Loyalty to the family is part of the system,along with family hierarchy, respect, filial piety, harmony, and shame.These are core values that help to shape the family system from thebeginning, and influence the shape of caregiving, too. While there are currently treatments that can slow thecourse of the disease and ameliorate some of the symptoms, there is nocure. The caregivershad been providing services for a average of 2.7 years. (1999). Who, then, can judge? Review of the LiteratureIntroduction The intention in this literature review is to lead the reader throughthe vast literature on Alzheimer's disease, while providing a snapshot bothof the patient suffering from the disease and the caregiver. For instance, Barusch (1988) reported thatapproximately 37 percent of all caregivers for impaired older adults arethemselves over the age of 65 and provide caregiving with informal orminimal formal help from others. Returning to Kitwood's (1997)perspective, individuals with Alzheimer's are first of all persons, notdisease states. Pipher'sapproach actually fits quite well with a community approach to publichealth and well-being, since it requires the individual, as well as thecommunity, to face problems and reality squarely and develop somecompassionate and effective responses to inevitable suffering and death. Ethnic minorityperspectives on dementia, family caregiving, and interventions.Generations, 23(3), 4 -45. For example, African-American families seemto have a greater tendency to retain extended social networks comprised offamily and friends who are almost like family members who contribute tocaregiving. Eighteen of the caregivers were women, while four were men.The interviews were approximately one and one-half hour long. This is a very different perspective on caregiving. Murray et al. Finally, recent work in biochemistry has identified certain proteins whichmay be associated with the disease process. They may become almost completely isolated from thecommunity because they have to stay home with an Alzheimer's patient who isunable to perform adequately in social situations in public. A more important genetic risk factor in the population seems to beApolipoprotein E (APOE) gene which may account for up to 17 persons per 1 of the prevalence of Alzheimer's in the general population. Wu, H., Wang, J., Cacioppo, J.T. and Anderson, N. Journal of Marriage and the Family, 52, 1 15-1 24. George and B.Lebowitz, (eds.) Stress effects on family caregivers and Alzheimerpatients. Positive reappraisal needs a basis in reality,perhaps, which is provided by an active intervention program that createshope, positive interactions, and reduced behavioral problems. That prevalence isexpected to increase during the next fifty years because of increasedlongevity and an aging population. WesternJournal of Nursing Research, 21(4), 498-52 . There was adifferential influence of state variables based primarily on maritalstatus. Failure to do the emotionalwork according to the "rules", impacts the caregiver's sense of self andmay erode confidence and esteem. 5thAnnual Conference of the International Society for Quality of LifeResearch, November 15-17, 1998, Baltimore, Maryland. What they concluded was that there does seem to be a relationshipbetween caregiver beliefs about obtaining help to care for relatives withAlzheimer's disease, but that there are two approaches to dealing withthis. Theconcept of harmony is taught to children to reinforce low conflict withinthe family, moderation, humility, self-discipline, and patience. For example, any of the following may beimportant domains to consider in thinking about quality of life for olderpeople with Alzheimer's and their caregivers: (a) health statuscharacteristics, (b) clinical characteristics, (c) physical environmentalfactors, (d) social environmental factors, (e) socioeconomic factors, (f)personal autonomy factors, (g) subjective satisfaction, (h) personalityfactors, and (i) cultural factors. In the assessment phase, the researchers discovered that the rate ofbehavioral deterioration depended upon the treatment group the patient wasinvolved with. Itis not loaded in one direction. Psychopharmacological treatment of dementia.Research on Social Work Practice, 8(4), 452-474. The taskfor health care providers is to help them identify possible helpers and thekinds of help those individuals could acceptably provide. First, strategies could be tried that would attempt to changecaregiver beliefs in order to limit or eliminate their negative effects.Second, the beliefs could be recognized as vital in the family system andservice providers work within the parameters of those beliefs in devisingplans for the family (Smyth and Milidonis, 1999). What seems problematic about this study is that Corbeil et al. 2. Appraisal, coping and socialsupport as mediators of well-being in black and white Alzheimer's familycaregivers. As the researchers and physicians workto extend life, they are also extending the likelihood of a burgeoningAlzheimer's population. There are optimists who believe that a cure will be discovered inthe near future, but that fact is that there is no cure and may not be onefor some time to come. Normativeapproaches need to be wedded to economic, social, and phenomenologicalapproaches in order to more clearly assess the condition of patients andcaregivers and determine their needs within a community context.Care options and financial considerations There are several different care options, each with differentimplications for the family of the individual with Alzheimer's disease.The main options are long-term care, nursing homes, adult foster homes, andhome care, with or without home health care assistance or health aides.Obviously, the least expensive - and one which many people still opt for -is home care without home care assistance, or with minimum paid home careassistance. Behavioral symptoms, or noncognitive symptoms, can cause as manyproblems to both the patient and the caregiver. Theauthors note that since the mechanism of Alzheimer's is not completelyunderstood, it is important to use many different sources and multiplemarkers in order to arrive at a good, early diagnosis of Alzheimer's(Almkvist and Winblad, 1999). However, with anaging population, and no cure as yet available or on the near horizon, itis important to develop an understanding of all the elements of caregiving,including positive ones. Their mean age was 74 years.On the Clinical Dementia Rating Scale, 49 percent rated mild, 25 percentrated moderate, and 26 percent rated severe to profound in terms ofdysfunction (Smyth and Milidonis, 1999). Health CareFinancing Review, 2 (4), 67-85. The ProblemIntroduction According to Teel et al. (1992). Light, N. They noted that much recent progresshas been made and mutations have been identified in the beta-amyloidprecursor protein gene (APP) and in two homologous genes presenilin 1 (PSEN-1) and presenilin 2 (PSEN-2). studies ranging from1984 to 1999. On the other hand, a new psychological model has been developed byKitwood (1997). (1999) concluded thatthe experience of caregiving for spouses with Alzheimer's had a lot ofcommonalities, even though there were significant differences in provisionsfor care of older people in the different countries. One of the physical effects for caregivers is increased fatigue.Tell et al. In other words, how did theindividual caretaker place Alzheimer's in context and find somethingmeaningful from the experience of living with, or working with, a loved onesuffering from such a disease (Farran et al., 1999). The study looked at the experience of 2 co-resident spouses ofpeople with NINCDS-ADRA who had been diagnosed within the past three years. It also ensured some positive interactions betweencaregiver and patient, and some successes, along with all the frustrations. Haley et al. In looking at this instrument, it does seem to be a helpful one. Wallhagen, . The greatest risk factor forAlzheimer's disease is simply age. The cost ofinstitutional care of Alzheimer's disease: Nursing home and hospital usein a prospective cohort. They may experience significantfinancial burdens. They identifiedcaregiving stressors, such as memory and behavioral deficits in thedementia-diagnosed patients had indirect effects on the subjective well-being outcomes for the caregivers. However,the result is that the individual's entire life is impaired. (1999).Intervention effects on dementia caregiving interaction: A stressadaptation modeling approach. Hispanic families in the 198 s: A decade ofresearch. 