Tsao Foundation's annual report on 2016 is here. Thank you to all partners and friends for another successful year of enabling opportunities in health, welbeing and fulfilment in our society of longer lives.
ABDIN, E., SUBRAMANIAM, M., ACHILLA, E., CHONG, S. A., VAINGANKAR, J. A., PICCO, L., … MCCRONE, P. (2016). THE SOCIETAL COST OF DEMENTIA IN SINGAPORE: RESULTS FROM THE WISE STUDY. JOURNAL OF ALZHEIMER’S DISEASE: JAD, 51(2), 439–449. http://doi.org/10.3233/JAD-150930
BACKGROUND: There is currently limited evidence on the economic burden that dementia exerts on multi-ethnic Asian populations. OBJECTIVE: The present study aimed to estimate the economic cost of dementia in Singapore. METHODS: We used data from the Well-being of the Singapore Elderly study, a nationally representative survey of the older Singapore Resident population aged 60 years and above. Generalized linear modeling was used to estimate factors associated with costs. RESULTS: The total cost of dementia in 2013 was estimated at S$532 million (95% CI, S$361 million to S$701 million) while the annual cost per person was estimated at S$10,245 per year (95% CI, S$6,954 to S$12,495). Apart from dementia, higher total societal cost were also significantly associated with older age, Indian ethnicity, and those who were diagnosed with heart problems, stroke, diabetes or depression, whereas being divorced/separated, lower education, and those who were diagnosed with hypertension were significantly associated with lower total societal cost. CONCLUSION: The study provides a rich body of information on healthcare utilization and cost of dementia, which is essential for future planning of services for the elderly population.
CHENG, S.-T., MAK, E. P. M., LAU, R. W. L., NG, N. S. S., & LAM, L. C. W. (2016). VOICES OF ALZHEIMER CAREGIVERS ON POSITIVE ASPECTS OF CAREGIVING. THE GERONTOLOGIST, 56(3), 451–460. http://doi.org/10.1093/geront/gnu118
Purpose: To discover positive gains as constructed by family caregivers of relatives with Alzheimer’s disease. Design and Methods: Fifty-seven Hong Kong Chinese primary caregivers provided 669 diary recordings over an 8-week period, describing daily events and experiences in which positive gains were achieved. The diaries were analyzed independently by two researchers using thematic analysis. Results: Ten themes related to positive gains were identified: (a) insights about dementia and acceptance of the condition, (b) a sense of purpose and commitment to the caregiving role, (c) feelings of gratification when the care-recipient (CR) was functioning relatively well, (d) mastering skills to handle the CR, (e) increased patience and tolerance, (f) cultivating positive meanings and humor amidst difficult circumstances, (g) letting go of things, such as when the CR’s qualities had been lost or personal agenda had become unrealistic, (h) developing a closer relationship with the CR, (i) finding support, and (j) feeling useful helping other caregivers. Implications: In addition to treating negative outcomes such as depression, practitioners and researchers should, identify means to promote positive gains. Strategies mentioned in the caregivers’ diaries, such as reframing stressful situations in a more positive light, may provide input into the design of such interventions.
CHONG, M. S., TAN, C., YEO, C., LOW, K. Y., ANTHONY, P., CHIA, K. L., … YAN NG, K. M. (2014). DEMENTIA CARE INTEGRATION BETWEEN PRIMARY CARE PROVIDER AND TERTIARY HOSPITALIST: AN INNOVATIVE DEMENTIA SHARED CARE MODEL. ALZHEIMER’S & DEMENTIA, 10(4, Supplement), P577. http://doi.org/10.1016/j.jalz.2014.05.953
CHONG, M. S., TAN, W. S., CHAN, M., LIM, W. S., ALI, N., ANG, Y. Y., & CHUA, K. C. (2013). COST OF INFORMAL CARE FOR COMMUNITY-DWELLING MILD–MODERATE DEMENTIA PATIENTS IN A DEVELOPED SOUTHEAST ASIAN COUNTRY. INTERNATIONAL PSYCHOGERIATRICS, 25(09), 1475–1483. http://doi.org/10.1017/S1041610213000707
ABSTRACT Background: Cost of informal care constitutes an important component of total dementia care cost. It also reflects resource utilization by patients and caregivers. We aim to quantify the informal cost of care for mild to moderate dementia patients. Methods: We recruited 165 patient–caregiver dyads with mild to moderate dementia. Informal care burden was assessed using the Resource Utilization in Dementia (RUD)-Lite instrument. A generalized linear model was fitted for association between cost of informal care and cognitive impairment, taking into account patient demographics, disease factors, and use of paid domestic help. Marginal estimates were obtained from the model for the purpose of illustration and discussion. Results: Total hours of informal care by primary caregiver doubled in moderate dementia patients, with 57.9% having paid domestic help to assist in care. Functional factors and use of paid domestic help were significantly associated with informal care costs. Costs were consistently higher for patients without paid domestic help for mild- and moderate dementia. Conclusion: This study demonstrates the informal care costs of caring for mild–moderate dementia patients in Singapore, with the unique cost savings provided by live-in paid domestic help, and potentially may aid policy-makers in allocation of resources and support to caregivers.
