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Alzheimer's Disease:
A Family Affair and a Growing Social Problem

(Released April 2001)

  by Sandra S. Stanton  


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Key Citations Short Format Full Format

    Braun, Kathry L [Ed]; Pietsch, James H [Ed]; Blanchette, Patricia L [Ed]

    xii+356pp, SI&AI, Thousand Oaks, CA: Sage, 2000

    The goal of this volume is to prepare health care workers to guide patients & their families in making crucial end-of-life decisions. The greater life expectancy enjoyed by Americans means death is now usually preceded by years of worsening disability that requires changes in services to the dying. The medical, legal, & ethical context of the dying experience is discussed, along with religious issues, differing ethnic perspectives, & the importance of supportive activities/rituals. Case histories are presented to demonstrate perspectives on death/dying from within two institutional cultures (hospital/nursing home & the US military), as well as two different population groups (individuals with HIV /AIDS & those with disabilities). The increasing diversity of the US population underlines the need for a better understanding of how behavior is shaped by culture, including the behaviors of physicians/health care workers. In addition, technological advances like organ donation & mechanical ventilation have introduced end-of-life issues not addressed by traditional religious or legal documents. Needed changes in current advance directives, such as living will declarations, are discussed, & suggestions are made for ways practitioners can become better able to meet the social, emotional, & spiritual needs of dying patients & their families by understanding how personal experiences have shaped their values, beliefs, & attitudes. The book contains an Introduction & 19 Chpts organized in IV PARTS. 12 Tables, 1 Figure, 648 References. J. Lindroth.

  2. Balancing Family Life: How Adult Children Link Elder-Care Responsibility to Service Utilization

    Piercy, Kathleen W; Blieszner, Rosemary

    Journal of Applied Gerontology, 1999, 18, 4, Dec, 440-459.

    To examine links among adult children's perceived responsibility to care for elderly family members, other family needs, & their use of formal services, caregivers in 15 families in the southeastern US providing assistance to a parent or parent-in-law were interviewed about their responsibilities to their relatives & their reasons for using or not using community services to help with caregiving. Results indicated that perceived responsibility included responsibility both to the parent & to other family members. Reasons for using services included both care recipient considerations as well as caregivers' personal & marital concerns. Respondents' families sought assistance from formal services to balance parental safety needs with caregiver needs for personal & marital fulfillment. When caregivers experienced physical or emotional limitations, they hired help. Implications for practitioners providing services to caregiving families are discussed. 3 Tables, 24 References. Adapted from the source document.

  3. Advance Elder Care Decision Making: A Model of Family Planning

    Cochran, Donna L

    Journal of Gerontological Social Work, 1999, 32, 2, 53-64.

    Presents an advance directive elder care planning model for social workers, the Advance Elder Care Family Planning model (AECFP), that aims to reduce family conflict by collectively empowering individuals through information & dialogue. The role of older adults in advance care decisions & the impact of elder care on families are discussed. 30 References. Adapted from the source document.


    Rogers, Richard G; Hummer, Robert A; Nam, Charles B

    xx+354pp, SI&AI, San Diego, CA: Academic, 2000

    Examines socioeconomic & behavioral factors related to mortality by comparing data on adults who responded to the annual US National Health Interview Survey in 1986-1994 with matching death certificates in the Multiple Cause of Death file. The many variables, including gender, education, ethnicity, occupational status, smoking/drinking, mental health, religious affiliation, & health insurance, reveal links between earlier lifestyle patterns & death in old age by specific medical causes. The sample size of approximately 120,000 people, representing 40,000+ households, allows for detailed ethnic/racial analyses that offer results not found elsewhere: eg, foreign-born African Americans have the lowest mortality of any ethnic group. National Health Interview Survey data/methods are described, along with how that data set was used, noting that most outcomes were generated through regression models of mortality risk that took into account different sets of covariates as explanatory variables. Although factors like sex, smoking, & exercise consistently show strong associations with mortality, variance in the effects of other variables indicates their impact on mortality is moderated by other factors. Low mortality rates among those with high socioeconomic status are related to access to private health insurance/health-promoting activities & demonstrate that death is an indicator of social inequality. Policy implications are discussed. The book contains an Introduction & 17 Chpts organized in IV PARTS. 81 Tables, 16 Figures, 1 Illustration, 357 References. J. Lindroth.

  5. 'User Pays' and Other Approaches to the Funding of Long-Term Care for Older People in Australia

    Fine, Michael; Chalmers, Jenny

    Ageing and Society, 2000, 20, 1, Jan, 5-32.

    It has been argued that without some system in which future generations of users are able to pay for their care, the cost of services for an increasingly large group of older people will be borne by a declining base of economically active younger people. Is the answer a user pays approach to the financing of aged care, as promoted by recent changes to aged care financing? Reviewed here are this concept & its recent history in Australia. On the basis of a brief review of alternative funding systems, also evaluated is the potential of public & private insurance schemes to increase funding by potential service users & underwrite the long-term viability of funding for aged care services. 4 Tables, 56 References. Adapted from the source document.

  6. Aging Children and Their Older Parents: The Coming Generation of Caregiving

    Laditka, James N; Laditka, Sarah B

    Journal of Women & Aging, 2000, 12, 1-2, 189-204.