3. (1995). Those who did not fulfilltheir role appropriately would be shamed, and would probably feel shame andsuffer from the knowledge that they had lost face in their family andcaused their family loss of honor, too. In thesecond phase of the disease, which is the longest stage, the individual ischaracterized by both short-term and long-term memory loss, loss of socialskills, loss of language skills and the ability to think abstractly, andloss of the ability to perform activities of daily living adequately.Personality changes occur, while behavior becomes erratic. The authors found some differences based on racial background,with the black family caregivers able to call upon stronger and moreextensive social support networks.Doing family caregiving well Farran et al. Teel, C.S., Press, A.N., Lindgren, C.L., and Nichols, E.G. According to the authors, the results were remarkably similar cross-nationally. Thereis less information about coping strategies, satisfactions of caregiving,and finding meaning in caregiving for family members with Alzheimer's.However, in general, there is a wealth of information through books anddatabases, including such sources as ProQuest and PubMed (associated withMedLine).Organization of the Literature Review The narrative of the literature review begins with a brief overviewof Alzheimer's disease, its apparent causes, and progression. Hispanicfamilies are more frequently Catholic, while African American families aremore frequently Protestant, but both place God at the center, in control ofeach human being's destiny, and with a final plan. What the authors discovered was quite interesting. (1999) reported on one such response, noting that the chronicstress of spousal caregiving for patients with Alzheimer's disease isassociated with poor immune system response. The caregivers were members of the CaregivingCore of the university Hospitals of Cleveland/Case Western ReserveUniversity Alzheimer Disease Research Center and the persons withAlzheimer's disease in ADRC clinical Core. (1999). Caregivers suffer from fatigue, depression, despair, confusion,grief, anger, and other problems. Barusch, A.S. This may include both the patient and the patient'scaregiver. It is particularly related to theindividual's development and qualifies as psychological or emotional work. This is a difficult approach touse with Alzheimer's, because the disease makes it difficult for people tocommunicate or speak about the meaning of their lives. TheJournals of Gerontology, 54A(4), M212-M215. Eur. There are families so isolated that they would reject all help,except from inside their own family. It acknowledges that there are difficult,negative parts of caregiving, but also allows the caregiver to reflect uponhow they find meaning even in times of suffering and witnessing suffering. The problems of aging are too often seen as individualproblems, or family problems, rather than problems of the whole community.This is congruent with the increased individualism and mobility of Americansociety, but it is not particularly practical or helpful. In other words, the family's needscan take precedence, allowing the individual to set aside personal goals orneeds in order to care for family members. Corbeil et al. Finally, nursing home admission rates arehigh for Alzheimer's and average lengths of stay are long, thereforecostly. Inone exploration of that decision, Miller et al. (1993). As noted earlier, with increasingage, the prevalence of Alzheimer's increases, with extremely highprevalence after the age of 85. If they fail to do the emotionalwork the first time, they may succeed in the next instance, gaining greatermaturity and contributing to the overall success of the family caregivingsituation.Coping strategies Given the stresses that emerge from dealing with an adult individualsuffering from dementia, caregivers need to develop coping strategies thatenable them to manage stress effectively without becoming ill themselves. Caregiving is impacted by many factors, including race, ethnicity,income levels, personal attitudes, and the sense of meaning thatindividuals can derive from their experience with Alzheimer's. They assessed subjects atpreintervention and postintervention at both three and nine months.Results indicated that intervention group caregivers were more satisfiedwith the interaction with their impaired caregiver and the authorsattributed that to lessening of stress through increased used of positivereappraisal of the stressful situation. While it is not a job per se, norcertainly a career for the individual caregiver, it is part of theindividual's work of life or living. (1999). It is inadequate becauseit allows adult children and spouses to shirk the burden of caring forpeople they love and are bound to in significant relationship. There is someindication of differences in prevalence rates based on ethnicity (Dilworth-Anderson & Gibson, 1999).Purpose of the Study The purpose of this study is to survey the literature regardingcaregiving for individuals with Alzheimer's Disease in order to learn moreabout how caregiving can be successful, or meaningful, for those involvedwith the Alzheimer's patient.Importance of the Study This study is important because there is a lack in the literature ofa systematic assessment of meaningful, or positive, aspects of caregiving.Much of the focus is on the horror and burden of taking care of loved onessuffering from a difficult and long-term disease process. However, there were also some satisfactions expressed, generally relatedto the qualities which were also problematic. Even with functional criteria, the wording may need to bechanged so that Alzheimer's patients who have cognitive impairments, butphysical health, yet need constant supervision in order to perform tasks ofdaily living, are included in those criteria.Caregiver burdens and non-medical admissions It is difficult to get people to visualize the extreme burden ofgiving care to a patient with Alzheimer's as the disease progresses.Eventually, the caregiver must be aware of the movements of the Alzheimer'spatient at all times - 24 hours a day for seven days a week. To do caregiving well, from thisperspective, is not only to manage the care of the individual patient, butto learn from the experience and to grow emotionally. In the social model, Bond (1999) indicated, the approach emphasizesthe interpretation that Alzheimer's patients and their caregivers place ontheir own experience. This is costly to the caregivers themselveswho experience their own health and well-being deteriorating under theburden of caregiving.Statement of Problem The problem is that we live in a society that is not designed to carefor an immense aging population with dementia that demands 24 hour a daycare and attention seven days a week. Anotherpreclinical marker is selective impairment of episodic memory. In looking at service use, respondents were asked whether help hadbeen obtained in dealing with 28 different commonly needed tasks, and nineof those were selected for closer scrutiny, including such activities ashelp with bathing, dressing, eating, getting in or out of the tub, physicaltherapy, or other exercise. and Gibson, B.E. These include the A beta 1-42/43 metabolite of the amyloid precursor protein, among others. One of the more effective coping strategies was a positivereappraisal of the