LIM, J., GOH, J., CHIONH, H. L., & YAP, P. (2012). WHY DO PATIENTS AND THEIR FAMILIES NOT USE SERVICES FOR DEMENTIA? PERSPECTIVES FROM A DEVELOPED ASIAN COUNTRY. INTERNATIONAL PSYCHOGERIATRICS, 24(10), 1571–1580. http://doi.org/10.1017/S1041610212000919
ABSTRACT Background: Despite the need for community services to support the intensive levels of care provided by dementia family caregivers, findings consistently indicate low rates of service utilization. This study aims to explore the extent of service use and examine the factors that may influence the use of services in a sample of family caregivers of Persons With Dementia (PWD). Methods: Two hundred and seventy-two family caregivers completed a questionnaire assessing caregiver burden, knowledge and use of services, dementia severity, frequency of problem behaviors and socio-demographic characteristics. Results: The rate of service use was modest with 39.9% using any of the available services. Reasons for non-use included lack of time (26.2%), perceived lack of need (18.5%), and presence of domestic help (21%). Separate regression models were evaluated to identify factors associated with caregiver service use and PWD service-use. Caregiver employment status (OR = 0.53, CI = 0.30–0.94) and knowledge of available services (OR = 4.22, CI = 2.23–7.98) contributed significantly to the model distinguishing caregiver service users from non-users. Knowledge of available services (OR = 2.14, CI = 1.23–3.71) was the only significant predictor of service use targeted at the PWD. Conclusions: Given that knowledge significantly increased the odds of service use, strategies should be designed to raise awareness about the availability of dementia support services in the community and provide a deeper understanding about the value of such services. Future research should employ larger sample sizes and explore factors not measured in this study that might potentially better explain use of services.
MEI, N. M., CHOONG, T. M., HOON LINDA, L. L., LYN NG, A. S., SENG TING, S. K., HAMEED, S., & KANDIAH, N. (2015). ROLE OF SPECIALIST-PRIMARY CARE COLLABORATION IN THE MANAGEMENT OF EARLY DEMENTIA. ALZHEIMER’S & DEMENTIA, 11(7, Supplement), P584–P585. http://doi.org/10.1016/j.jalz.2015.06.781
NETTO, N. R., JENNY, G. Y. N., & PHILIP, Y. L. K. (2009). GROWING AND GAINING THROUGH CARING FOR A LOVED ONE WITH DEMENTIA. DEMENTIA, 8(2), 245–261. http://doi.org/10.1177/1471301209103269
Aim: To investigate the gains experienced by family caregivers of persons with dementia. Methods: Twelve respondents were recruited using purposive sampling from three institutions around Singapore. A qualitative design, guided by the grounded theory approach, was adopted and involved semi-structured, in-depth, face-to-face interviews. The interviews were recorded, transcribed and analyzed using open, axial and selective coding. Results: All caregivers interviewed reported having gained from caregiving. The most common gain was that of `personal growth’ which comprised being more patient/understanding, becoming stronger/more resilient, having increased self-awareness and being more knowledgeable. Another theme that emerged was `gains in relationships’ whereby caregivers experienced an improvement in their relationship with the care recipient, with others in the family or in their ability to interact with other older persons. The third gain experienced was that of `higher-level gains’ which encompassed gains in spirituality, deepened relations with God, and a more enlightened perspective in life. Discussion: This research supports a shift from the conventional focus on burdens to a more holistic approach that considers how caregivers can grow and emerge stronger from the caregiving experience. This has implications in the design and delivery of services as utilizing these gains as a coping resource may enable better support for caregivers. It is pertinent that professionals supporting caregivers internalize the perspective of gains so that it becomes a natural way of seeing their clients and in the process help caregivers find meaning and enrichment in their caregiving journey.