    This study uses a data set of older children & their older parents to examine caregiving relationships. Using the 1993 Panel Study of Income Dynamics & the 1993 Health Care Burden file, we examine help given by children to their parents. We distinguish between daughters who are household heads & daughters who are wives. We find parents receive substantially more care from daughters than from sons. The caregiving role of daughters who are household heads differs notably from that of wives. An analysis of caregiving, employment, & housework shows that children who are caregivers devote more combined hours to these activities than children who do not provide care. 4 Tables, 32 References. Adapted from the source document.

  7. Age-Related Variation in Roles Performed by Hospice Volunteers

    Black, Beverly; Kovacs, Pamela J

    Journal of Applied Gerontology, 1999, 18, 4, Dec, 479-497.

    Interview data from 222 volunteers in hospice programs in southern FL show that those of varying age groups display much similarity in their motivations for volunteering, how they learned about the opportunity to serve, satisfaction experienced from serving, & various measures of retention. However, volunteers' ages significantly influenced the roles they performed at the hospice. Significantly more younger volunteers provide direct patient care services; & significantly more older volunteers provide clerical & fund-raising services. Implications for future research & recruitment & retention of hospice volunteers are discussed. 5 Tables, 57 References. Adapted from the source document.

  8. The Family Role in the Context of Long-Term Care

    Montgomery, Rhonda J V

    Journal of Aging and Health, 1999, 11, 3, Aug, 383-416.

    Current long-term care policy & practices are built on the premise that the family is & should be the primary party responsible for impaired older persons. Presented here is evidence that this premise & the resulting policies & practices are (1) built on myth; (2) fueled by gender, income, & ethnic inequalities; & (3) largely responsible for the creation of a service system that has inadequate capacity to meet current & future needs. An alternate paradigm, which places primary responsibility for long-term care needs on the individual, is proposed, & implications for new policy direction are outlined. The projected benefits of this shift in paradigm will be the development of a more viable & equitable long-term care system that has the capacity to provide high-quality care to meet the expanding need. 116 References. Adapted from the source document.

  9. Improving Public Financing for Long-Term Care: The Political Challenge

    Feder, Judith

    Journal of Aging & Social Policy, 1999, 10, 3, 1-6.

    Outlines the need for social insurance programs for the elderly & calls for a wider focus & change in public perception. Common barriers that prevent a more forward-thinking plan from being developed are identified. The community that values expanded public long-term care protection is divided, & to overcome deep-seated political skepticism about long-term care, a significant constituency must be mobilized. Focus should be shifted from limiting federal liabilities & cutting benefits to generating the revenues to sustain & improve affordable insurance protection. Health insurance like Medicare is necessary but not sufficient; a more comprehensive & preventive social insurance plan is needed. T. Hunt.

  10. Burden Felt by Family Caring for the Elderly Members Needing Care in Southern Japan

    Arai, Yumiko; Washio, M

    Aging & Mental Health, 1999, 3, 2, May, 158-164.

    Reports an attempt to cross-validate the Japanese version of the Zarit Caregiver Burden Interview (Zarit, S. H., & Zarit, J. M., 1990) in an investigation of significant correlates of heavy caregiver burden among 45 pairs of caregivers & elderly in need of care who received regular nurse visits from a clinic in Onga County, southern Japan. Results showed high internal consistency. A logistic regression analysis revealed the following: (1) Those who looked after elderly with more than two behavioral disturbances were more likely to feel greater caregiver burden. (2) Those who looked after elderly who were totally dependent in terms of activities of daily living felt less caregiver burden than those looking after only partially limited elderly. 4 Tables, 36 References. Adapted from the source document.

  11. Aggressive Behavior, Staff Attitude and Staff Perception of Patients on Two Continuing Care Psychogeriatric Wards

    Bahareethan, M; Shah, Ajit

    Aging & Mental Health, 2000, 4, 1, Feb, 66-71.

    Various staffing factors, potentially amenable to improvement by training, are thought to be associated with levels of aggressive behavior on continuing care psychogeriatric wards. The relationship between aggressive behavior in patients, measured by the Rating Scale for Aggressive Behaviour in the Elderly (RAGE), & the nursing staff's perceptions of & attitudes toward the patient, measured by the Modified Alienation Scale (MAS), was examined in a prospective study over 4 months on two continuing care psychogeriatric wards in a London (England) teaching hospital. There was a moderately strong correlation between the RAGE total score & the MAS total score & its subscales of feeling distant from the patient, deliberate use of symptoms by the patients, alienation of the patient, & variable mood in the patient. Intervention studies designed to either directly reduce aggressive behavior or to do so by improving staff attitude & perception, or both, in a range of settings, are suggested to identify clinically effective & cost-effective strategies. 1 Table, 1 Appendix, 54 References. Adapted from the source document.

  12. Elder Abuse, Neglect, and Exploitation: Risk Factors and Prevention Strategies

    Choi, Namkee G; Mayer, James

    Journal of Gerontological Social Work, 2000, 33, 2, 5-25.

    Data from 370 case files at a county adult protective services unit in Erie County, NY, are used to discuss the complex nature of domestic elder maltreatment, identify risk factors for different types of maltreatment, & recommend prevention strategies for both self-neglecting elders & those abused &/or neglected by others. Of the latter, risk factors for physical & emotional/psychological abuse &/or neglect are compared with risk factors for financial exploitation only. The risk factors analyzed include elders' gender, age, living arrangement, acute or chronic health conditions, mental health status, cognitive deficits, size of social support, & alcohol abuse. Discussed as preventive strategies are case-management services, caregiver support services, & alcohol/substance abuse screening & treatment. 4 Tables, 32 References. Adapted from the source document.