situation, or positive reappraisals of different events. Family members express griefand pain at the loss of the person they knew and are frustrated by thesteady deterioration and dependency of that person. and Winblad, B. She conducted semi-structuredaudiotaped interviews with eleven spousal caregivers and eleven adult-childcaregivers. These states varied considerably in terms of the characteristics of theirlong-term care systems. All of them participated in a semi-structured interviewwith open-ended questions about the experience of caregiving. Unfortunately, this would require a rethinking of community healthcare and an acceptance of limitation and mortality that does not seem tocurrently exist. Quality of life of people with dementia and theirinformal caregivers: Is this a measurable outcome in clinical trials. Most had education beyond the high school level and the medianannual household income was between $3 , and $39, . (1993) noted that their case managementmodel had to be applied differentially in different locales. What the researchers discovered was that there was a rank order ofvariables that mediated the depression levels, starting with gender and theseverity of the dementia. There is, for example, the economic approach to measuringquality of life, which depends upon economic theory using cost-utilityanalysis. Withouthelp, this is difficult, if not impossible, to accomplish. According to Kitwood, the focus needs to be on thepersonhood of the individual with Alzheimer's first and foremost. For example, as Bond(1998) indicated, many people think of Alzheimer's as a condition worsethan death itself. NY: Spring. As Bond (1998)pointed out, there are different perspectives on dementia and quality oflife concepts and issues. Journal of Applied Gerontology, 18(2), 222-238. (1989). According to Bond (1998), there are several different approaches toassessing quality of life, including the standard method of health-relatedquality of life. To expect that those beliefs would changeovernight and automatically because of a crisis is unreasonable. (1999) compared the perceptions of two groups of older adultsregarding their levels of fatigue. There are many effective caregiving strategies, including obtainingrespite from caregiving, setting limits or boundaries with the patient,finding a way to derive daily meaning and ultimate meaning from thesituation, and retaining one's own interests. Smyth andMilidonis (1999) examined another set of beliefs related to receiving helpand found significant relationship between normative beliefs aboutreceiving help and caregiver well-being. Murray et al. and Kawas, C. Good self-care is essentialfor long-term caregiving. Summary The etiology of Alzheimer's disease is not completely known. As a result, caregivers often suffer from extreme stress reactions.Wu et al. Mary Pipher (1998) made the same point in her most recent book aboutadult children learning to care for their aging, and dying, parents. This causes bothburdens and satisfactions for family members. Thus, caregivers expressedsatisfaction in continued reciprocity and mutual affection adcompanionship. Yet the patient is already affected by the Alzheimer's, makingjudgments and assertions unreliable and variable. They are not valuedas highly under this methodology when economists argue that health caremust be rationed. Under the biomedical model, the primary concern is the loss of normalityand the impact on the family caregivers. Typically, caregivers were spouses of the Alzheimer's patient, with48 percent wives and 31 percent husbands, although an additional 11 percentwere daughters, and 11 percent were sons and other relatives. Pearlin, L.I., Mullan, J.T., Semple, S.J. Problems and coping strategies of elderlyspouse caregivers. (1998). There are literally thousands of articles available in journalsdealing with the etiology of Alzheimer's disease and its consequences tothe patient. and Folkman, S. Certainly in the early stages of Alzheimer's, and atmoments later in the process, individuals may be able to provide aphenomenological perspective on their sense of their own quality of life. To Fox, eligibility criterianeed to be expanded to include, at a minimum, medical criteria, financialcriteria, functional criteria, behavioral criteria, and mental-statuscriteria. On the otherhand, the most significant factor for married persons with Alzheimer's wasthe number of home health agencies. Nonetheless, at the present time, almost 8 percent of care providedfor impaired elders in the community is still provided by family andfriends, not by any long-term care facility (Wallhagen, 1992). CHAPTER THREE CONCLUSION Implications of the Study There are certain implications that seem significant from the reviewof the literature. Position of the Author It is the position of the author that while teaching positiveappraisal methods or other coping strategies to caregivers of Alzheimer'spatients, much more is required to provide adequate health care. Welcome to the Alzheimer's Association. The reason the diagnosis of Alzheimer's has been sodifficult is that some of the early symptoms seem like signs of aging, suchas memory loss. Beyond that, whomakes the decisions about how to respond or what to do when it is deemedthat someone is suffering from low quality of life. Actually, it would be mostuseful for communities to come together to look at creating systems forlifelong wellness, including both prevention and caregiving elements inthose programs. Tol, J., Roks, G., Slooter, A.J., van Duijn, C.M. In other words, there is a large population of older adults sufferingfrom a chronic, progressive disease who are largely cared for by their ownspouses in the community with only informal, or minimal formal, supportfrom the community at large. A focus on coping strategies, culturaldifferences, and the way in which people find meaning in caregiving couldbe helpful in developing a more balanced approached to presentingAlzheimer's Disease to the public and to those individuals who are directlyaffected by it. (1995) used alongitudinal model to explore the effects of a multitreatment program forcaregivers. There are so many variablesinvolved in Alzheimer's disease caregiving. The active intervention was associated with decreased patientdeterioration, which is associated with less caregiver depression. Forexample, cultural values that shape caregiving include a value ofinterdependence, rather than independence or autonomy, a value of sharingresources between households to ensure that everyone is taken care of, andthe general belief that God is in control of one's life, has a plan, andultimately cares about the people involved (Dilworth-Anderson & Gibson,1999). However, it may also be true that individuals need to befaced with that sense of emotional failure so that they can learn from itand grow beyond it. Caregivers of thefrail elderly: A national profile. Callaway, J.T. (An allele is one variant of a gene. It seems as though this study connects with the study by Dilworth-Andersonand Gibson (1999) in recognizing that there are many different ways to dealwith Alzheimer's, and that can vary by culture, ethnicity, race, religiousbackground, and philosophical orientation. (1998) looked at the effectof health care system characteristics on the time to nursing home admissionfor persons with Alzheimer's disease. American Journal of Public Health, 88(9), 1337-1342. This is an extremely small sample, althoughacceptable for a qualitative study. Stone, R., Cafferata, G.L., and Sangl, J. Family cohesion was a significantcontributor to levels of caregiver depression, but it was not emphasized inthe report on the research study. In terms of caregiving for care professionals, the Alzheimer'sassociation has provided new training opportunities. In what seems a commonsensical result, thecaregivers reported more fatigue, less energy, and more sleep difficultythan did control participants. (1996). In otherwords, case managers needed to take into account the belief systems oftheir clients in order to help them help themselves more effectively. Further, Dilworth-Anderson andGibson (1999) indicated that cultural values emphasize expressingcompassion and sensitivity within the family. Thehealth of two individuals is impacted by the current inadequate level ofcare for Alzheimer's disease in the community. They also experience satisfaction withproviding care for someone they love. (1988). At the same time, there is a burgeoning population of Alzheimer'spatients, and a veritable explosion of Alzheimer's anticipated during thenext fifty years. Brookmeyer, R., Gray, S. et al. Projections ofAlzheimer's Disease in the United States and the public health impact ofdelaying disease onset. Toher, adulthood was not complete without the experience of caregiving, andthose who failed to engage with that necessary task, avoiding sickness admortality, failed to reach full adulthood. Wu et al.