Background: With the aging of the global population, the prevalence and incidence of Alzheimer’s disease or related dementia are increasing. Most mild or moderate dementia clients are taken care of at home by informal caregivers, which leave a heavy burden to the caregivers. Researchers have found out that with good intervention services and programmes for the caregivers, their burden, emotional distress and even the care recipients’ symptoms and institutionalization rates would be improved. Objectives: This project is to review these researches to evaluate whether the interventions are effective and/ or cost-effective and how the decision-makers could use the results for evidence-based policy. Methods: A literature search was performed on randomized controlled trials in education, information/ support intervention programmes published from October 2005 to July 2012. Electronic databases (EBSCO, PubMed and CNKI) were searched until July 2012. The Consolidated Standards of Reporting Trials (CONSORT) checklist for reporting randomized controlled trials was used as the guideline to evaluate the quality of identified papers. Results: 16 papers (15 studies) were included in this review and classified into three groups, as home-based, individual-based and group-based interventions. This review found that the intervention programmes had various outcomes and showed some evidence of effectiveness. Most of the papers had good quality. The home-based programmes showed cost-effectiveness in the identified studies. Conclusion: There was some evidence that the home- and group-based interventions were effective and the home-based interventions could be cost-effective. Further studies are recommended and a meta-analysis on the studies and more researches on economic analysis are needed. A community-based long-term dementia management should be built up for better outcomes. / published_or_final_version / Public Health / Master / Master of Public Health

published_or_final_version / Medical Sciences / Master / Master of Medical Sciences

Agitated behaviours in dementia elderly predispose to negative outcomes. Music intervention is an evidence-based intervention that could help to ease the situation. The integrative and systematic review studies provide evidence that music intervention is effective in reducing agitated behaviours in dementia elderly. The assessment of the implementation potential, the feasibility and transferability demonstrate the music intervention can be implemented in local setting. An evidence-based guideline based on the reviewed papers is developed to use in local HK hospitals or nursing homes. With the help of an effective communication plan to the stakeholders, it is believed that the intervention can be smoothly implemented. Further evaluation helps to review the potentials for sustaining the intervention in the long run. / published_or_final_version / Nursing Studies / Master / Master of Nursing

Caregiving for two parents affected by chronic dementia was the original impetus for this study. My negative experiences led to a quest for insight and solutions through volunteer, professional and academic pursuits. It culminated in this exploration of caregivers' experiences and their decision-making to expose the educational support they need. Caregivers tend to be family members, and overwhelmingly women. Studies from various disciplines confirm that caregivers need educational support to make decisions. Yet, little is known about what type of educational support they need and how it is to be provided. Caregivers' voices are seldom included in research and they are frequently blamed for the problems they confront. This qualitative study honours caregivers' voices. Through in-depth semi-structured interviews, the perspectives of five women form my primary source of data. Personal documentation, archival materials, and interviews with experts in the field supplement these data. To analyze the data two complementary analytic approaches are used: categorization and contextualization. A categorization approach organizes the data into conceptual themes. These themes include activities of multitasking, being locked into a state of heightened alert, interpreting the disease, and managing care. These activities reveal physical and psychological suffering. Contextualization approaches situate the dilemmas the women face in particular contexts. These dilemmas highlight their lack of authority. The analyses indicate that the women engage in a wide range of decision-making and that they need both similar and specific types of educational support. These types of support include (1) lessening their burdens and their frustrations of decision-making; (2) facilitating ethical decision-making; (3) providing information about medical treatments; and (4) assisting with the access to and with the assessment of suitable resources. Overall, caregiving is a ve

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This thesis explores the communication of a group of older people with dementia living in a residential care home and specifically, seeks to understand how living with dementia in a care home influences communication. The study draws broadly on a symbolic interactionist perspective and uses an ethnographic, inclusive, video methodology. In so doing, the study grounds the research in the experiences of the older residents with dementia and explores communication as it is interwoven with social life. The empirical data, on which this thesis is based, were gathered over the course of six months in one residential care home in Central Scotland. Analysis of these data, in conjunction with the theoretical literature informing the study, led to the development of a framework and a set of concepts to understand the communication of the older people with dementia living in residential care. This framework was used to examine the ways in which the older residents' experiences of institutionalisation, ageing, and dementia, generally, and of life in the care setting, specifically, influenced their communication. The findings revealed that the older residents made diverse meanings of their experiences in the home, and mat many of the meanings that they made were threatening to their self-identity, self-determinacy and social relationships. The residents engaged in a range of strategies to respond to the impact of these meanings and to negotiate their life in the care home. The research presented in this thesis has many implications for understanding the experiences of older people with dementia in residential care. In particular, the research highlights the need for a new social understanding of dementia, that examines the experience of dementia in relation to broad structural and cultural processes and that seeks to promote the social inclusion and citizenship of older people with dementia.