  13. Dementia in a Socio-Cultural Context: An Idea Whose Time Has Come

    Downs, Murna

    Ageing and Society, 2000, 20, 3, May, 369-375.

    An examination of the interest in the sociocultural context of dementia with reference to aging studies & disability research in contrast to the majority of work based on biomedical & psychological models. A shift in perspectives that dementia is caused by disease, rather than the aging process, is noted. Following F. A. Huppert et al (1994), it is argued that aging & dementia follow a continuum, with a lack of universal meaning of dementia. These differences are accentuated between Western & non-Western cultures, as well as across gender, class, & ethnicity. Further, there are different perspectives of care in different cultural contexts, especially regarding the burden of care. A call is made for more comparative research of different perspectives of dementia in both inter- & intracultural contexts, using qualitative, quantitative, & longitudinal methods. 40 References. T. Noland.

  14. No Aging in India: Alzheimer's, the Bad Family, and Other Modern Things

    Pigg, Stacy Leigh (Review of: Cohen, Lawrence)

    La Revue Canadienne de Sociologie et d'Anthropologie/The Canadian Review of Sociology and Anthropology, 2000, 37, 1, Feb, 111-112.

  15. Concluding Narratives of a Career with Dementia: Accounts of Iris Murdoch at Her Death

    McColgan, Gillian; Valentine, James; Downs, Murna

    Ageing and Society, 2000, 20, 1, Jan, 97-109.

    Obituaries & other accounts of well-known people at their death offer a narrative defining identity through the life story. Presented here is a case study, drawn from published newspaper accounts, where the dementia of a famous author (Iris Murdoch) figures in the tributes at her death. While Murdoch may not have wanted tributes to tell her story, they allow examination of conventional narratives of a person with dementia, charting the illness "career" & the perceived transformation of identity, defined in terms of "being demented" rather than "with dementia." Bad & good are attributed to aspects of Murdoch's life through a repertoire of available stereotypes. These appear to involve the retrospective application of characteristics of dementia, along with those of goodness & purity. Common gender representations relating to Murdoch's married life & the caring situation are interwoven in the accounts. The story reflects & reproduces conventional narratives of the life course & of dementia, characterizing the deceased in terms of a moral career. 1 Table, 31 References. Adapted from the source document.

  16. Grammar and the Brain

    Sabat, Steven R; Harre, Rom


    The cognitive skills possessed by individuals suffering from Alzheimer's Condition (the latter used in lieu of "disease") are studied, suggesting that the cognitive skills of people with Alzheimer's Condition can be evaluated by measuring their use of first-person pronouns, because use of such pronouns illustrates an individual's understanding of one's selfhood. An overview of the extent of brain damage experienced by people with Alzheimer's Condition & the functions of the prefrontal cortex region is presented. Two case studies of people with Alzheimer's Condition illustrate how an individual's sense of selfhood remains intact despite brain function deterioration. Analysis reveals a connection between self-reference & the cerebral cortex's functional ability. It is concluded that some aspects of intentional thinking are located in regions of the brain not affected by the onset of Alzheimer's Condition. 17 References. J. W. Parker.

  17. Decision-Making within the Social Course of Dementia: Accounts by Chinese-American Caregivers

    Hicks, Madelyn Hsiao-Rei

    Culture, Medicine and Psychiatry, 1999, 23, 4, Dec, 415-452.

    Reports a retrospective pilot study that sought to provide a naturalistic description of the decision-making process regarding dementia, a chronic illness. Qualitative interview data from 7 Chinese American families in the Boston (MA) area who were caring for an elderly family member with dementia were supplemented by interviews with medical professionals & ethnography done in the community. Findings led to the proposal of a more comprehensive, dynamic model for the social process of decision making in clinical & life situations of chronic illness. The model describes (1) the decisionmaker constellation, including multiple family members, professionals, & service systems; (2) relationships between decisionmakers as "allies" or "competitors"; (3) variations in the nature of the decision-making process; & (4) the interaction of decision making with larger social, economic, & cultural forces. Decision making in the case of dementia is placed within the conceptual framework of the social course of chronic illness. 4 Tables, 1 Figure, 84 References. Adapted from the source document.

  18. Locations of Remorse and Homelands of Resilience: Notes on Grief and Sense of Loss of Place of Latino and Irish-American Caregivers of Demented Elders

    Ortiz, Ana; Simmons, Janie; Hinton, W Ladson

    Culture, Medicine and Psychiatry, 1999, 23, 4, Dec, 477-500.

    Based on qualitative research with 10 Latino & 10 Irish American caregivers of demented elders in Boston, MA, it is argued that spatially & culturally constituted definitions of personhood, the moral life, & justice shape perceptions of normative aging; the agency of the demented persons & their place in the community; the appropriate care of the aged & demented; &, in part, the concrete resources available to elders & their families. Focus is on how ties to homelands & neighborhood institutions act as mediators & shapers of anticipatory grief, caregiver burdens, & caregiver resources, serving as a buffer against exhaustion & despair for some families (primarily the Irish American sample) & as an additional site of loss or stress for others (primarily the Latino sample). 30 References. Adapted from the source document.

  19. Caring in Families: What Motivates Wives, Daughters, and Daughters-in-Law to Provide Dementia Care?

    Cahill, Suzanne M

    Journal of Family Studies, 1999, 5, 2, Oct, 235-247.