NG, T. P., LEONG, T., CHIAM, P. C., & KUA, E.-H. (2010). ETHNIC VARIATIONS IN DEMENTIA: THE CONTRIBUTIONS OF CARDIOVASCULAR, PSYCHOSOCIAL AND NEUROPSYCHOLOGICAL FACTORS. DEMENTIA AND GERIATRIC COGNITIVE DISORDERS, 29(2), 131–138. http://doi.org/10.1159/000275668
BACKGROUND: Ethnic variations in dementia rate have been reported worldwide. Understanding these differences is vital for aetiological research, clinical care and health service planning. While age and gender have been consistently implicated, the reasons behind interethnic variation remain unclear. METHOD: We used data from the Singapore National Mental Health Survey (Elderly) in 2003, a cross-sectional population-based study to investigate the extent to which differences in cardiovascular risk factors, psychosocial factors and cognitive functional status contributed to ethnic differences in dementia prevalence among Chinese, Malays and Indians. RESULTS: Ethnic differences in dementia prevalence (4.2% in Chinese, 9.4% in Malays and 8.8% in Indians) were not explained by differences in gender, age and education (Malays vs. Chinese: adjusted OR = 3.11; Indians vs. Chinese: OR = 4.30). Differences in cardiovascular factors, depression or leisure time activities contributed modestly to the differences, but the OR remained significantly elevated. Differences in Mini-Mental State Examination scores contributed the most to explaining the ethnic differences (Malays vs. Chinese: adjusted OR = 0.73; Indians vs. Chinese: OR = 1.18). CONCLUSION: Cognitive functional reserve accounted for much of the ethnic differences in dementia prevalence and its assessment has implications for the detection and treatment of dementia in multiethnic populations.
RESEARCH - PROFILING THE DEMENTIA FAMILY CARER IN SINGAPORE.PDF. (N.D.). Retrieved from http://www.alz.org.sg/sites/alz.org.sg/files/Research%20-%20Profiling%20the%20dementia%20family%20carer%20in%20Singapore.pdf
SAHADEVAN, S., SAW, S. M., GAO, W., TAN, L. C. S., CHIN, J. J., HONG, C. YE, & VENKETASUBRAMANIAN, N. (2008). ETHNIC DIFFERENCES IN SINGAPORE’S DEMENTIA PREVALENCE: THE STROKE, PARKINSON’S DISEASE, EPILEPSY, AND DEMENTIA IN SINGAPORE STUDY. JOURNAL OF THE AMERICAN GERIATRICS SOCIETY, 56(11), 2061–2068. http://doi.org/10.1111/j.1532-5415.2008.01992.x
OBJECTIVES: To study the prevalence of dementia in Singapore among Chinese, Malays, and Indians. DESIGN: A two-phase, cross-sectional study of randomly selected population from central Singapore with disproportionate race stratification. SETTING: Community-based study. Subjects screened to have cognitive impairment at phase 1 in their homes were evaluated clinically for dementia at phase 2 in nearby community centers. PARTICIPANTS: Fourteen thousand eight hundred seventeen subjects aged 50 and older (67% participation rate). MEASUREMENTS: The locally validated Abbreviated Mental Test was used to screen for cognitive impairment at phase 1. Dementia was diagnosed at phase 2 as per Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition criteria. Possible Alzheimer’s disease (AD) and possible vascular dementia (VD) were diagnosed along the National Institute of Neurological and Communicative Disorders—Alzheimer’s Disease and Related Disorders Association and National Institute of Neurological Disorders and Stroke—Association Internationale pour la Recherche et l’Enseignement en Neuroscienes criteria, respectively. RESULTS: The overall age- and race-standardized dementia prevalence was 1.26% (95% confidence interval (CI)=1.10–1.45). Prevalence (in 5-year age bands) was 0.08% (50–54), 0.08% (55–59), 0.44% (60–64), 1.16% (65–69), 1.84% (70–74), 3.26% (75–79), 8.35% (80–84), and 16.42% (≥85). From age 50 to 69, 65% of dementia cases were VD; at older ages, 60% were AD. Logistic regression (adjusted for age, sex, education) showed that Malays had twice the risk for AD as Chinese, and Indians had more than twice the risk for AD and VD than Chinese. CONCLUSION: Singapore’s dementia prevalence, primarily influenced by its Chinese majority, is lower than seen in the West. The striking interethnic differences suggest a need for a dementia incidence study and further investigation of underlying genetic and cultural differences between the three ethnic groups in relation to dementia risk.
SETIA, M., ISLAM, A. M., THOMPSON, J. P., & MATCHAR, D. B. (2011). STAKEHOLDERS’ PERSPECTIVE ON ISSUES AND CHALLENGES ASSOCIATED WITH CARE AND TREATMENT OF AGING-RELATED COGNITIVE IMPAIRMENT DISORDERS IN SINGAPORE. INTERNATIONAL PSYCHOGERIATRICS, 23(09), 1421–1432. http://doi.org/10.1017/S1041610211000846
ABSTRACT Background: An expanding elderly population poses challenges for the provision of care and treatment for age-related physical and mental disorders. Cognitive impairment (CI)/dementia is one such mental disorder that is on the rise in Singapore and has concomitant implications for social and health systems. The objective of this study is to understand the perspectives of prominent stakeholders about current and future issues and challenges associated with CI/dementia among the elderly in Singapore.Methods: Using indepth interviews, this qualitative study obtained the views of multiple stakeholders on issues and challenges associated with CI/dementia in Singapore. The 30 individuals interviewed as part of the study included clinicians, policy-makers, researchers, community workers, administrators, and caregivers. Using a framework approach, interview texts were indexed into domains and issues by utilizing NVivo 9.0 software.Results: The stakeholders expressed concerns related to multiple domains of the CI/dementia care system: attitude and awareness, economics, education, family caregiving, inputs to care system, living arrangements, prevention, screening and diagnosis, and treatment and management of care. Within each domain, multiple issues and challenges were identified by respondents.Conclusions: The study identifies a complex set of inter-related issues and challenges that are associated with the care and treatment of people with CI/dementia. The results suggest that CI and dementia profoundly affect patients, families, and communities and that the issues related to the two disorders are truly system-wide. These findings lay the foundation for utilization of a systems approach to studying CI/dementia and provide an analytic framework for future research on complex health care issues.