This study is a mixed-method study that seeks to develop a set of institutional dementia care indicators to evaluate quality of care and inform the improvement of quality of life (QOL) for Taiwanese people with dementia living in care homes. It also uses comparative analysis to compare the different features of policy and its delivery in dementia care between Scotland and Taiwan, a comparison designed to aid the development of dementia care policy, and the establishment of quality indicators for institutional dementia care, in Taiwan. This study employed the person-centred care approach at the micro perspective, and the total quality management (TQM) approach at the macro perspective, in order to inform a seamless care model for people with dementia living in care homes. Data were collected in two stages: comments from experts in dementia care were recorded in an exercise using “Delphi” methodology; subsequently the opinions of service receivers were recorded in a fieldwork exercise. The Delphi exercise (stage one) acted as the pre-test, involving 24 experts in dementia care in Scotland and Taiwan in evaluating the usefulness and applicability of proposed quality indicators for institutional dementia care. Quantitative and qualitative data from the Delphi panel were analyzed. The fieldwork (stage two) collected 237 questionnaires (from 122 residents with dementia and 115 family members) in 14 Taiwanese care homes for people with dementia (including special care units within care homes). The field test data were analyzed using reliability and item analysis, confirmatory factor analysis (CFA), and descriptive and inferential statistics. Initially, 43 proposed quality indicators for institutional dementia care were identified through literature review. However, after two Delphi rounds, only six key dimensions (41 quality indicators) were identified by consensus as the important items for use in measurement of quality of care for people with dementia living in Taiwanese care homes. Through reliability and item analysis, and CFA, this research developed a model which is a three-factor structure (social care, health and personal care, and environment) with 18 quality indicators. The 18 quality indicators have high reliability, validity, and credibility and load onto a second order factor which represents quality of care for people with dementia living in care homes. Further analysis was then conducted to explore how relative ratings on these three factors differed according to measured characteristics of the residents and their family members. In general, only a few strong patterns of difference emerged and multiple linear regression analysis suggested that differences in ratings could not be attributed to influences of socio-economic and socio-demographic differences between respondents. The study concludes that the Delphi method could be used as a methodology for health services research to integrate the opinions of multidisciplinary dementia experts and that CFA is an effective technique to study the empirical factor structure. The findings suggest that the 18 quality indicators could be suitable criteria for people with dementia and their family members to evaluate care quality and select an appropriate care home. The indicators also have important policy implications for the Taiwanese Government and regulations intended to ensure that care homes meet the requirements of service receivers.

Thesis (MA)--Stellenbosch University, 2013. / ENGLISH ABSTRACT: Dementia is a chronic illness characterised by the progressive deterioration of cognitive functions. Patients diagnosed with dementia are most often cared for by family members. Families caring for dementia patients are faced with tasks that are physically exhausting and psychologically distressing. Nevertheless, some families show resilience and are able to overcome the adversity of the illness. This study aimed to identify and explore the resilience factors these families utilised to rise above the hardships faced when caring for a demented family member. The study was based on McCubbin and McCubbin’s (1996) Family Resiliency Model of Family Stress, Adjustment and Adaptation and Walsh’s (2002, 2003) Family Resilience Framework. A mixed-methods approach was followed to collect data from a convenience sample drawn from the Cape Metropolitan area in the Western Cape, South Africa. The study sample comprised of families in which either a spouse (n = 44) was caring for a partner with dementia or adult children (n = 47) were caring for a parent with dementia. The family resilience factors of these subgroups were explored separately and were compared with each other. The quantitative data analysis was conducted using analyses of variance (ANOVA), Pearson’s product-moment correlation coefficients, and a best-subsets multiple regression analysis. Qualitative data were analysed using thematic content analysis. These analyses revealed that positive communication patterns, acceptance, optimism, family hardiness, family connectedness, and the effective management of symptoms facilitated family adaptation in both the spouse and child subgroups. Negative patterns of communication within the family was the only variable that was inversely related to family adaptation in both family subgroups. The level of adaptation in the different family subgroups did not differ significantly, but the subgroups did differ slightly in terms of their communication patterns, coping strategies and social support avenues utilised. In addition to expanding the current literature regarding family resilience, the body of information collected in this study could be used to help families caring for dementia patients to create a family environment that maximises adjustment and adaptation. The results could also be used in the development and evaluation of intervention programmes tailored to the needs of these family subgroups. / AFRIKAANSE OPSOMMING: Demensie is 'n chroniese siekte wat gekenmerk word deur die progressiewe agteruitgang van kognitiewe funksies. Pasiënte wat met demensie gediagnoseer word, word meestal deur familielede versorg. Gesinne wat sorg vir demensiepasiënte word gekonfronteer met take wat fisies uitputtend en sielkundig ontstellend is. Tog toon sommige families volharding en is hulle in staat is om die teëspoed van hierdie siekte te oorkom. Hierdie studie het gepoog om die veerkragtigheidsfaktore te identifiseer en verken wat deur families wat 'n familielid met demensie versorg, aangewend word om bo hulle omstandighede uit te styg. Die studie is gebaseer op McCubbin en McCubbin (1996) se Family Resiliency Model of Family Stress, Adjustment and Adaptation en Walsh (2002, 2003) se Family Resilience Framework. Beide kwalitatiewe en kwantitatiewe data-insamelingsmetodes is in hierdie studie gebruik. 'n Gerieflikheidsteekproef is uit die Kaapse Metropolitaanse gebied in die Wes-Kaap, Suid- Afrika gewerf en het bestaan uit gesinne waarvan eggenote (n = 44) vir hulle eggenoot met demensie sorg of volwasse kinders (n = 47) vir ’n ouer met demensie sorg. Die gesinsveerkragtigheidsfaktore van hierdie subgroepe is afsonderlik ondersoek en met mekaar vergelyk. Die kwantitatiewe data-analise is via variansieontleding (VARO), die berekening van Pearson se produkmoment-korrelasiekoëffisiënte, en beste-subset regressie-analises uitgevoer. Kwalitatiewe data is met behulp van tematiese inhoudanalise ontleed. Hierdie analises het getoon dat positiewe kommunikasiepatrone, aanvaarding van die situasie, optimisme, familie gehardheid, familie verbondenheid, en die doeltreffende bestuur van demensiesimptome familie aanpassing in beide die eggenoot- en kind-subgroepe gefasiliteer het. Negatiewe, opruiende kommunikasiepatrone binne die gesin was die enigste veranderlike wat in beide subgroepe 'n omgekeerde verwantskap met familie aanpassing gehad het. Die vlak van aanpassing in die verskillende familie subgroepe het nie beduidend verskil nie, maar die subgroepe het effens verskil in terme van hulle kommunikasiepatrone, streshanteringstrategieë, en bronne van sosiale ondersteuning. Die resultate van hierdie studie brei uit op die huidige literatuur oor gesinsveerkragtigheid en kan gebruik word om families wat vir demensiepasiënte sorg te help om 'n familie-omgewing te skep wat die gesin se aanpasbaarheid verbeter. Die resultate kan ook gebruik word in die ontwikkeling en evaluering van intervensieprogramme wat die behoeftes van hierdie subgroepe teiken.