    Explores the diverse reasons why 39 women in Brisbane, Australia, adopt dementia care roles & the extent to which a choice is available to them, drawing on in-depth interview data. Emerging differences between wives, daughters, & daughters-in-law regarding motivation to care are discussed. It is concluded that practitioners working in the field of aged care need to be mindful of the processes involved in decisions to care & of the extent to which informal care may be provided either willingly or reluctantly. 3 Tables, 41 References. Adapted from the source document.

  20. "Our Own Little Language": Naming and the Social Construction of Alzheimer's Disease

    Vittoria, Anne K

    Symbolic Interaction, 1999, 22, 4, 361-384.

    Specialized care environments designed to meet the needs of what some would argue is a dramatically increasing population worldwide, those with Alzheimer's disease, have been dominated by a medical model of care where treatment of disease has primacy over person. In contrast to the medical model, the Certified Nursing Assistants (CNAS) at an Alzheimer's unit have socially constructed an alternative to the medical model of care through, it is argued, the use of language & a process of "naming & reframing." In this "different world," as the CNAs call the world of the unit, the resident is depicted as a socially responsive actor with a surviving self that is to be treated with respect. Using a symbolic interactionist framework, the CNAs' construction & use of a "language of openings" - ie, the language arising out of the lifeworld of the residents - as the counterpoint to the "language of limits" of the medical model is examined, based on data from participant observation, interviews with 27 Alzheimer's residents & 14 staff members, & content analysis. Spoken everywhere, but nowhere inscribed as "official" knowledge, this "little language," as the CNAs speak of it, is the fundamental medium for social interaction in the Alzheimer's unit. 56 References. Adapted from the source document.

  21. Ethnic Minority Perspectives on Dementia, Family Caregiving, and Interventions

    Dilworth-Anderson, Peggye; Gibson, Brent E

    Generations, 1999, 23, 3, fall, 40-45.

    Stresses the importance of considering sociocultural factors when looking at dementia, including how cultural values & beliefs provide an experiential framework for such illness. Prevalence studies of dementia among racial/ethnic groups are reviewed. How culture impacts family caregiving of ethnic minority dementia sufferers is explored, & implications of cultural values for developing interventions are addressed. Future research directions are discussed. 1 Table, 42 References. J. Lindroth.

  22. "Friendship" Interactions and Expression of Agitation among Residents of a Dementia Care Unit

    Kutner, Nancy G; Brown, Peter J; Stavisky, Ronda C; Clark, W Scott; Green, Robert C

    Research on Aging, 2000, 22, 2, Mar, 188-205.

    "Friendships" (ongoing interpersonal interactions) & agitated behavior were studied among 59 residents of a dementia special care unit; most residents had mild to moderate cognitive impairment. Behavior scan data were recorded by trained observers over 6 months: three scans per hour, 7 days a week, between 9 AM & 9 PM, producing 17,000+ observations. A marginal model for binary longitudinal data was developed to associate covariates with repeated observations of agitation, the dependent variable; generalized estimating equations were used to estimate regression parameters. Friendship behavior was significantly associated with (less) observed agitation in these dementia residents, controlling for additional variables expected to predict agitation. Opportunity for self-initiated interpersonal engagement may contribute significantly to the well-being of moderately impaired dementia residents. Repeated over-time assessments are important in understanding factors related to expression of problem behaviors in this population. 4 Tables, 40 References. Adapted from the source document.

  23. Caregivers of Relatives with Dementia: Experiences Encompassing Social Support and Bereavement

    Almberg, Britt E; Grafstrom, M; Winblad, B

    Aging & Mental Health, 2000, 4, 1, Feb, 82-89.

    Interviews conducted with 30 former caregivers of family members with dementia in Stockholm, Sweden, less than 6 months after the death of the care recipient provided data on caregivers' experiences of bereavement & social support during the caregiving period & following the death. A link is found between the two stages. In fact, a central dynamic in caregiver bereavement seems to be the support experienced, as well as the possibility of having continued support from family &/or friends. Caregivers who reported more positive appraisals during the caregiving period were more likely to feel relieved after the death of a relative, & were more satisfied with their social support. 39 References. Adapted from the source document.

  24. Stress and Service Use among Minority Caregivers to Elders with Dementia

    Ho, Cheryl J; Weitzman, Patricia Flynn; Cui, Xingjia; Levkoff, Sue E

    Journal of Gerontological Social Work, 2000, 33, 1, 67-88.

    Research indicates that minority caregivers to elders with dementia use fewer outside social & medical services than do white, European American caregivers, & qualitative research has shown that noncaregiving stressors stemming from family & community environments affect burden & service use among minority caregivers. Attempting to quantitatively evaluate the influence of noncaregiving stress, L. I. Pearlin et al's (1990) model was used to examine the relationship of ethnicity, noncaregiving stressors, & other stress-associated variables to service use by African American, Chinese, & Latino caregivers, with white, European American caregivers serving as a reference group (total N = 117 in Boston, MA). Interview data show that ethnicity, noncaregiving stress, & the dementia-affected elder's impairment level all predict unmet service need. Results also point to the usefulness of a new measure of noncaregiving stress in evaluating service use among minority caregivers. 6 Tables, 2 Appendixes, 40 References. Adapted from the source document.

  25. Behaviors in Dementia: Best Practices for Successful Management

    Pohlmann, Elizabeth (Review of: Kaplan, Mary [Ed]; Hoffman, Stephanie B [Ed])

    Journal of Gerontological Social Work, 2000, 33, 1, 99-100.