SUBRAMANIAM, M., CHONG, S. A., VAINGANKAR, J. A., ABDIN, E., CHUA, B. Y., CHUA, H. C., … PRINCE, M. (2015). PREVALENCE OF DEMENTIA IN PEOPLE AGED 60 YEARS AND ABOVE: RESULTS FROM THE WISE STUDY. JOURNAL OF ALZHEIMER’S DISEASE: JAD, 45(4), 1127–1138. http://doi.org/10.3233/JAD-142769
BACKGROUND: The challenge of an aging population with its expected attendant problem of an increase in the number of people with dementia is a growing concern across the world. OBJECTIVE: The aims of this study were to establish the prevalence and risk factors of dementia in Singapore among the elderly resident population (aged 60 years and above). METHODS: The WiSE study was a comprehensive single phase, cross-sectional, epidemiological survey that adapted the 10/66 protocol to establish the 10/66 and the Diagnostic and Statistical Manual of mental disorders -fourth edition (DSM-IV) diagnosis of dementia. 10/66 and DSM-IV dementia diagnosis as established by the survey questionnaires was validated by comparing against a gold standard of clinical assessment. RESULTS: A total of 2,565 respondents completed the study giving a response rate of 65.6%. The validity of 10/66 dementia was higher (sensitivity = 95.6%, specificity = 81.8%) than that of DSM-IV dementia (sensitivity = 75.6%, specificity = 88.6%) when compared against the clinical gold standard. The study found that the prevalence of 10/66 dementia was 10% in the older adult population while the prevalence of DSM-IV dementia was 4.6%. Older age (75 years and above); no formal education, or completed primary education (versus higher education); homemaker and retired status (versus employed); and a history of stroke were associated with a higher risk of 10/66 dementia. CONCLUSION: The establishment of accurate data on the number of people with dementia is essential in the planning of services and initiatives.
TAY, K. C. P., SEOW, C. C. D., XIAO, C., LEE, H. M. J., CHIU, H. F., & CHAN, S. W.-C. (2016). STRUCTURED INTERVIEWS EXAMINING THE BURDEN, COPING, SELF-EFFICACY, AND QUALITY OF LIFE AMONG FAMILY CAREGIVERS OF PERSONS WITH DEMENTIA IN SINGAPORE. DEMENTIA, 15(2), 204–220. http://doi.org/10.1177/1471301214522047
Dementia is a global health issue and the effects on caregivers are substantial. The study aimed to examine the associations of burden, coping, self-efficacy with quality of life among family caregivers of persons with dementia in Singapore. Structured interviews were conducted in a convenience sample of 84 family caregivers caring and seeking clinical care for the persons with dementia in an outpatient clinic of a public hospital in Singapore. The outcome measures included the Family Burden Interview Schedule, Family Crisis Oriented Personal Evaluation Scale, General Perceived Self-Efficacy Scale, and World Health Organization Quality of Life Scale – Brief Version. In general, significant correlations were observed between the quality of life scores with coping strategy and family burden scores, but not between the coping strategy and family burden scores. Compared to demographic factors such as caregiver age and household income, psychosocial factors including family burden, coping strategies, and self-efficacy demonstrated greater association with quality of life in the participants. However, the dynamics of these associations will change with an increasing population of persons with dementia, decreasing nuclear family size, and predicted changes in family living arrangements for the persons with dementia in future. As such, it necessitates continuous study examining the needs and concerns of family caregivers and the relevance of ongoing interventions specific to caregivers of persons with dementia.