(1999) note that these stressed caregivers have 5 -6 percent lessexpressed growth hormone mRNA than members of the control group, reducingthe B-cell population which is the source of antibody production andsuccessful immune response.Psychosocial impact of Alzheimer's disease Variables affecting psychosocial impact. Finally, Native American families also value relational networks.They may have extensive kinship networks that reach far beyond thereservation and call upon members of the family who have not been home inyears. In order to do that, it isnecessary to understand some of the factors related to the etiology of thedisease and use those as diagnostic tools. Asian-American families are even more diverse, but still share somecultural tendencies which support family-centered social support systemsand shared caregiving. Four categories were devised: (a) no help; (b)caregiver help only; (c) caregiver and informal help only; and, (d)caregiver and formal help (with or without informal help). As life expectancies continue to increase,Alzheimer's may continue to impact some percentage of the population, evenif it begins its course at a later and later age. NY:Sage. Finding meaning through caregiving: Development of an instrumentfor family caregivers of persons with Alzheimer's disease. What is required is a more compassionate, comprehensive approach tocaregiving for Alzheimer's patients (and Parkinson's patients, AIDSpatients, and all of those with chronic, degenerative conditions).Cognitive restructuring can only take a person so far. Although racial and ethnicminority families all bear the brunt of care for relatives withAlzheimer's, they may do so in a different way. American Indians - The first of this land. Thus, patients in the passive group deteriorated morequickly than those in the active involvement treatment group. Dilworth-Anderson, P. (1999) focused on dominant mutations as major factors inthe etiology of Alzheimer's disease. This actuallyleft out many people with Alzheimer's disease who did not need specificmedical or nursing services, but were clearly in need of long-term careservices. From a different perspective, caregiving can be viewed as part of thedevelopmental process of the caregiver, with more to do with how theindividual caregiver negotiates that situation than with management plansand health care systems. What seems lacking is a clear picture from both caregivers, anddementia patients, of the total trajectory of the disease from pre-diagnosis through diagnosis, early stages, middle stages, and end stages ofthe disease. Programs have been so designed thateligibility criteria for long-term care services were most often based onmedical criteria, including the presence of a specific disease or conditionor need for particular medical or skilled nursing treatment. Alzheimer's disease: What we know now.Nursing Homes, 47(6), 56-57. There is a strong valuing of the elders in native society, which isreinforced by an ethic of mutual support and assistance (Snipp, 1989). Theservice use patterns analyzed by Smyth and Milidonis (1999) came from theinitial interviews from the longitudinal study. Serafica (ed.). Corbeil, R.R., Quayhagen, M.P. The researchers only worked with 2 subjects from14 different countries. Measures werethen taken of caregiver normative beliefs and values about receiving helpand of caregiver experiences of the caregiving situation (Smyth andMilidonis, 1999). The Gerontologist, 3 , 583-594. Using neurophysiological methods can also be helpful. However, the author's noted that themeasures did not always agree with each other and provided some conflictingresults. These affect approximately 1 person per 1 . Finally, there is a similar reliance on God as with African Americanfamilies, although expressed in a somewhat different way. By the late, or severe stage, which generally lasts less thantwo years, the individual has totally lost the ability to walk or speak,cannot relate socially at all, has no self-care capacity, incontinence,indifference to food intake, and very little of living personality left.Death results primarily from pneumonia, complications from pressure sores,malnutrition, or dehydration (Callaway, 1998).Consequences In looking at the consequences of Alzheimer's disease for the patientand their caregiver, the issue becomes more complicated. There are great commonalities of experience among those whocare for people with Alzheimer's disease. MacRae, H. In F.C. They learned that both mental-status-test cutoffsand functional criteria actually leave out people with relatively severedementia and behavioral problems. There are also significant differences between people basedupon attitude or religious/spiritual/philosophical attributions andattitudes. Smyth, K.A. This allows for more spreading of the work involved and providescrucial support for the spouse or any main caregiver of the individualaffected by Alzheimer's Disease. (1999), Alzheimer's disease is the mostprevalent cause of dementia at the present time. (1999) explored dealwith one important subject impacting caregiver well-being. Second, fatigueclearly affects functionality or productivity. Arch. Serafica (199 ) noted that shameis used to reinforce behaviors that the culture sees as important. It is inadequate because it is impersonal. These mediating factors impacted theoutcomes for caregivers, including physical, psychological, and cognitiveproblems. It is estimated that the prevalence mayquadruple during that time (Brookmeyer et al., 1998). Nonetheless, my recommendation remains that researchers, health careproviders, and activists work together to think about a total health caresystem that would provide for wellness and prevention, but acknowledge thereality of illness and death. This is yet another way in which caregivers experience caregiving asstress or burden. Forexample, two loci on chromosome 12 were suggested, but evidence has beeninconclusive. Scholarly Inquiry for NursingPractice: An International Journal, 6, 111-113. Managing feelings: caregiving as emotion work.Research on Aging, 2 (1), 137-16 . For example, Schraeder et al. Aging and health: Hispanic Americanfamilies. The individualmay wander restlessly, get lost, become confused, and experience greatagitation. It seems likely that thispopulation is the one most affected emotionally, financially,psychologically, and otherwise by caring for patients with Alzheimer's. The hope is that the literature review will providesome ideas about how caregiving can be enhanced, providing effective carefor the patient and a manageable, meaningful role for the primarycaregiver(s).How much literature is available? This does not mean thatindividuals should be abandoned solely to their own resources, but thatlooking only to the community for service provision is an inadequateapproach. In looking simply at cognitive problems, these can include suchthings as disturbances in memory, loss of language, perceptual and judgmentproblems, the inability to problem solve, the loss of