  26. Caring for a Loved One with Alzheimer's Disease: A Christian Perspective

    Loizzo, Joseph A (Review of: Hall, Elizabeth T)

    Social Work & Christianity, 2000, 27, 2, fall, 231-233.

  27. Family Members' Perceptions of Quality of Life Change in Dementia SCU Residents

    Kutner, Nancy G; Mistretta, Elizabeth F; Barnhart, Huiman X; Belodoff, Brooke Fielding

    Journal of Applied Gerontology, 1999, 18, 4, Dec, 423-439.

    Global ratings of change in residents' physical, emotional, social, & cognitive functioning were obtained in interviews with family members of 67 special care unit ([SCU] for residents with Alzheimer's or related disorders]) residents & 16 non-SCU control group residents of an intermediate care facility (ICF). In cumulative logistic regression models, with adjustment for covariates (including length of residence in the facility), the odds of being rated by family members as better in emotional & social functioning since entering the facility were significantly greater for SCU than for non-SCU dementia residents. The odds of being rated as better in emotional functioning were also significantly greater for residents of the higher- vs lower-staffed SCU floor. Ratings by institutional caregivers & data collected by direct observation were consistent with these findings. Family members' perception of positive change among residents is a logically desirable SCU outcome. 5 Tables, 33 References. Adapted from the source document.

  28. Culture, Economics, and Alzheimer's Disease: Social Determinants of Resource Allocation

    Topinkova, Eva; Callahan, Daniel

    Journal of Applied Gerontology, 1999, 18, 4, Dec, 411-422.

    Although the US & the Czech Republic have approximately the same proportion of people older than ages 65 & 80, there are striking differences in the response to Alzheimer's disease. In the US, there is considerable public interest, openness about the problem, & a vigorous research effort to cope with the disease. In the Czech Republic, by contrast, there is little government, media, or public interest. The disease is treated as a natural result of aging & thought to be a matter of fate & acceptance rather than calling for a medical response. The cultural & historical reasons for this difference are explored, noting that a change in Czech attitudes & practices, important & necessary, will nonetheless come at a price. Both countries will in the future face new & daunting problems in caring for those with the disease. 20 References. Adapted from the source document.

  29. Use of Community and Long-Term Care by People with Dementia in the UK: A Review of Some Issues in Service Provision and Carer and User Preferences

    Moriarty, J M

    Aging & Mental Health, 1999, 3, 4, Nov, 311-319.

    In the UK, one of the effects of the National Health Service & Community Care Act 1990 has been to highlight the impact of policy changes & changes to service organization on the types & levels of service provision. However, much of the existing literature on the use of community & long-term care services by people with dementia is based on data collected prior to the act's implementation. Some methodological issues are pointed out, & the increasing importance that is likely to be attached to incorporating the service preferences of people with dementia & their carers in the future is highlighted. 1 Table, 71 References. Adapted from the source document.

  30. Making Dementia a Public Policy Issue

    Calder, Rosemary V

    Journal of Family Studies, 1999, 5, 2, Oct, 248-257.

    Dementia has become recognized as a significant aged care issue in Australia in the past 2 decades, focused primarily on the role & quality of long-term institutional & community care for people with dementia & the burden of care for relatives, who are most commonly elderly spouses with or without the support of a significant adult child, & professional carers, through policy initiatives & service developments. Recent advances in both biomedical research & pharmacology suggest the potential for prevention of some dementias & deferment or amelioration of others. Public policy therefore needs to take a public health approach while maintaining emphasis on effective long-term care & carer support strategies. 1 Table, 8 References. Adapted from the source document.

  31. Quality of Life for People with Dementia: Approaches to the Challenge of Measurement

    Bond, John

    Ageing and Society, 1999, 19, 5, Sept, 561-579.

    Contends that different perspectives on dementia in the biomedical, psychological, & social models of disability lead to radically different meanings of the concept of quality of life & approaches to its assessment. These different approaches are examined, & a broad research agenda is proposed, underpinned by two key principles: (1) People with dementia & their informal caregivers should be involved in the development of usable outcome measures relevant to their needs & circumstances. (2) The scientific community, in partnership with those directly affected, should develop a pluralistic approach to the assessment of outcome, taking into account both the meaning of the condition to people with dementia & their informal caregivers &, from a societal perspective, cost utility. 1 Table, 1 Figure, 84 References. Adapted from the source document.

  32. Lifestyle and Health Behaviors among Female Family Dementia Caregivers: A Comparison of Wives and Daughters

    McKibbin, C L; Walsh, W; Rinki, M; Koin, D; Gallagher-Thompson, D

    Aging & Mental Health, 1999, 3, 2, May, 165-172.

    Reports a Stanford U School of Medicine (CA) study comparatively examining the lifestyle & health behaviors of 57 wives & 51 daughters, age 50+, caring for persons with Alzheimer's disease or other forms of dementia. In general, questionnaire & scale data revealed that caregivers were similar to population norms in their age group. They were more likely to consume alcohol than their peers, but they consumed less per day; 48% exercised regularly. Chi-square analysis of wives & daughters revealed only that daughters were more likely to smoke than wives. The two groups appeared similar on all other health behaviors of interest (ie, medication use, alcohol consumption, exercise habits). The need for continued research including samples of less-advantaged caregivers is discussed. 2 Tables, 47 References. Adapted from the source document.