TEO, W. (2015). PMH30 - PRIMARY CARE DEMENTIA CLINIC REDUCES SOCIETAL COST OF DEMENTIA: A COST-UTILITY ANALYSIS. VALUE IN HEALTH, 18(7), A411. http://doi.org/10.1016/j.jval.2015.09.983
TING, C. H., & LIM, W. P. (2016). WEATHERING THE SILVER TSUNAMI: DEMENTIA COMMUNITY SERVICES IN SINGAPORE. EUROPEAN PSYCHIATRY, 33, Supplement, S474. http://doi.org/10.1016/j.eurpsy.2016.01.1730
Introduction: The prevalence of dementia rises with the rapidly increasing elderly population in developed world. In Singapore, 10% of the elderly population is estimated to have dementia. Other than physical and psychological needs, social welfare should also be addressed with the support of specialised geriatric care sources to improve their quality of life. Objective: To study a case of an elderly with dementia, who was identified and managed through a multi-agency approach and to describe different services involved for dementia care. Aim: To highlight the various elderly care organizations available in Singapore to address healthcare and social needs in dementia. Method: Through a case report of an elderly who presented to hospital for medical issues with dementia, the social needs were identified and multiple agencies were involved to provide holistic care in dementia. Result: A 77-year-old gentleman was brought by a community social worker to hospital as he was found ill during home visit. During admission, the concern for poor self-care and cognition decline was raised by his family. Mini-mental state examination was 16/30. He was diagnosed with vascular dementia with clinical and MRI Brain finding. With active multidisciplinary intervention, his medical issues were addressed, and family and social needs were attended by several voluntary welfare organizations. Access to memory clinic service was also arranged for. This intervention also provided opportunity for his long-term care and welfare. Conclusion: Multi-agency approach is crucial in dementia care to identify their unmet needs and plan for long-term care in Singapore.
TUOMOLA, J., SOON, J., FISHER, P., & YAP, P. (2016). LIVED EXPERIENCE OF CAREGIVERS OF PERSONS WITH DEMENTIA AND THE IMPACT ON THEIR SENSE OF SELF: A QUALITATIVE STUDY IN SINGAPORE. JOURNAL OF CROSS-CULTURAL GERONTOLOGY, 31(2), 157–172. http://doi.org/10.1007/s10823-016-9287-z
The prevalence of dementia is increasing, especially in Asia. Caregivers of people with dementia are at greater risk of psychological morbidity; however, most studies on caregiving have been conducted in Western populations. As a caregiver’s experience can be influenced by cultural factors, this needs exploring further. This study explored the lived experience of caregivers of dementia patients in Singapore and the impact of caring on their sense of self. Six Chinese female spousal caregivers were interviewed and their experiences were analyzed using interpretative phenomenological analysis (IPA). Four super-ordinate themes were identified: impact of caregiving, acceptance of destiny, taking control, and view of self. The findings reflected the influence of Confucian values. Clinical implications are discussed, including more culturally sensitive services.
VAINGANKAR, J. A., SUBRAMANIAM, M., PICCO, L., ENG, G. K., SHAFIE, S., SAMBASIVAM, R., … CHONG, S. A. (2013). PERCEIVED UNMET NEEDS OF INFORMAL CAREGIVERS OF PEOPLE WITH DEMENTIA IN SINGAPORE. INTERNATIONAL PSYCHOGERIATRICS, 25(10), 1605–1619. http://doi.org/10.1017/S1041610213001051
ABSTRACT Background: This study aimed to explore the experiences and challenges of informal caregivers in Singapore with the intent of identifying the multi-dimensional unmet needs from their perspective and generating caregivers’ needs checklist based on the findings. Methods: Informal caregivers were relatives of people with dementia and were responsible for organizing care and providing regular physical and/or financial support. Using a qualitative research design, informal caregivers’ experiences were explored. A total of ten focus group discussions and 12 semi-structured interviews were conducted with adult caregivers. Caregivers’ perceived unmet needs were identified using thematic analysis. Findings from the qualitative study were combined with inputs from professionals to create a checklist of caregivers’ needs for dementia. Results: The average age of the participants was 52.9 years; the majority of the participants were of Chinese ethnicity (50%), followed by Indian (23%), Malay (22%), and other (3%) ethnic groups. Informal caregivers perceived four categories of unmet needs: (i) emotional and social support, (ii) information, (iii) financial support, and (iv) accessible and appropriate facilities. Caregivers strongly expressed the need for emotional support to overcome the psychological and physical burden of care. Challenges with obtaining adequate information, access to services, and financial barriers were discussed. Based on these findings and expert panel discussions, a checklist of 26 items representing their unmet needs was designed. Conclusions: Informal caregivers face several challenges while caring for their relative with dementia and hence there is a clear demand to address their unmet needs for information, services, respite, and emotional and financial support.