abstract thinking,and the inability to take in and process new information. A comprehensive supportprogram: Effect on depression in spouse caregivers of AD patients. They struggle with loss and grief asthe patient changes and regresses. Taylor, S.J. However, the second subscale emphasizedmeasuring provisional meaning, which means looking at how the caregiversfound meaning on a day-to-day basis in their lives, which were sometimesquite limited. At that point, thecaregiver is hurting their own health, which in the long-term may lead toinstitutionalization of the patient when the caregiver can no longerproceed to meet the patient's needs because of their own health problemsand fatigue (Teel et al., 1999). The measure that they developed has three separate subscales. MacRae (1998) explored this perspective in some detail by looking atcaregiving as work of a certain type. They also emphasized satisfaction gained from fulfillingtheir duty and doing their job well. Vega, W.A. On that basis, she determinedthat caregiving as emotional work was an important emergent theme, and thatcaregiving clearly qualifies as a different aspect of worklife that is partof the adult developmental process. (1999). Despite goodcoping skills, these are individual's who need more assistance from thecommunity than they are typically receiving. Additionally, they tested the effect of cognitivestimulation intervention. Itemphasizes working on quality of life issues for people with dementia, butit still basically is informed by the biomedical model and the concept ofdementia as a disability. These were mediated by whatever coping skills caregivers had,along with the support they received. The Gerontologist, 28(5), 677-685. The results that the researchers obtained were ambiguous. Theactive intervention also provided caregivers with techniques to help thepatients, presumably reducing their sense of powerlessness, which is alsorelated to depression. As with Hispanics, the family is given precedenceover the individual, and children are expected to be available to helpdependent elderly relatives. NY: Springer. Its concerns are social psychological adjustmentto the disability to patients and by caregivers. (1997). What is available to us in greater detail is research aboutthe physical and emotional symptoms of the patient as viewed from theoutside. It is possible that Alzheimer's disease cannot becompletely cured, in the sense of eliminating it completely from acontinually aging population. In particular, the caregivers reportedless life satisfaction and increased depression. For those unmarried persons with Alzheimer's, the most significantfactor seemed to be a high percentage of Medicaid long-term care spendingon home and community based services. However, it iscertainly possible for caregivers to assess the quality of their livesphenomenologically while dealing with patients with Alzheimer's disease. They feel asense of failure as caregivers, despite the fact that they might haveprovided good care to the individual patient. There were certain consistent themes in terms of bothdifficulties and satisfactions. Of that group, only 5 percent reportedtheir health as good, in contrast to 75 percent of othernoninstitutionalized elders who rated their health as good or excellent(Stone et al., 1987). Journal of Aging and Health, 11(1), 79-95.Dilworth-Anderson, P. Introduction to qualitativeresearch methods. However, probablecause of Alzheimer's disease depends upon the inclusion and exclusion ofspecific factors. Stanford, CA: Stanford Geriatric Education Center. Scientists need to overcome barriers to suchparticipation, and develop long-term partnerships with the community todevelop a pluralistic approach to the assessment of outcome. What is important about these studies is the recognition that doingfamily caregiving well may not mean that all families do family caregivingin the same way. (1999)seem overly focused on the contribution of positive reappraisal, when itseems as though the active intervention might be the more significantfactor. Haley, W.E., Roth, D.L., Coleton, M.I., Ford, G.R., West, C.A.C.,Collins, R.P. It interferes with theindividual's ability to perform tasks of daily living, and can become animportant problem in caregiving another person. For ruralsettings, case managers had to recognize that their clients were likely torespond negatively to formal, outside assistance, but could still be helpedto mobilize informal networks of support on their own behalf. Journal of the American Geriatrics Society, 4 ,221-224. (1996). Dementia caregiving inblacks: A contextual approach to research. Consequently, long-termcare professionals must keep up-to-date about medical knowledge and careprovision. Essentially, this approach has been described as discriminatoryagainst older people in the provision of health care. It may take a whole village to raise a child well, but itmay also take a whole community to care for a deteriorating elderly personwell. Farran, C.J., Miller, B.H., Kaufman, J.E., Donner, E., Fogg, L.(1999). Chronicstress associated with spousal caregiving of patients with Alzheimer'sdementia is associated with downregulation of B-lymphocyte GH mRNA. There are threeclinical stages: early or mild, middle or moderate, and late or severe(Callaway, 1998). Counseling Asian-american parents: Acultural developmental approach. Rev. Neurol., 155(4),S1 -S16. Serafica, E.C. Their study utilized 12 family dyads of caregivers and community-living persons with probable or possible Alzheimer's disease as diagnosedby NINCDS-ADRDA criteria. Instead ofattempting to avoid caregiving, adults may need to accept it as part of thefullness of their experience as adults. Yet, it is a vagueterm without general agreement about what comprises it, and what place itplays in making important decisions about life and death. Lazarus, R.S. and Quayhagen, M. It also seems potentially fruitful to use this approach withAlzheimer's patients themselves. There are also differences in the experience based on severalfactors. Callaway (1998) starts from the basic definition of dementia, whichrequires the individual to be suffering from the development of multiplecognitive impairments, which can be due to may different causes. Afterquestionnaires were received, caregivers were invited to participate in alongitudinal study of their use of services through the community. Caregiving demands: Their difficulty and effectson the well-being of elderly caregivers. The relationship betweennormative beliefs about help seeking and the experience of caregiving inAlzheimer's disease. How then does one even begin to assess the quality of life of any oneindividual involved in the situation? However, the best approach is to view the individual inhis or her life context and look at the totality of behaviors, personalitychanges, and cognitive difficulties. According to Sikanovski (1998), the current state of knowledge ofAlzheimer's disease helps in diagnosis, treatment, and caregiving. Patients may alternately want to liveas long as possible and die as soon as possible, depending upon theircurrent condition. Internet:(http://www.alz.org/Default.htm). The carerecipients themselves were almost equally divided between men and women,with 51 percent male and 49 percent female. (1998). What ismore reasonable is to develop more than one type of family assistance modelin order to respond to the different kinds of families that exist and needhelp. Thefirst actually looks at the more negative aspects of caregiving, measuringloss/powerlessness feelings. All caregiving groups reported similarlevels of fatigue, energy, sleep problems, and self-reported healthproblems, even though there were differences in the status of theirspouses' health. The passivetreatment group allowed the caregivers to model activities, but did nothave caregivers actively involved in working with the patients (Corbeil etal., 1999). Medical professionals are biasedtoward extending life as long