  33. Assessing Quality of Life in Dementia

    Selai, Caroline; Trimble, M R

    Aging & Mental Health, 1999, 3, 2, May, 101-111.

    Quality of Life (QOL) data are an established outcome measure in the assessment of therapeutic interventions. Combined QOL & pharmacoeconomic data are now routinely used to inform decisions about the optimum use of health care resources. All pharmacological & other therapeutic interventions have implications for QOL, & the prospect of drug treatment for Alzheimer's disease raises important questions about the QOL of patients with dementia. Careful economic evaluation of the benefits of potential drug treatments will have to be made, & additional expenditure on drugs balanced against reduced expenditure on hospital & residential care. The assessment of QOL in dementia, however, raises a number of methodological issues, which are summarized here, based a review of the current literature. 2 Tables, 76 References. Adapted from the source document.

  34. Intervention Effects on Dementia Caregiving Interaction: A Stress-Adaptation Modeling Approach

    Corbeil, Robert R; Quayhagen, Mary P; Quayhagen, Margaret

    Journal of Aging and Health, 1999, 11, 1, Feb, 79-95.

    Reports an evaluation of the adequacy of a stress adaptation framework for guiding intervention research on caregivers & patients coping with Alzheimer's disease & tests the effect of a cognitive stimulation intervention as an interactive outcome. Using a repeated measures design, 87 caregiver-patient dyads were randomly assigned to one of three conditions: active cognitive stimulation, passive stimulation, or control. Assessments were conducted pre- & postintervention (at 3 & 9 months). The LISREL model was entirely satisfactory by the chi-square goodness-of-fit criteria. However, the coefficients associated with the paths between the mediating concepts & the dyadic interaction differed significantly at 3 & 9 months. The intervention group caregivers were shown to be more satisfied with their interaction with the care recipient. Improved caregiver satisfaction was attributed to an attenuation of the behavioral stressor effects through increased use of a problem-focused coping strategy, ie, positive reappraisal of the stressful situation. 4 Tables, 1 Figure, 26 References. Adapted from the source document.

  35. The Evolution of Care: A 100-Year History of Institutionalization of People with Alzheimer's Disease

    Lacey, Debra

    Journal of Gerontological Social Work, 1999, 31, 3-4, 101-131.

    In the past 100 years, institutions providing care to people with dementia & Alzheimer's disease have changed from state mental hospitals, county almshouses, & private boarding homes to an industry of 16,000+ mostly privately owned nursing homes. Here, the evolution of care is discussed by examining the intertwining of policy, practice, & theory in shaping the provision of long-term care for elders with Alzheimer's disease. Contributions made by social workers to this process are identified. 87 References. Adapted from the source document.

  36. Dementia and Driving: Perceptions and Changing Habits

    Adler, Geri; Rottunda, Susan; Kuskowski, Michael

    Clinical Gerontologist, 1999, 20, 2, 23-34.

    To better understand the importance of driving in the lives of older adults with dementia, a survey that addressed driving history, driving habits, & attitudes about cessation of driving was administered to 75 drivers with dementia & 75 collateral sources familiar with the patient's driving habits. The drivers, patients drawn from memory loss & geropsychiatry clinics in a midwestern city, had driven for an average of 57.8 years. They drove 5 days per week & in many situations. Results show that 49 patients & 32 collaterals believed that the driver would be able to continue driving throughout the course of the disease. The afflicted driver was the preferred choice to make the decision to discontinue driving, by both patients & collaterals. Findings indicate that both drivers with dementia & their collaterals lack insight into the inevitability of the need to limit & eventually discontinue driving. 3 Tables, 22 References. Adapted from the source document.

  37. Institutionalization in Cognitively-Impaired Older Individuals: A Longitudinal Study

    Molloy, D William; Bedard, Michel; Pedlar, David; Lever, Judith A

    Clinical Gerontologist, 1999, 20, 2, 3-23.

    To explore the relation between institutionalization of cognitively impaired older adults & the progression of their impairment, 30 older adults with cognitive impairment were followed for an average of 3 years, based on abstraction of their medical charts & various follow-up measures. At the 3-year follow-up, 10 had been institutionalized. The only factor significantly associated with institutionalization was the relationship of the caregivers to the care recipients. Individuals cared for by nonspousal caregivers were more likely to be institutionalized, & institutionalized earlier, than individuals cared for by their spouses. These results suggest that social factors are more important determinants of institutionalization than the functional status of the care recipients. A better understanding of these social factors is required to develop support resources for caregivers. 2 Tables, 2 Figures, 56 References. Adapted from the source document.

  38. Communicating with the Alzheimer's Resident: Perceptions of Care Providers in a Residential Facility

    Beach, Diane L; Kramer, Betty J

    Journal of Gerontological Social Work, 1999, 32, 3, 5-26.

    Optimal quality of residential facility care for those suffering from Alzheimer's disease (AD), has been linked to meaningful communication with staff caregivers. Here, to investigate caregivers' perceptions of communication used in dementia-specific community residential facilities, 8 care providers at a midwestern facility were interviewed in depth regarding their communication experiences with AD residents. Employing features of grounded theory methodology, all interviews were audiorecorded, & the verbatim transcripts were coded using an open-coding technique followed by selective coding processes. Results merged into two core categories: (1) compliance gaining strategies & (2) learning the language. Findings indicate that care providers used several communication strategies advocated in the literature, but also employed creative techniques that have not been previously emphasized. 4 Tables, 25 References. Adapted from the source document.