ABOUT DEMENTIA RESEARCH - WELL-BEING PROGRAMMING FOR PWD IN DAY CARE CENTRES REPORT.PDF. (N.D.). Retrieved from http://www.alz.org.sg/sites/alz.org.sg/files/About%20Dementia%20RESEARCH%20-%20Well-being%20Programming%20for%20PWD%20in%20Day%20Care%20Centres%20Report.pdf
ALOULOU, H., MOKHTARI, M., TIBERGHIEN, T., BISWAS, J., PHUA, C., KENNETH LIN, J. H., & YAP, P. (2013). DEPLOYMENT OF ASSISTIVE LIVING TECHNOLOGY IN A NURSING HOME ENVIRONMENT: METHODS AND LESSONS LEARNED. BMC MEDICAL INFORMATICS AND DECISION MAKING, 13, 42. http://doi.org/10.1186/1472-6947-13-42
With an ever-growing ageing population, dementia is fast becoming the chronic disease of the 21st century. Elderly people affected with dementia progressively lose their autonomy as they encounter problems in their Activities of Daily Living (ADLs). Hence, they need supervision and assistance from their family members or professional caregivers, which can often lead to underestimated psychological and financial stress for all parties. The use of Ambient Assistive Living (AAL) technologies aims to empower people with dementia and relieve the burden of their caregivers.
BARTLETT, R., & O’CONNOR, D. (2007). FROM PERSONHOOD TO CITIZENSHIP: BROADENING THE LENS FOR DEMENTIA PRACTICE AND RESEARCH. JOURNAL OF AGING STUDIES, 21(2), 107–118. http://doi.org/10.1016/j.jaging.2006.09.002
Personhood has provided a lens for conceptualising dementia practice and research for over ten years. It has afforded the rationale and language for improving care and for raising consciousness about the status of people with dementia, as people, intrinsically worthy of respect. However, because personhood is essentially an apolitical concept concerned with psychosocial issues it may be too limiting. Citizenship provides another possible lens. Citizenship is used in cognate disciplines to promote the status of discriminated groups of people still further, to that of a person with power entitled to the same from life as everyone else. However, as citizenship tends to assume the self-cognizance to exercise rights and responsibilities, it may not be as appropriate for people with severe dementia. Both concepts are problematic then, taking too narrow a view of the human experience. For this field to develop over the next ten years it clearly needs a wider lens that is both inclusive of personhood and citizenship, but which also recognizes the complexities of human experience. This article reviews the relevance of personhood and citizenship for dementia practice and research, and argues for a broader lens that incorporates citizenship and sociological ideas about agency and structure.
DAVIS, S., BYERS, S., NAY, R., & KOCH, S. (2009). GUIDING DESIGN OF DEMENTIA FRIENDLY ENVIRONMENTS IN RESIDENTIAL CARE SETTINGS: CONSIDERING THE LIVING EXPERIENCES. DEMENTIA, 8(2), 185–203. http://doi.org/10.1177/1471301209103250
In the past twenty years, the importance of the physical and social environments in supporting the person with dementia has gained a much higher profile in dementia care. Despite efforts to move aged care away from the medical model to a more balanced social model of care, we still struggle with the dominance of an institutional context which impedes individuality and choice. This article argues that the experience of the person with dementia should frame the perspective brought to built design and the philosophy of care — in essence, `looking out from the inside’. Shifting the emphasis from condition to experience encourages the culture change needed to create environments that allow the person with dementia to be an active participant in everyday life rather than a passive recipient of care. Based on the development of a resource for residential and respite facilities in Australia, seven living experiences are identified: the presentation of self-experience, eating experience, personal enjoyment experience, bedroom experience, family and community connections experience, end-of-life experience and the staff experience. Each is discussed to show how consideration of the living experiences provides a way to focus thinking for design of the built environment to practically support the person with dementia, thereby addressing the wider spectrum of issues in creating a dementia friendly physical and social environment from the perspective of the person with dementia.
GENNIP, I. E. VAN, PASMAN, H. R. W., OOSTERVELD-VLUG, M. G., WILLEMS, D. L., & ONWUTEAKA-PHILIPSEN, B. D. (2016). HOW DEMENTIA AFFECTS PERSONAL DIGNITY: A QUALITATIVE STUDY ON THE PERSPECTIVE OF INDIVIDUALS WITH MILD TO MODERATE DEMENTIA. THE JOURNALS OF GERONTOLOGY SERIES B: PSYCHOLOGICAL SCIENCES AND SOCIAL SCIENCES, 71(3), 491–501. http://doi.org/10.1093/geronb/gbu137
Objective: This article examines how dementia affects personal dignity in individuals with mild to moderate dementia from their perspective. Method: In this qualitative cross-sectional study, in-depth interviews were carried out with 14 individuals, aged 50–94, with mild to moderate dementia who lived at home. Verbatim transcripts were analyzed making use of the principles of thematic analysis. Results: Although mild to moderate dementia resulted in a diminished sense of personal dignity, in general participants still felt reasonably dignified. The decline in personal dignity was generally caused by cognitive impairments resulting in diminished autonomy and changes to the individual’s former identity. However, the intensity with which the decline in personal dignity was experienced depended to a large degree on the social context of the individual, with a marked difference between the private sphere of the home and the external, social environment. The study gives recommendations how others can help to sustain personal dignity in people with mild to moderate dementia. Conclusion: Given the considerable impact the social environment has on the personal dignity of people with mild to moderate dementia, it is important in caregiving not to confine attention to health-related or even any individual aspects alone, but also to take interpersonal aspects into consideration.
