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Dementia is a complex condition with wide ranging consequences for the person, the family and the supporting health and social care system. The majority of older people with dementia live [...]

This article investigates the potentially competitive relationship between paid work and parent care provided by daughters and daughters-in-law. In line with the scarcity hypothesis of role theory, four subhypotheses were formulated and tested empirically. In a population-based probability sample of middle-aged women (n = 581), only partial empirical support was found for the scarcity or role conflict hypothesis. It appeared that employment significantly reduces the chances of becoming a caregiver. However, parent care and employment are not conflicting in time as the amount of care provided to parents was not affected by out-of-home employment. Parent care has only a small impact on work decisions, and employed caregivers do not experience more caregiver role strain. It was hypothesized that employed women not yet providing care anticipate a role conflict when a parent becomes frail and needs help. Consequently, a self-selection process takes place whereby the nearest living daughter with the least competing demands is most likely to accept the caregiver role. Once the caregiver role is accepted, both role strain and the time spent on parent care are determined by factors other than employment status or work hours.

In this study a path analytic approach was used to investigate predictors of the sense of competence in primary caregivers of demented persons. Data were gathered from 141 pairs of demented persons living in the community and their informal primary caregivers. Analysis of the information reported by the primary caregivers indicated that sense of competence and its component domains were affected above all by behavioural problems of the demented person and degree of neuroticism of the primary caregiver. No significant influence was found on the sense of competence of formal support of home helps and district nurses. The results suggested that the amount of support the demented person received from other social network members only had a limited influence on the domains of sense of competence. Key words - dementia, burden, sense of competence, social support, behavioural problems

Background Systematic pain registration and assessment with a visual analog scale ( VAS) or numeric rating scale ( NRS) at each visit are key recommendations in one of the most recent guidelines on cancer pain management. It is unclear whether this recommendation is applied. Objectives The aim was to explore registration of pain in medical records of patients visiting the medical oncology outpatient clinic. Methods In a multicenter study in six Dutch hospitals, data were extracted from medical records of 380 outpatients with cancer. Data of the first three visits at the outpatient clinic were studied. Descriptive statistics were conducted. Results In 23% of all 987 visits at the outpatient clinic, pain or absence of pain was registered, and in an additional 15%, a nonspecific symptom description was given. Regarding all other visits, (62%) pain or absence of pain was not documented at all. Pain measurement using a VAS or NRS was documented in only one visit. Pain was more often registered in medical records of patients with metastasis, as well as in those of patients with urogenital tumors. Conclusion Pain in medical oncology outpatients is not systematically registered in their medical records. With one exception, pain was not registered with a VAS or NRS. Yet, registration and assessment of pain to monitor pain are essential to evaluate and adapt pain treatment over time. Pain registration has not improved since 2001 and therefore implementing the recommendations regarding systematic monitoring of pain is needed. [ABSTRACT FROM AUTHOR]

Background:Little is known about care needs in young-onset dementia (YOD) patients, even though this information is essential for service provision and future care planning.We explored: (1) care needs of people with YOD, (2) the level of agreement within patient-caregiver dyads on care needs, and (3) the longitudinal relationship between unmet needs and neuropsychiatric symptoms.Methods:A community-based prospective study of 215 YOD patients-caregiver dyads. Care needs were assessed with the Camberwell Assessment of Need for the Elderly. The level of agreement between patient and caregivers’ report on care needs was calculated using κ coefficients. The relationship between unmet needs and neuropsychiatric symptoms over time, assessed with the Neuropsychiatric Inventory, was explored using linear mixed models.Results:Patients and caregivers generally agreed on the areas in which needs occurred. Only modest agreement existed within patient-caregiver dyads regarding whether needs could be met. Patients experienced high levels of unmet needs in areas such as daytime activities, social company, intimate relationships, and information, leading to an increase in neuropsychiatric symptoms.Conclusions:Our findings indicate that in YOD, there are specific areas of life in which unmet needs are more likely to occur. The high proportions of unmet needs and their relationship with neuropsychiatric symptoms warrant interventions that target neuropsychiatric symptoms as well as the prevention of unmet needs. This underlines the importance of the periodic investigation of care needs, in which patient and caregiver perspectives are considered complementary. [ABSTRACT FROM AUTHOR]