  39. Race and Caregiving: Patterns of Service Use by African American and White Caregivers of Persons with Alzheimer's Disease

    Cox, Carole

    Journal of Gerontological Social Work, 1999, 32, 2, 5-19.

    Telephone interview data from 150 African American & 150 white caregivers seeking assistance from the Alzheimer's Associations in Washington, DC, & Baltimore, MD, indicate that nonuse is pervasive among both groups even though almost all report both needs for & intentions to use information & referral services & support groups. Findings indicate that support groups can have a positive impact on well-being, & efforts should be made to encourage participation, particularly for the most vulnerable caregivers. 4 Tables, 23 References. Adapted from the source document.

  40. The Effectiveness of a Solution-Focused Approach for Problem Behaviors among Nursing Home Residents

    Ingersoll-Dayton, Berit; Schroepfer, Tracy; Pryce, Julie

    Journal of Gerontological Social Work, 1999, 32, 3, 49-64.

    A clinical research project testing the efficacy of a solution-focused approach for addressing problem behaviors of nursing home residents with dementia, a total of 84 family members & nurses' aides participated in a controlled study of 21 residents who were aggressive &/or wandered. A repeated-measures analysis of variance indicated that (1) family members perceived behaviors as less problematic than did nurses' aides; & (2) family members & nurses' aides perceived diminished problems in behaviors over time. Suggestions are offered for both practice & future research. 3 Tables, 30 References. Adapted from the source document.

  41. Three Phase Development of Caring Capacity in Primary Caregivers for Relatives with Alzheimer's Disease

    Bar-David, Geila

    Journal of Aging Studies, 1999, 13, 2, summer, 177-197.

    Interview data from 16 primary caregivers for relatives with Alzheimer's disease are used to describe caregiver self-development through the caregiving journey. Caregiver change is traced up to 5 years after the care recipient's death. Caregivers' capacity for caring was found to be at the core & to unfold in three phases: development of caring capacity for the care recipient, development of capacity for self-care, & development of caring capacity for others. The four elements of caring capacity (perception, motivation, competency, action) are expressed in relation to the care recipient, to the self, & to less familiar others. The caregiving experience tends also to prompt caregivers to become caregivers for humanity & to expand their sense of self. This may lead to the development of the altruistic self, which incorporates both a selfless concern for the welfare of others & a self-directed concern for one's own welfare. 1 Table, 3 Figures, 58 References. Adapted from the source document.

  42. Dementia Services in Managed Care: Issues and Trends

    Cherry, Debra L

    Generations, 1999, 23, 3, fall, 24-29.

    Addresses issues in managed care dementia services, highlighting barriers, pilot & demonstration projects, & future directions. Obstacles to quality managed care include lack of recognition, inadequate diagnostics, systemic communication problems, knowledge gaps, minimal care integration, & coordination. Improvements to such care are being sought via the Kaiser Permanente/Alzheimer's Assoc pilot project, chronic care networks, the Alzheimer's Assoc /Dept of Health & Human Services demonstration project, & the California Workgroup for Alzheimer's Disease Management Guidelines (1998). Future development of dementia services hinges on cost containment; although, in the meantime, providers & advocates can work with local managed care to devise guidelines, while advocates can raise public awareness. 1 Table, 1 Appendix. J. Lindroth.

  43. Dementia in the Elderly: An Overview

    Epstein, David K; Connor, James R

    Generations, 1999, 23, 3, fall, 9-16.

    Overviews genetic & environmental causes of common dementia along with factors related to other kinds of dementia. Alzheimer's disease is most frequently diagnosed, followed by vascular dementia. Less formal education, head trauma, & metal toxicity are environmental factors thought to contribute to dementia. Infectious causes include Creutzfeldt-Jakob disease & conditions related to human immunodeficiency virus (HIV); however, infectious transmission is an uncommon cause of dementia. In addition, irregular metabolic activity & oxidative stress are discussed. Various therapeutic approaches are described. 31 References. J. Lindroth.

  44. Swedish Group Homes for People with Dementia

    Malmberg, Bo

    Generations, 1999, 23, 3, fall, 82-84.

    Discusses Swedish group homes for dementia patients. The basic principle underpinning the idea is to create a homelike space specifically designed for demented people; a typical group home is described. The first four group homes in Jonkoping are evaluated, finding that, at admission, the main problem was that patients were far more impaired than providers were prepared for. After the first year, 36 of 40 residents remained, with only 2 removed for problem behavior beyond the purview of the care providers. Group home staff rated their coworkers positively & reported that the main problem was the extent of resident dementia & its negative impact on staff ability to motivate residents to perform therapeutic activities. Follow-up evaluation 4 & 5 years after opening revealed that 12 residents still lived there, with 18 moved to another facility for reasons of declining health & mobility or difficulty managing particular residents; aggression seems to be the prevalent reason. Disruptive behavior appears to inhibit this social approach for lack of geropsychiatric expertise. 6 References. J. Lindroth.

  45. The Policy Challenges of Alzheimer's Disease

    McConnell, Stephen; Riggs, Judith

    Generations, 1999, 23, 3, fall, 69-74.

    Explores health care policy issues with respect to Alzheimer's disease, making recommendations for various problematic dimensions. Deficiencies in health insurance are noted: Medicare does not cover chronic care management despite the chronic health care needs of Alzheimer's patients. Long-term care is addressed, highlighting the need to assist family caregivers & make possible extrafamily services for all. Integrated care delivery systems & accelerated Alzheimer's disease research are advocated. 21 References. J. Lindroth.

