Background: Existing instruments for caregiver burden assessment are not specific or sensitive to various aspects of caring for patients with Parkinson's disease. A better understanding of burden may enhance patient care and improve health of both patient and caregiver. The goal of this study was to evaluate the validity of the Parkinson's Disease Caregiver Burden (PDCB) questionnaire, a novel instrument designed to appraise more accurately the burden experienced by caregivers in the setting of Parkinson's disease.

Methods: Common sources of distress for caregivers were taken from discussions with Parkinson's disease patients, caregivers, and clinicians, and used as the foundation of the PDCB questionnaire items. Fifty patients and their respective caregivers were recruited from three specialist movement disorder clinics. Caregiver burden in the sample was gauged with the PDCB scale and the Caregiver Burden Inventory (CBI). Item sensitivity and questionnaire validity were assessed.

Results: In this pilot analysis, the PDCB questionnaire was found to be feasible and reliable. Strong correlations were found between the PDCB questionnaire and the CBI. The PDCB questionnaire contained more relevant items for this population compared with the CBI.

Conclusion: Strong initial feasibility, reliability, validity, and sensitivity for the PDCB questionnaire were demonstrated. With further evaluation and development, the PDCB questionnaire may prove to be a valuable supplementary tool to the existing CBI or a standalone instrument for use in the setting of Parkinson's disease.

Background: The validity of self-reported quality-of-life (QoL) assessments of people with dementia (PWD) is a critical issue. We designed this study to determine the non-cognitive factors that are associated with self-reported QoL and PWD QoL as rated by family caregivers.

Methods: Using a cross-sectional study, we assessed QoL of 41 people with mild Alzheimer's disease (AD). The individuals with AD and their family caregivers completed the Quality of Life in Alzheimer's Disease Scale (QoL-AD), the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD), the Mini-Mental State Examination (MMSE), the Clinical Dementia Rating (CDR) scale, the Cornell Scale for Depression in Dementia (CSDD), the Pfeffer Functional Activities Questionnaire (FAQ), and the Zarit Burden Interview (ZBI). Univariate and multivariate regression analyses were conducted to examine the contribution of the various cofactors.

Results: We observed a significant difference (t = 3.292, p < 0.01, d = 0.727) in the QoL measures of PWD after comparing self-reported assessments with the assessments of family caregivers. Linear regression analysis demonstrated that awareness of disease was related to PWD QoL-AD scores. Both the education levels of family caregivers and the depressive symptoms in PWD were related to the family caregivers’ ratings of PWD QoL.

Conclusions: The difference between self-reported QoL and family caregivers’ ratings of QoL in people with mild dementia indicated that cognitive impairment was not the primary factor that accounted for the differences in the QoL assessments. Our findings suggested that non-cognitive factors, such as awareness of disease and depressive symptoms, played an important role in the differences between the self-reported AD QoL ratings and the caregivers’ AD QoL ratings. A major implication is that discrete measures such as cognition or level of function are likely to miss important factors that influence QoL.

Background: The aim was to develop a brief screening battery, Cognitive State Test (COST), for detecting the presence of dementia in both illiterate and literate patients and to assess its validity and reliability.

Methods: COST is a cognitive screening tool that consists of almost all cognitive domains. It takes 5–7 minutes to administer, and has a maximum score of 30. Data were obtained from 114 healthy volunteers and 74 Alzheimer dementia (AD) patients. Subjects’ age divided into two groups: A1: <65 years; and A2: ≥65 years and their education level divided into three groups: E1: illiterate; E2: 1–5 years; and E3: ≥6 years. For assessing concurrent validity, total COST score was compared to the Clinical Dementia Rating (CDR), the Mini Mental State Examination (MMSE), the Montreal Cognitive Assessment (MoCA), and Basic Activities of Daily Living (BADL). Sensitivity and specificity were determined through a discriminant analysis using the Receiver Operating Characteristic (ROC) curves. Internal consistency was measured using Cronbach's coefficient α.