Background:Apathy is common in nursing home (NH) residents and it overlaps with depression. This study examines the effects of a multidisciplinary depression program on apathy and depressive motivational and mood symptoms.Methods:Secondary analyses of a stepped-wedge cluster-randomized controlled trial were conducted with six measurements. Sixteen dementia NH units and 17 somatic units were enrolled. In the intervention condition, a program containing depression assessment procedures and multidisciplinary treatment (activating strategies, psychotherapy, and medication) was introduced. Usual care was provided in the control condition. Outcomes were assessed using the 10-item Apathy Evaluation Scale and the Cornell Scale for Depression in Dementia.Results:Intention-to-treat analyses showed that the whole depression management program reduced apathy in dementia units (p < 0.001; Cohen's d, −0.35), and depressive motivational symptoms in somatic units (p = 0.008; Cohen's d, −0.40). Depressive mood symptoms were not affected in both unit types. The effect on apathy in dementia units was mainly attributed to activating strategies (p < 0.001; Cohen's d, −0.73). The effect on motivational symptoms in somatic units was mainly attributed to psychotherapy (p = 0.002; Cohen's d, −0.80). Apathy worsening was associated with pharmacological depression treatment in both unit types (p = 0.009; Cohen's d, 0.35).Conclusions:Depression management may affect apathy and depressive symptoms differently, which underpins the position of apathy as a distinct syndrome. NH professionals can effectively use activating strategies in dementia units, and psychotherapy in somatic units. More research is needed on treating depressive mood symptoms, and on effects of antidepressants in NHs. [ABSTRACT FROM PUBLISHER]

Background/Aims: Knowledge about neuropsychiatric symptoms in young-onset Alzheimer's disease (YO-AD) is scarce, but essential to establish a prognosis and plan care for YO-AD patients. The aim of this study is to assess frequency parameters of neuropsychiatric symptoms in YO-AD over 2 years and investigate whether there are differences compared with late-onset Alzheimer's disease (LO-AD). Methods: 98 YO-AD and 123 LO-AD patients and caregivers from two prospective cohort studies were included and assessed every 6 months for 2 years, using the Neuropsychiatric Inventory to evaluate neuropsychiatric symptoms. Results: Over the course of 2 years, the incidence, prevalence and persistence of neuropsychiatric symptoms were in general lower in YO-AD than in LO-AD, specifically for delusions, agitation, depression, anxiety, apathy, irritability and aberrant motor behavior. Frequency of individual symptoms showed large variability in both groups. Within the group of YO-AD patients, apathy was the most prevalent symptom. Conclusion: Neuropsychiatric symptoms, notably apathy, should be paid appropriate attention to in the diagnosis and treatment of YO-AD patients. Further research is needed to gain insight into the mechanisms underlying the differences in neuropsychiatric symptoms between YO-AD and LO-AD. Copyright © 2012 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Background: Patients with mild cognitive impairment (MCI) have to deal with an uncertain prognosis and also face a multitude of memory-related problems and psychosocial consequences. A newly developed group programme proved to be feasible, however, it needed confirmation by a controlled study. Aim: This controlled study evaluates this group therapy for MCI patients aimed to help them accept and manage the memory problems and the psychosocial consequences. The programme combines elements from psychoeducation, cognitive rehabilitation and cognitive-behavioural therapy. Patients and Methods: Ninety-three MCI patients received treatment, with 30 patients being first assigned to a waiting list, thus serving as their own control group. Pre- and post-treatment acceptance and helplessness were assessed using subscales of the Illness Cognition Questionnaire, while distress and general well-being were gauged with the Geriatric Depression Scale and subscales of the RAND-36. Results: Linear mixed model analyses showed that, relative to the controls, acceptance had increased more in the intervention group compared to the waiting-list period (p = 0.034). Distress and general well-being showed no changes. Treatment responders demonstrating a clinically significant effect on acceptance and two of three secondary outcome measures had higher baseline levels of helplessness and fewer self-reported memory complaints in daily life than patients who did not improve. Conclusion: The intervention helped the patients deal better with their uncertain future in that they were overall better able to accept their condition, with especially the female patients showing a decrease in helplessness cognitions, although the effects were relatively small. Copyright © 2010 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Abstract: Objective: In this study among patients with cancer in the palliative phase, we analysed whether assessing the symptom, which is causing the most trouble in the patient''s every day life (‘most troublesome’ symptom) had added value apart from the presence and severity of symptoms, which are most commonly assessed in clinical practice. Methods: Patients with cancer (lung, gastro-intestinal, breast cancer) in the palliative phase from two non-academic hospitals were included in the study. Using the Symptom Monitor tool, 10 physical symptoms were assessed with regard to presence and severity. The Symptom Monitor has an extra added item indicating as the ‘most troublesome’ symptom. This item was monitored to determine whether it had added value apart from the presence of symptoms and ‘most severe’ symptom. The severity score on the indicated ‘most troublesome’ symptom was subtracted from the severity score of the ‘most severe’ symptom. The generated delta score of 0 indicated no added value, whereas a score of one or more indicated that the ‘most troublesome’ symptom would have been missed if not specifically asked for by the physician, because its severity was lower that the ‘most severe’ symptom. Results: One hundred and forty-six patients reported 590 symptoms to be present. In total, 227 symptoms were reported as ‘most severe’ symptom (n =138 patients). Among these, fatigue (n =52) and pain (n =24) were reported most frequently as ‘most severe’ symptom. In total, 134 patients indicated a symptom as ‘most troublesome’. Fatigue (n =33; 25%) and pain (n =22; 16%) were also indicated by most of these patients as the ‘most troublesome’ symptom. One hundred and fifty-two comparisons could be made between the ‘most severe’ and the ‘most troublesome’ symptom. In 102 (67%) of the comparisons assessing the ‘most troublesome’ symptom had no added value: the score for ‘most severe’ symptom did not differ from the score for the ‘most troublesome’ symptom revealing a delta score of 0. In 23 times (15%) of the 152 comparisons made, the delta score was 1 and in 27 (18%) of the comparisons the delta score was 2 or more indicating that assessing the ‘most troublesome’ symptom substantially had added value. Conclusion: In patients in the palliative phase of their disease, extra attention for the ‘most troublesome’ symptom is needed. In our study, in almost 1/3 of the cases, this symptom would have been missed the physicians attention if not specifically asked for. Practice implications: We recommend not only to assess the presence and severity of symptoms, but furthermore to assess the patient''s ‘most troublesome’ symptom in addition. [Copyright &y& Elsevier]