as possible, and tend to be optimistic abouttreatment possibilities. However, in most instances, families are willing toallow for some level of informal help from relatives and friends. (1999). Patientdeterioration was associated with increased stress in the caregiver for allpatient groups, although the effects of stress were ameliorated to someextent in the active treatment group. and Bogdan, R. (1999) devised a study to explore the experience of co-resident caregivers in a cross-national study termed EUROCARE. The same may apply with caregivers judging thepatients' quality of life. There are anumber of dimensions to Alzheimer's, and there are both cognitive andnoncognitive symptoms. NY: Praeger. Following that were physical health, supportvariables, behavioral problems, income, and finally intervention ofcounseling and psychoeducation. These include such thingsas behavioral changes, personality changes, loss of control, great angerand violence, inappropriate sexual behavior, inappropriate social behavior,wandering, restlessness, agitation, and distress. This, then, was associated withincreased levels of caregiver depression and decreased life satisfaction. They experience many of the samestresses, burdens, and difficulties. (1998). Miller, S.C., Prohaska, T.R., furner, S.E and Freels, S. and Larson, E.B. They may nothave respite care available to them in the community, or that respite caremay be as little as two hours a week, or it may cost them money that theydo not have available. These spouses were individuals from 14 of the 15 separate countries of theEuropean Union. (1999).Fatigue among elders in caregiving and noncaregiving roles. (1999) noted that one of the reasons there has beenlimited focus on the positive aspects of caregiving is that there has beena lack of comprehensive, theory-based and valid tools to measure elementsof caregiving. (1998).Time to nursing home admission for persons with Alzheimer's disease: Theeffect of health care system characteristics. Early diagnosis of Alzheimerdementia based on clinical and biological factors. For example,they tend to be quite family-centered, with the family at the center oftheir social universe and social support system. It seems that sometimes theassumption is made that there is only one type of caregiving system, butthere are variations based on ethnicity. Impact on spouse caregivers. There is also a great deal of literature available about theimpact of caregiving a patient with Alzheimer's or other dementia. Another country. The causal variables of person and environment mediate the processof stress appraisal and the use of coping techniques and social support.These, then, affect adaptation, both short- and long-term (Corbeil et al.,1999). Fox (1999) argued that all the criteria need to be taken into accountfor the Alzheimer's patient. Finally, the third subscale explored ultimate meaning,which identified fundamentally religious or philosophical thinking aboutthe individual's experience of caregiving. The Journals of Gerontology,53B(6), S341-S353. Itis not exactly an individualistic perspective, but it points out that theindividual adult needs to grow in certain ways, some of which involvecaring for aging parents and other family members. The studywas quite limited, since it was a qualitatively devised to gain in-depthinformation from caregivers in several different countries about thedifficulties and satisfactions of their experience. They used up to nine years of datafrom the Consortium to establish a Registry for Alzheimer's Disease (CERAD)data covering 639 non-Latino white individuals and merged that data withlongitudinal data from the 28 states in which the CERAD participants lived. What would be helpful is for communities to come together to deviseprograms for caregiving in the same way that communities work together todevise programs for substance abuse prevention among adolescents or forwell-child programs for infants and toddlers. This is a chronic, progressive conditionwhich proceeds through several phases, each characterized by increasedcognitive dysfunction and decreased social functioning. Finally, non-genetic factors dealing with vascular andendocrine risk factors seem to be important in the pathogenesis of thedisease.Symptoms While most people have a picture in their minds of the typicalAlzheimer's patient, that picture probably does not include many of thesymptoms that can characterize an individual with Alzheimer's. They started with 87 caregiver/patient dyadsplaced in one of three conditions: (a) active cognitive stimulation, (b)passive stimulation, or (c) control. Some practical helpand support from the community would probably do more to alleviate stressand reduce caregiver depression, fatigue, and misery. EUROCARE:A cross-national study of co-resident spouse carers for people withAlzheimer's disease: II - A qualitative analysis of the experience ofcaregiving. MacRae worked from interviews with family caregivers of persons withAlzheimer's disease. This enables bothgroups to place a spiritual interpretation on life situations which givesthem more meaning (Villa et al., 1993). Stress, appraisal and coping. There are differences in thedevelopment of the disease in each patient, and there are differences inthe situation of caregivers. In terms of difficulties, caregiverstalked about loss of companionship, diminished quality of communication,loss of reciprocity and mutuality in the relationship, growing dependencyof the partner, and growing deterioration in the patient's social behavior. 4. (199 ).Caregiving and the stress process: An overview of concepts and theirmeasures. International Journal of Geriatric Psychiatry, 14(8), 662-667. (1999) study, although without an intervention. There are Alzheimer's patients who areotherwise quite healthy, and may live a number of years, although withsevere cognitive and behavioral impairments. (1993).Alzheimer's disease case management in a rural setting. Recognizing symptoms in residents of long-term care facilitiesmeans that these individuals have a better chance of slowing the course ofthe disease and benefiting from new treatments. Bond (1998) makes the radical assertion that in a democratic society,the people most involved in dealing with Alzheimer's - patients and theirinformal caregivers - are the people who should be most directly involvedin developing usable outcome measures relevant to their needs andcircumstances. Yet, it does not seem sufficient tomake overarching conclusions about the universality of the experience ofcaregiving for a spouse with Alzheimer's. Mental health ofethnic minorities. Their study emphasized the design and testing of a measurewhich was primarily focused on discovering the positive aspects ofcaregiving and the way in which caregivers create meaning from theirexperience. Data on caregivers' normative beliefs and caregivingexperiences were obtained through self-administered questionnaires. Another advantage to Hispanic families, at least in the earliergenerations in this country, is that they tend to be so rooted in family associal system that they live in closer proximity than their European-American peers. (1999) explored the use of a stress adaptationframework to help caregivers and patients cope more effectively withAlzheimer's disease. Thescope of the project is a literature review of the literature onAlzheimer's disease and caregiving, including U.S. In looking at the course of the disease, this varies widely. She analyzedthe data using the procedures outlined by Taylor and Bogdan (1984) foremergent themes leading to new hypotheses. The finalmodel, which is often deemed optimal, would provide the family with thefull range of services, including core family, relatives, friends, andformal agencies. This was directly correlated to lengthof time before nursing home admission. There is, for example, the biomedical model,which assumes that science and technology will automatically improve humanlife and that