  46. The Person in Dementia Care

    Woods, Bob

    Generations, 1999, 23, 3, fall, 35-39.

    Explores the issue of personhood in dementia sufferers, arguing that discussion of the disorder is often framed in terms of a living death or as worse than death & touches on the issue of voluntary euthanasia, all of which impacts the approach to care & skills required for such care. Shifts in approaches to dementia are critiqued: emphasizing individuality, giving voice & seeking the perspective of the dementia patient, depersonalization of dementia sufferers by virtue of reduced cognitive functioning, & social-relational creation or diminishment of personhood. The latter approach is discussed in terms of the possibility of improved care provision wherein the dementia patient is placed on more equal footing with the rest of society. 20 References. J. Lindroth.

  47. Support Groups and Other Services for Individuals with Early-Stage Alzheimer's Disease

    Yale, Robyn

    Generations, 1999, 23, 3, fall, 57-61.

    Explores the emergence of support groups & other models & services for early-stage Alzheimer's disease sufferers. Following a brief discussion of the Alzheimer's stereotype, the role of support groups & their themes & interactions are delineated. A model program is described. Support group development is qualified by four caveats stressing the individuality & complexity that each person brings to the program: (1) A delicate balance must be sought. (2) Skilled professional facilitators must lead the groups. (3) Cultural variations must be considered. (4) Denial must be approached without confrontation. Clubs, counseling, case management, legal planning, & family consultation services are noted. 14 References. J. Lindroth.

  48. Optimum Residential Care for People with Dementia

    Zimmerman, Sheryl Itkin; Sloane, Philip D

    Generations, 1999, 23, 3, fall, 62-68.

    Discusses residential care for dementia patients, drawing on 1997 /98 data for 193 such facilities in FL, MD, NJ, & NC, & 2,081 residents, ages 65+, gathered via interviews with administrators, care providers, & residents. For residents, 24%-42% were found to have moderate to severe dementia; dementia-sensitive care areas are identified in 22 facilities; in small & traditional facilities, 81%-83% of dementia sufferers are cared for in general care areas, while in "new model" facilities, 67% are in general areas. The status of dementia care in residential facilities is considered, concluding that, on the whole, these facilities do not seem designed for people with dementia, although structural components & other features for good dementia care do exist. End-of-life care for dementia patients is addressed. 3 Tables, 30 References. J. Lindroth.

  49. Effects of Caregiver Communication on the Outcomes of Requests in Spouses with Dementia of the Alzheimer Type

    Hendryx-Bedalov, Patricia M

    International Journal of Aging and Human Development, 1999, 49, 2, 127-148.

    To examine caregiver communication with spouses who have Alzheimer's disease, three clinical & three matched nonclinical couples in WA were studied for the effectiveness of their discourse in eliciting outcomes to requests made to spouses. Caregivers in the clinical couples were less likely to achieve successful outcomes than dominant communicators in the nonclinical couples. In studying the context for the requests, differences could not be attributed to the degree of concreteness of reference that was used. More abstract & less abstract references were equally likely to be responded to by two of the three clinical couples. Differences in the styles of communication by the caregivers contributed to outcomes & reflected a self-reported degree of strain or comfort in the couples' relationships. Suggested is a method of study of outcomes that could be used in clinical assessment & intervention for nonresponsiveness & noncompliance with dementia patients. 5 Tables, 50 References. Adapted from the source document.

  50. Case Manager-Defined Roles in the Medicare Alzheimer's Disease Demonstration: Relationship to Client and Caregiver Outcomes

    Arnsberger, Pamela; Fox, Patrick; Zhang, Xiulan

    Care Management Journals, 1999, 1, 1, winter, 29-37.

    Explores the different approaches to case management in the Medicare Alzheimer's Disease Demonstration. Eight US sites were selected to participate in a survey of case managers (N = 57) that evaluated their professional background & experience & how certain tasks, functions, & goals of case management were prioritized at each site. Client & caregiver outcomes were collected on a site-by-site basis as part of the demonstration. The hypothesis was that the way in which case managers performed their work would vary by site. Further, it was hypothesized that these differences would be measurable & correlated with project outcomes. Case managers differed significantly by site in how they prioritized tasks, functions, & goals, viewing themselves along a continuum from a clinical approach to one that emphasizes service management. These differences in case management style are reflected in between-site differences in certain client & caregiver outcomes, but not others. Specifically, variations in case management styles are not related to client cognitive or functional status but to other outcomes, eg, behavioral management, caregiver burden, & service use. 3 Tables, 1 Figure, 29 References. Adapted from the source document.

  51. The Roles of Friends and Neighbours in Providing Support for Older People

    Nocon, Andrew; Pearson, Maggie

    Ageing and Society, 2000, 20, 3, May, 341-367.

    Reports the findings from interviews of 29 friends & neighbors who are the main carers of frail older people in northern England. Focus is on the support arrangements, the reasons why help was provided, & any difficulties experienced. Several friends & neighbors provided intensive & frequent help, & some played a key role in coordinating other services. One of the main forms of direct support related to older people's quality of life, at a broader level than the practical help provided by statutory services. The flexibility of such support, & the friends' & neighbors' concern for older people as individuals, were particularly important to the people they helped. Nevertheless, such help was not provided without costs to the carers. The need for policymakers & practitioners to address such support & provide needed services are emphasized. 1 Table, 45 References. Adapted from the source document.