Results: For normal and AD subjects, mean age was 64.9±9.8 years (50 women and 64 men) and 67.2±13.2 years (55 women and 19 men), respectively. Schooling ranged from 0–15 years (mean 5.7±4.2 and 3.3±3.8 years, respectively), and 21 and 37 subjects were illiterate, respectively. The COST significantly and positively correlated with MMSE and MoCA, and significantly and inversely correlated with CDR, the Geriatric Depression Scale (GDS), and BADL. In the E1, E2, and E3 education groups, the optimal cut-off points of COST chosen for diagnosis of AD were 23/24 (sensitivity: 81%, specificity: 99%), 24/25 (sensitivity: 75%, specificity: 86%), and 26/27 (sensitivity: 77%, specificity: 84%), respectively. When illiterate and literate subjects were then pooled, the optimal cut-off score of COST was 24/25, which yielded a sensitivity of 81% and a specificity of 87%. Reliability of the COST was good (0.86).

Conclusion: The COST is a valid and reliable screening battery for detection of dementia both in the illiterate and the literate Alzheimer patients.

Background: While venous thromboembolism (VTE) risk assessment and prophylaxis is well established for medical and surgical in-patients, there is a paucity of evidence, and therefore guidelines, in this area for psychogeriatric in-patients. We wished to determine VTE incidence, risk, and use of prophylaxis, in a psychogeriatric in-patient population.

Methods: Retrospective audit of consecutive psychogeriatric patients aged 65 years and over admitted to Bankstown Hospital over a 3-year period, 2007–2009. Using an adapted VTE risk scoring system, patients were assigned as low, medium, or high VTE risk.

Results: A total of 192 patients were included in the study. Mean age was 79.1 ± 7.0 years. Out of the total, 55.2% of patients had diagnosis of dementia, and 33.3% had depression. Overall, 81.8% (157/192) were assessed as low risk, and 18.2% (35/192) as medium risk. Also, 16.7% (32/192) received VTE prophylaxis.

Four new VTE events occurred in medium-risk group, and one in low-risk group (p = 0.004). Overall VTE incidence was 10.5/10,000 patient-days, but 44.2 per 10,000 in medium-risk group. VTE risk score was predictive of VTE events – IRR 6.02 (95% Confidence Intervals (CI) = 1.76–20.7, p = 0.004) for every one-point increment in risk. Depression was associated with significantly higher VTE occurrence (6.3% in those with diagnosis vs. 0.8% without, p = 0.043).

Conclusion: Using a VTE risk scoring system adapted for psychogeriatric in-patients, those assessed to be at medium risk had a significantly increased rate of VTE. On this basis, we would recommend VTE prophylaxis be prescribed for psychogeriatric in-patients assessed to be at medium and high level of risk.

Background: The role of individual characteristics in incidences of elder abuse has long been highest on research and policy agendas. Now, it is timely to discuss factors that go beyond victim and perpetrator. Environmental factors also play an important role in elder abuse. In this paper, we address the framing of elder abuse as a social and health problem. Attention is paid to the factors that influence societal context and the healthcare system, its organization, structure, and principles.

Methods: Focus groups and in-depth semi-structured interviews were held with different professionals and older people themselves. Qualitative analysis of focus groups and interviews transcripts was performed to analyze how different professional groups and older persons themselves view elder abuse, to determine opinions and attitudes toward elder abuse and the necessary actions that should be taken to prevent or intervene in the problem.

Results: Two main explanatory frameworks emerged in the discourse of older persons and care professionals: social arrangements and healthcare system. The themes within the social arrangements included social taboo, social control and responsibility, and institutional cultures. The fragmentation of care and changes in the financing of healthcare were two aspects distinguished within the framework of the healthcare system.

Conclusion: Two explanatory frameworks showed elder abuse as both a social and health problem. The environmental factors through social arrangements and healthcare system have an influence on framing of abuse. The different ways of framing abuse impact the understanding of abuse, ways of intervention, and prevention measures.