extending human life through modern medicine is beneficial. This seems to be what Pipher (1998) is implying.There is usually more than one chance for adult children to rise to theoccasion with their aging family members. This is a meaning-oriented model, which means thatdementia is viewed contextually as part of a total life trajectory. (199 ). The intention is to explorecaregiver burdens, the psychosocial impact of Alzheimer's, copingstrategies, and how to do family caregiving well. In their intervention study, Mittelman et al. PsychiatryClin. The authors emphasized that the United States does not have a uniformnational program providing for funding for long-term care services, butthat there is a mishmash of federal and state programs which are involved.The upshot is that many people fall through the cracks and do not receivethe community support that they need. After this,the focus is on one type of care option, long-term caregiving in the home(although this might eventually result in placement in a nursing hometoward the end of the person's life). Culture and family caregiving. Ambinder,A., Mackell, J.A., and Cohen, J.V. Another problem area thatcan be measured is hypometabolism in bilateral parietotemporal brain areas. Snipp, C.M. Besides cultural differences, there are differences inbelief systems that serve as the foundation for the way the family hasconducted its entire existence. Sikanovski (1998) noted that by the middle of the next century 14million Americans will suffer from Alzheimer's. Kitwood, T. Stepwise comparative status analysis: A tool for identification of regional brain syndromes in dementia.Journal of Geriatric Psychiatry and Neurology, 9(4), 185-199. (1996) looked at both white and black family caregiversof patients with dementia, using variables similar to that in the Corbeilet al. Pipher, M. These families might needassistance in developing family cohesion and a family plan to addresscaregiving needs. It helps if people are able to make meaning of their experienceon a daily basis and also in terms of some ultimate meaning (Farran et al.,1999). In addition, the coping strategy ofpositive reappraisal had much more of an effect in the active treatmentgroup than the passive group or control group. and Isobe, T.L. Those with Alzheimer's wereevaluated through a thorough in-person examination conducted by aneurologist. In a study related to this, Pearlin et al. The focus ison the caregiver and the impacts of Alzheimer's disease on family members,particularly spouses. Bothtacrine and donepezil have been approved by the FDA, and estrogen treatmenthas been indicated to protect women and slow the onset of the disease.Other possible treatments include antioxidants, nonsteroidal anti-inflammatory drugs, and gingko (Sihanovski, 1998). Subcultural differences in the United States based on race andethnicity create different types of caregiver systems than among themainstream white population. These coping techniques had an important influence on caregiver levels ofdepression. (1998). Theresearchers also note that clearly other genes are involved in the etiologyof Alzheimer's, but these have not yet been clearly identified. (199 ). She indicated that a symbolic interactionistperspective suggests that individual's who feel like they have failed infeeling management or development are negatively impacted. Three of these should be emphasized: 1. Clearly, if they are attempting to live up to a set ofperceived rules, but cannot do so, they are increasing their burden ofstress and suffering. Dementia reconsidered: the person comes first.Buckingham: Open University Press. and Milidonis, M.K. Hispanic families, although perhaps more diverse culturally thanAfrican American families, and with more subgroupings, share some valuesand beliefs that alter their experience of caregiving, too. Even now, prevalencerates for the population over the age of 85 is between 25 percent and 48percent (Larson et al., 1992). In E. Theindividual with Alzheimer's disease may live anywhere from three to 2 years after onset of the disease, although the average course of thedisease is eight to ten years. She used a qualitative methodology with a socialpsychological focus that analyzed material gained from the interviews froma symbolic interactionist perspective. (1992). For example,using the MRI, measurements of brain atrophy and the hippocampus may helpidentify dementia development at an early stage. (1984). Somegenes and some proteins have been implicated, along with non-geneticfactors, but the most direct correlation is between the age of theindividual and the Alzheimer's prevalence rate. Murray, J., Schneider, J., Banerjee, S., Mann, A. (1999). Here is an instance in which cognitive restructuringmay be helpful. It seems as if the answer is that no one canmake that judgment with complete purity. Welch, H.G., Walsh, J.S. Judgments of quality of life are generally made from theseobservations by proxies, either family caregivers or long-term facilitycaregivers, or researchers and scientists. One group comprised caregivers forspouses with Alzheimer's disease, Parkison's disease, or cancer, while thecontrol group of older adults had spouses who required no extra care. It is notautomatically a meaningless or totally gruesome experience for theindividual, despite the difficult nature of the disease and itsconsequences. This directly correlated with alonger time before the person was admitted to a nursing home. The beliefs and attitudes that Farran et al. TheGerontologist, 35, 792-8 2. The caregiving group comprised 92 subjects, with the control groupincluding 33 older adults. Ingeneral, greater behavioral impairment or deterioration was associated withhigher appraisal of stress by the caregiver and increased use of approach-type coping with less social support. The chapter ends with asummary of the literature review.Causes of Alzheimer's Disease Almkvist and Winblad (1999) note that with symptomatic treatmentscurrently available, it becomes more and more important to diagnoseAlzheimer's disease as early as possible. Social workers focus on the emotional andpsychological needs of the families. Intheir study, Fox et al. Thus, the burden is extended throughout the network, as arethe satisfactions. Mittelman, M.S., Ferris, S.H., Shulman, E., Steinberg, G. For example, it would be expected that there would be multiplecaregivers for the patient with Alzheimer's. The caregiver clearlyhas some interest in relieving himself or herself of the burden of theindividual with Alzheimer's. Wallin, A., Edman, A., Blennow, K., Gottfries, C.G., Karlsson, I.,Regland, B. Clearly, though, family fighting or lackof solid family support was an important contributor to caregiverdepression. This leads to a highincidence of sickness among caregivers, with particular susceptibility toinfluenza, which has been reported previously in the literature. The treatment program was designed to alleviate the depressionof the caregivers over time. As Bond indicated, what domains aremost important, how do we rank high and low quality of life within eachdomain, and, most important, who makes those decisions. This isfollowed by a short discussion of some of the care options for patientswith Alzheimer's and the associated financial considerations. However, there are some other potentialrisk factors that might identify at-risk individuals who could be monitoredfor early onset of symptoms. Inaddition, spouses are most frequently caregivers and many of them are olderadults themselves. Sikanovski, D. The Gerontologist, 27(5), 616-626. Certainly age is a primary factor. NY: Schraeder, C., Shelton, P., Dworak, D, and Fraser, C. The majoritywere female, at 67 percent, and white, at 91 percent, with a mean age of 67years. Besides having a greater network of support, African Americanfamilies may have core values and belief systems which enable them toexperience the situation as more meaningful or more acceptable. (1998). (1996). and