published_or_final_version / Social Work and Social Administration / Doctoral / Doctor of Philosophy

Hospitalizations are a major driver of Medicare spending and adverse outcomes for the 5.3 million elderly Americans with dementia. This is a growing problem given aging and longevity trends. Within the home health care setting, about 3.5 million mostly frail elderly Medicare beneficiaries receive care and 27% are hospitalized annually. Estimates of dementia prevalence range from 31 to 60%, yet little is known about the hospitalization of home health care patients with dementia. This study addresses knowledge gaps on the prevalence, characteristics, hospitalization rate and risk factors of these patients, and explores whether hospitalization risk factors are moderated by dementia. A systematic literature review on hospitalization risk factors in the home health care setting was completed and the findings informed the selection of variables and hypotheses for this study. This was a retrospective cohort study and the sample was patients admitted to one large non-profit home health care agency during 2014 (n=57,888). Data were from the Outcome and Assessment Information Set and other home health agency data captured at the start of care. The conceptual framework guiding the analysis was Andersen’s Behavioral Model of Health Services Use. Because more than half of those who would meet clinical criteria for dementia are undiagnosed, the operational definition of dementia for this study was a diagnosis of dementia or Alzheimer’s disease, or an indication of cognitive impairment in the start of care assessment. Multivariable logistic regression was used to identify characteristics of dementia patients and hospitalization risk factors, and to explore dementia as a moderator of hospitalization risk factors. Prevalence of dementia among the study sample was 41.6%. Consistent with prior studies on the general dementia population, older age, Black and Hispanic race/ethnicity, Medicaid eligibility, fall risk, congregate living, more comorbidities, behavioral symptoms, depression, assistance with activities of daily living, and communication disabilities were associated with dementia. However, contrary to prior studies, serious health status, higher need for assistance with activities of daily living, and higher use of health services were negatively associated with dementia. The hospitalization rate for patients with dementia (12.9%) was significantly higher than the rate for patients without dementia (10.7%). Hospitalization risk factors of dementia patients that were consistent with prior studies among home health patients included male gender, Black race, Medicaid eligibility, number of comorbidities, higher need for assistance with activities of daily living, cardiovascular conditions, dyspnea, cancer, diabetes, renal disease, skin ulcers and higher health services use. The moderator analysis found that dementia attenuated the effect of some hospitalization risk factors and had no effect on others. This study was a first step toward better understanding the characteristics and hospitalization risk factors of home health care patients with dementia. Findings from this research can inform practice, policy and future research on home health care patients with dementia.