Background: It is of considerable public health importance to prevent or delay the progression of mild cognitive impairment (MCI) to more severely impaired cognitive states. This study examines the risk of progression from mild to severe cognitive impairment in relation to engagement in social activities while mildly impaired and the concurrence of subsequent change in engagement with MCI progression.

Methods: Participants were 816 older adults with cognitively defined MCI (mean age 78.0 (standard deviation or SD = 7.4) years) from the Monongahela–Youghiogheny Healthy Aging Team (MYHAT) Study – a prospective cohort study of MCI in the community. Over three years of follow-up, 78 individuals progressed from MCI to severe cognitive impairment, while 738 did not progress. Risk of progression was estimated using discrete time survival analyses. The main predictors were standardized composite measures of the variety and frequency of engagement in social activities.

Results: Lower risk of progression from mild to severe cognitive impairment was associated with both a greater level of frequency of engagement in social activities while mildly impaired (OR = 0.72, 95% CI: 0.55–0.93, p = 0.01) and also with a slower rate of decline in the variety of activities over time (OR = 0.01, 95% CI: <0.001–0.38, p = 0.02).

Conclusions: Greater engagement in social activities may potentially be beneficial for preventing or delaying further cognitive decline among older adults with MCI. Alternatively, lesser engagement in social activities may be a marker of impending cognitive decline in MCI.

Background: Observational studies find that family carers of people with dementia who use more emotional support and acceptance-based coping, and less dysfunctional coping, are less depressed and anxious. We hypothesized that interventions effective in reducing psychological symptoms would increase emotional support and acceptance-based coping, or decrease dysfunctional coping.

Methods: We systematically reviewed randomized controlled trials published up to July 2011, of interventions for carers of people with dementia measuring coping and psychological morbidity. We rated study validity and reported findings. We conducted fixed-effect meta-analyses for interventions where possible.

Results: Eight of 433 papers identified by the search met inclusion criteria. All measured coping immediately after intervention. Two interventions significantly decreased depressive or anxiety symptoms: the smaller study found no change in dysfunctional coping. Neither measured emotional support and acceptance-based coping. Meta-analysis found that both group coping skills interventions alone (SMD = −0.39, 95% CI = −0.75 to −0.03, p = 0.04) and with behavioral activation (SMD = −0.26, 95% CI = −0.48 to −0.04, p = 0.02) significantly increased dysfunctional coping, while significantly reducing depressive symptoms. Positive coping (a mix of emotional and solution-focused strategies) increased (SMD = 0.28, 95% CI = 0.05–0.51, p = 0.02) with group coping skills interventions and behavioral activation.

Conclusions: Contrary to our hypothesis, dysfunctional coping increased when carer depressive symptoms improved. There was preliminary evidence that emotional support and acceptance-based coping increased, as positive coping increased although solution-focused coping alone did not. More research is needed to elucidate whether successful interventions work through changing coping strategies immediately and in the longer term.

Background: Highly educated participants with normal cognition show lower incidence of Alzheimer's disease (AD) than poorly educated participants, whereas longitudinal studies involving AD have reported that higher education is associated with more rapid cognitive decline. We aimed to evaluate whether highly educated amnestic mild cognitive impairment (aMCI) participants show more rapid cognitive decline than those with lower levels of education.

Methods: A total of 249 aMCI patients enrolled from 31 memory clinics using the standard assessment and diagnostic processes were followed with neuropsychological evaluation (duration 17.2 ± 8.8 months). According to baseline performances on memory tests, participants were divided into early-stage aMCI (−1.5 to −1.0 standard deviation (SD)) and late-stage aMCI (below −1.5 SD) groups. Risk of AD conversion and changes in neuropsychological performances according to the level of education were evaluated.

Results: Sixty-two patients converted to AD over a mean follow-up of 1.43 years. The risk of AD conversion was higher in late-stage aMCI than early-stage aMCI. Cox proportional hazard models showed that aMCI participants, and late-stage aMCI participants in particular, with higher levels of education had a higher risk of AD conversion than those with lower levels of education. Late-stage aMCI participants with higher education showed faster cognitive decline in language, memory, and Clinical Dementia Rating Sum of Boxes (CDR-SOB) scores. On the contrary, early-stage aMCI participants with higher education showed slower cognitive decline in MMSE and CDR-SOB scores.