HIRSCHMAN, K. B., JOYCE, C. M., JAMES, B. D., XIE, S. X., & KARLAWISH, J. H. T. (2005). DO ALZHEIMER’S DISEASE PATIENTS WANT TO PARTICIPATE IN A TREATMENT DECISION, AND WOULD THEIR CAREGIVERS LET THEM? THE GERONTOLOGIST, 45(3), 381–388. http://doi.org/10.1093/geront/45.3.381
Purpose: This study was designed to examine the factors associated with the preferences of Alzheimer’s disease patients to participate in a decision to use an Alzheimer’s disease-slowing medication and how involved their caregivers would let them be in this decision. Design and Methods: Interviews were conducted with 48 patients in the mild-to-moderate stage of Alzheimer’s disease and their caregivers. Results: Ninety-two percent of patients indicated they would participate in an Alzheimer’s disease treatment decision, whereas 71% of caregivers thought the patient would participate. Half of the caregivers who indicated that their relatives would participate had relatives who did not have the capacity to make the decision based on a consensus of three expert psychiatrists. Patients’ insight into their diagnosis and prognosis, and having less cognitive impairment, being a female caregiver, and being a spousal caregiver were all associated with the likelihood that the patient would participate in the treatment decision. Patients talked about wanting to be involved in the process of making a treatment decision, whereas caregivers talked about assessing whether their relative could participate in the process of decision making. Implications: Mild-to-moderate stage Alzheimer’s disease patients want to be involved in making treatment decisions, and caregivers are generally willing to involve them. Caregivers of Alzheimer’s disease patients talk about patient participation in relation to elements of the capacity to make a treatment decision. Clinicians can provide guidance and education to assist caregivers in understanding how to assess their relatives’ abilities to make decisions and navigate the decision-making process.
HOOF, J. V., & KORT, H. S. M. (2009). SUPPORTIVE LIVING ENVIRONMENTS: A FIRST CONCEPT OF A DWELLING DESIGNED FOR OLDER ADULTS WITH DEMENTIA. DEMENTIA, 8(2), 293–316. http://doi.org/10.1177/1471301209103276
The vast majority of older adults want to remain living independently at home, with or without a sufficient amount of professional home care, even when overall health is starting to decline. The ageing of society and the increase in the number of very old elders goes together with an increase in the number of people with dementia. About two thirds of the diagnosed people in the Netherlands live at home. Dementia has severe implications to the quality of daily life, in particular to independent functioning. This sets extra demands to living environments. Older adults with dementia and their partners ask for living environments that support independence, compensate for declining vitality, and lower the burden of family care. For this purpose, a first concept of a design for a dementia dwelling is presented in this paper, which incorporates modifications in terms of architecture, interior design, the indoor environment, and technological solutions. These design features were derived from literature search and focus group sessions. Current design guidelines are frequently based on practical experience only, and therefore, more systematic field research should be carried out to find evidence for the various design modifications. Also, it needs to be studied how the design features of the dementia dwelling can be incorporated into the existing housing stock.
MOKHTARI, M., ALOULOU, H., TIBERGHIEN, T., BISWAS, J., RACOCEANU, D., & YAP, P. (2012). NEW TRENDS TO SUPPORT INDEPENDENCE IN PERSONS WITH MILD DEMENTIA: A MINI-REVIEW. GERONTOLOGY, 58(6), 554–563. http://doi.org/10.1159/000337827
Our research was motivated by the growing aging population worldwide and the need to concentrate research efforts on a specific target group; it focuses on elderly persons with physical and cognitive deficiencies. The primary goal is to enable persons with mild dementia to maximize their physical and mental functions through assistive technologies in order to be able to continue to participate in social networks and lead independent and purposeful lives. Persons with mild dementia usually have problems in performing activities of daily living due to episodic memory decline. These can include simple activities, such as bathing, changing clothes and preparing meals. Through extended field test trials involving end users, we have demonstrated that assistive technology that provides timely prompts, alarms and reminders can enable them to preserve their abilities and improve their quality of life. Understanding the user context, especially when targeting demented individuals, and providing the required personalized assistive services is the objective of our research work. Finding the appropriate user interface to interact with the provided services is often a barrier. Thus, we have adopted the approach of a multimodal interactive system with the living environment including a TV set, iPad-like tablets, sensors/actuators, and wireless speakers connected to a reasoning engine that is able to consider the complexity of the users’ profile defined by his/her cognitive abilities. In this paper we will mainly focus on the interaction level with the system as well as on the validation stages performed to meet the users’ requirements. This is the result of several years’ work since 2006 in the frame of two projects (IST-FP6 COGKNOW European completed project and AMUPADH ongoing project in Singapore).