Skaff, M.M. Neuroscience, 249(3), 3-9. Even long-term care professionals are finding out more about how toameliorate the progress of the disease and provide treatments for those whosuffer. Long-term careeligibility criteria for people with Alzheimer's disease. Bond, J. For example, in theAfrican American community there is often more of an extended family-centered culture which creates relational networks of caregivers includingboth blood relatives and nonkin, including friends (Dilworth-Anderson,1994). The first stage of the disease generally proceeds from onset to fouryears. The problem with this study, however, was the limited number ofsubjects considered and a problem of subtle, or unconscious bias on thepart of the researchers. However, eligibility for financial support for long-term care isanother issue that impacts caregiving and choices about caregiving. There are a number of factors that influence the individual'sdecision about continuing home care of a patient or placing that individualin another facility, such as an assisted-living center or nursing home. (1998). There wassome clear relationship between the caregivers' beliefs and theirexperience of caregiving, particularly their perception of the severity ofthe individual's Alzheimer's disease. (1999) applied eligibility criteria to a sample of8,437 people with dementia who were enrolled in the Medicare Alzheimer'sDisease Demonstration. They can includepsychological problems, such as anxiety, depression, and psychoticbehaviors.Progression Interestingly enough, a definitive diagnosis of Alzheimer's cannot bemade until after death, because it requires a neuropathological examinationthrough brain biopsy or autopsy (Wallin et al., 1996). Journal of Consulting and Clinical Psychology, 64, 121-129. First, they impact the health of the individual caregiver andtheir degree of quality of life or life satisfaction. In all of these models, however, Bond (1999) noted that quality oflife seems to be an important matter for discussion. These new treatments include both drug and behavioral treatments,which all can be used by family caregivers or long-term care facilities.The drug treatments are all still basically experimental, but aim toenhance nerve cell communication, regulate defective processes, protectnerve cells from damage, or repair damaged nerve cells in the brain. She indicated that new diagnostic tools have been developedthat have made diagnosis of Alzheimer's much more accurate, up to 85-9 percent. He indicatedthat there is little agreement about the domains of quality of life, thestandards for each domain, and who determines the importance of each domainfor each individual person. This latter seems the most democratic approach to thinking aboutAlzheimer's disease, yet it, too, has its drawbacks. (1984). Journal of CaseManagement, 2(1), 26-31. Journal ofClinical Psychology, 55(9), 11 7-1125. Their work clearly was based on work stemming from the earlieststress adaptation frameworks, like those developed by Lazarus and Folkman(1984), in which stress response is viewed as an interaction between theenvironment and the person's interpretation of events in the environment.The cause of stress is not entirely the event, but includes personvariables, such as values, goals, and beliefs (as with Dilworth-Anderson,1999). In the positive stimulation treatment group, caregivers were trainedto work actively with the patients, providing them with stimulation throughmemory training and acquisition of conversational skills. Villa, M. Thespiritual aspects of Native American life diverge widely from each other,but certainly spirit guides and rituals are important to Native Americanlife and provide a meaning context for illness and for caregiving theelderly. However, these effectswere mediated by other factors, including social support systems and copingstrategies. Besides age, other risk factors, include geneticinheritance, and possibly previous head trauma, levels of education,cardiovascular disease, and other socioeconomic factors. (1994). Besides family history, the ApoE e4 allelehas been configured as a risk factor. Geneticand environmental factors in Alzheimer's disease. Fox, P., Maslow, K., and Zhang, X. References Almkvist, O. Thus, they are more able to share in caregiving for boththe older and younger members of the family (Vega, 199 ). At this point, the individual generally experiences short-termmemory loss, disorientation, mild personality change, and impairedjudgment, problem-solving ability, and information processing. (1999). MacRae (1998) noted that her subjects were aware that they wereinvolved in heavy emotional work, that they were aware of specific rulesabout feelings and managing feelings, and that they experience considerablestress when they perceive that they have failed to perform their feelingtasks appropriately. There is just not the same appeal to it, because people do not wantto deal with their own mortality, and prefer to think that other people'sproblems will not happen to them. (1987). Nonetheless, the ultimate situation is that many elderly peopleare in situations under great stress caring for spouses who are indeteriorating health and who have severe behavioral problems. However, they oftenstill derive satisfaction from companionship, mutual affection, and thefulfillment of their obligations. (1999). NY: John Wiley. Ultimately, Corbeil et al.(1999) found results similar to those reported by Haley et al. Tol et al. and Sjogren, M. A gene may have multiple alleles which are expressed in differentphenotypes, or variations, as in protein composition or enzyme production.In this instance, e4 is the allelic variant of the gene for ApoE and it isassociated with lower levels of cognitive performance in non-dementedelderly adults.) Low education levels, hypertension, and hypotension havebeen associated with Alzheimer's using epidemiological research. That did not seem tobe a significant factor. This may involve other family members of friends, butgenerally is the primary responsibility of the spouse of the patient or anadult child. A high percentage of the caregivers forpatients with Alzheimer's disease are spouses. It has also developeda document called Key Elements of Dementia Care which provides parametersfor dementia care and treatment throughout the range of residential caresettings (Welcome to the Alzheimer's Association, 1999). (199 ) looked at thedementia-diagnosed individual's behavioral problems and disruptions as theprimary stressors in the situation, but problems within the family,including conflict and lack of cohesion as secondary stressors inthemselves. This system would have structures andprograms in place to address all of the components, ages, and stages of theperson's life, and would truly look at health care as community health orpublic health, rather than an individual matter.At the same time, Mary Pipher's (1998) perspective is an important one. Finally, another important approach to measuring qualityof life is the phenomenological approach. In general, Bondcriticizes standard research because it focuses simply on comparingmeasures of health status, and is not particularly oriented to the meaningdimensions, or social dimensions, of the disease and its human context. Theindividual cannot continue with a job, cannot normally engage in socialrelationships adequately, and cannot perform activities of daily livingwithout great difficulty. Most individuals with Alzheimer's eventually wind up in a long-term-care facility, such as a nursing home. They are lessindividualistic than European-Americans, as a rule, with more of a sense ofthe family preceding the individual. It can assist health care professionals, counselors,social workers, and others assist caregivers and patients in learning howto live with Alzheimer's.Scope or Delimitation of the Study This study is limited, because it is not an experimental design. and Glaser, R.
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