Conclusions: Our findings suggest that the protective effects of education against cognitive decline remain in early-stage aMCI and disappear in late-stage aMCI.

To further address the potential factors that lead up to elder abuse in domestic settings, this paper proposes a model from a communication approach to explain dyadic influences between the family caregiver and the elderly care receiver that give rise to the abuse. That is, dysfunctional communication between the caregivers and care receivers may, therefore, increase the likelihood of elder abuse. Grounded in Bugental and her colleagues’ work (1993, 1999, 2002) on child abuse, we propose a power-oriented communication model based, in part, on research in the fields of family violence and intergenerational communication to explain the likelihood of occurrence of elder abuse in family caregiving situations. We argue that certain risk factors pertaining to caregivers’ characteristics – those who perceive high stress in caregiving, have mental health issues, have a history of substance abuse, and/or display verbal aggressiveness – may be more likely to attribute considerable power to those elderly under their custodianship. At the same time, such caregivers tend to feel powerless and experience loss of control when interacting with their elderly counterparts. When an elderly care receiver displays noncompliant behaviors, caregivers may be prone to employ abusive behaviors (in our model, it refers to physical abuse, verbal abuse, or communication neglect) to seek such compliance. Consequences of such abuse may result in lower self-esteem or lower confidence in one's ability to manage his/her life. It is suggested that researchers and practitioners investigate both parties’ interactions closely and the role of elderly care receivers in order to detect, intervene, and prevent elder abuse.

Background: Community care workers’ experience of delivering support to people with dementia is less researched than that of residential workers. The purpose of the study is to explore community-based dementia care workers’ perspectives about their roles and the contextual variables that impact upon their work experiences.

Method: A qualitative design was employed. Twenty-five community dementia care workers (average age 53 years, majority female and employed casually) participated in standardized semi-structured interviews about their job roles, training, employer agenda, organizational support, and intention to stay. A deductive approach to Interpretive Phenomenological Analysis was adopted to identify key themes.

Results: Three themes highlighted workers’ experiences. Occupational communion described strong attachment to clients and a desire for greater connection with colleagues. Job demands described the challenges of work, which varied with intensity. Job resources ranged from positive (strong organizational commitment) to negative (poor pay and conditions). Occupational communion was identified as a concept that exists at the interface between social and organization psychology that was perceived to be essential for adaptive coping. Identifying themes informed a conceptual model for designing intervention components aimed at improving workers’ skills, capabilities, and employer supportive functions.

Conclusion: Occupational communion may be particularly relevant for women's caring careers and future research is needed to explore the relevance of this concept for men. To determine reliable change associated with interventions that target occupational communion, further investigation is required in relation to measurement approaches.

Background: Dementia is a major cause of disability among older people and constitutes one of the greatest challenges currently facing families and health and social care services in the developed world. In response to trends in dementia prevalence and the impact the condition has on peoples’ lives, dementia care has been placed high on the public and political agenda in the United Kingdom. However, despite significant public resources being allocated to combat the impact of the disease, recent evidence indicates that numerous challenges in relation to service provision remain. This study aimed to develop a deeper understanding of the lived experience of people with dementia regarding their service-related needs.

Method: The study made use of data gathered through individual semi-structured, narrative interviews conducted with persons with experience of dementia and their unpaid carers.

Results: Although participants were generally satisfied with the services they received, a number of unmet needs related to service provision were identified. In terms of diagnostic procedures the findings of this study indicate the need for early diagnosis delivered through a comprehensive assessment package. The participants also highlighted the need for well-coordinated post-diagnostic support, greater continuity of care concerning the personnel involved, and enhanced access to non-pharmacological interventions to support identity and social engagement.

Conclusion: This study contributes to a better understanding of service-related needs of people with dementia in relation to diagnostic procedures and post-diagnostic support.