MOUNTAIN, G. A. (2006). SELF-MANAGEMENT FOR PEOPLE WITH EARLY DEMENTIA AN EXPLORATION OF CONCEPTS AND SUPPORTING EVIDENCE. DEMENTIA, 5(3), 429–446. http://doi.org/10.1177/1471301206067117
This article describes the concept of self-management and how it is being promoted. This is followed by a consideration of why dementia has been largely set aside. Illustrations of how people with early dementia might be enabled to participate are given and the requirements that will help to make this a reality are postulated. These include early disclosure of the diagnosis, support with the consequences of disclosure, a focus upon the needs of the person with dementia, identification of specific interventions that might facilitate self-management, meeting needs for professional education and support and a whole systems approach towards treatment and care. The results of a scoping review of the evidence is given, with an extra factor of meeting needs for lay and patient education being identified in addition to those elements originally postulated. The implications of policy neglect combined with a patchy evidence base and unrecognized service innovations are discussed.
STEEMAN, E., GODDERIS, J., GRYPDONCK, M., BAL, N. D., & CASTERLÉ, B. D. D. (2007). LIVING WITH DEMENTIA FROM THE PERSPECTIVE OF OLDER PEOPLE: IS IT A POSITIVE STORY? AGING & MENTAL HEALTH, 11(2), 119–130. http://doi.org/10.1080/13607860600963364
Dementia, even at an early stage, may pose problems and challenge one’s quality of life. Having accurate knowledge of what one experiences when living with dementia is important for developing proactive care for individuals with dementia and their families. The aim of our Grounded Theory study was to explore what it means for elderly people to live with early-stage dementia. We interviewed 20 elderly people with probable mild dementia and their family members. Living with dementia was often presented as a positive narrative, one that told of only minor problems and which stressed abilities and contentment with life. Being valued, rather than losing one’s cognition or identity was central in their experience. More in-depth analyses of participants’ narratives revealed, however, that they were constantly balancing their feelings of value and worthlessness, struggling to remain someone of value. This struggle was prompted by threats posed by dementia and by the persons’ interactions with others. Superficially, a positive narrative may be understood as a lack of awareness or as denial due to cognitive loss. Our findings suggest, however, that we should look beyond this superficial view and seek to understand the narrative as an expression of one’s attempt to counterbalance devaluation.
THOMPSON, J. P., RILEY, C. M., EBERLEIN, R. L., & MATCHAR, D. B. (2012). FUTURE LIVING ARRANGEMENTS OF SINGAPOREANS WITH AGE-RELATED DEMENTIA. INTERNATIONAL PSYCHOGERIATRICS, 24(10), 1592–1599. http://doi.org/10.1017/S1041610212000282
ABSTRACT Background: With rapid aging, Singapore faces an increasing proportion of the population with age-related dementia. We used system dynamics methodology to estimate the number and proportion of people with mild, moderate, and severe dementia in future years and to examine the impact of changing family composition on their likely living arrangements. Methods: A system dynamics model was constructed to estimate resident population, drawing birth and mortality rates from census data. We simulate future mild, moderate, and severe dementia prevalence matched with estimates of total dementia prevalence for the Asian region that includes Singapore. Then, integrating a submodel in which family size trends were projected based on fertility rates with tendencies for dependent elderly adults with dementia to live with family members, we estimate likely living arrangements of the future population of individuals with dementia. Results: Though lower than other previous estimates, our simulation results indicate an increase in the number and proportion of people in Singapore with severe dementia. This and the concurrent decrease in family size point to an increasing number of individuals with dementia unlikely to live at home. Conclusions: The momenta of demographic and illness trends portend a higher number of individuals with dementia less likely to be cared for at home by family members. Traditions of care for frail elderly found in the diverse cultures of Singapore will be increasingly difficult to sustain, and care options that accommodate these demographic shifts are urgently needed.
TOPO, P. (2009). TECHNOLOGY STUDIES TO MEET THE NEEDS OF PEOPLE WITH DEMENTIA AND THEIR CAREGIVERS A LITERATURE REVIEW. JOURNAL OF APPLIED GERONTOLOGY, 28(1), 5–37. http://doi.org/10.1177/0733464808324019
The aim of this article is to present the findings of a review of studies that focused on technology supporting people with dementia and their caregivers. A literature search was carried out in eight scientific literature databases covering literature published between January 1992 and February 2007. A total of 46 studies providing original data and one review were included in this review. Analyses covered the aims of the studies, the technology used, study design, methods, outcome variables, and results. Most studies were carried out in residential care and focused on the needs of formal caregivers. Only a few studies involved people with dementia actively using the technology. The studies are difficult to compare because of the large variety of aims, technologies, design, and outcome measurements. There is a need for more research in this area, in particular, with people who have a mild stage dementia living in the community.