Abstract: This study aims to determine the extent and nature of problems in palliative care that are newly identified in the consultation process and the factors influencing their identification. The consultation process includes clarification of problems mentioned by professionals requesting advice. Data are derived from the standard registration forms of Palliative Care Consultation teams. Multilevel logistic regression analysis was carried out with newly identified problem as dependent variable. Fifty seven percent of problems (n =7854) were newly identified. Most newly identified problems were related to physical and pharmacological problems. If psychosocial/spiritual problems were identified, this occurred in most cases through clarification (70%). Newly identified problems were more likely to be identified in the domain of spiritual and psychosocial problems, in bedside consultations, in requests from clinical physicians, and for patients accommodated in a hospice or hospital. Explicit clarification of problems facilitates the identification and addressing of a more comprehensive and specific scope of problems. [Copyright &y& Elsevier]

Abstract: No instrument to assess autonomy problems in palliative care is currently available. The purpose of this study was to develop a comprehensive and concise questionnaire to measure autonomy problems in palliative cancer patients and to study its validity and reliability. We systematically developed a questionnaire through: a) a literature review of the concepts and elements of autonomy; b) qualitative analysis of interviews with patients and professional carers; c) the construction of questionnaires; and d) testing validity and reliability. The basic conceptual elements were: dependency, losing control, and limitation of activities. Patients with disseminated cancer in the palliative stage of the disease (n = 64) participated in the study. A 9-item Patient Autonomy Questionnaire (PAQ) was developed (Cronbach''s alpha 0.86), followed by a concise 4-item version (PAQs) (Cronbach''s alpha 0.71). Autonomy problems were more prevalent than pain problems. The development of the PAQ may help draw attention to autonomy problems. [Copyright &y& Elsevier]

Background: General practitioners (GPs) play a crucial part in palliative care. The quality of care can be improved by investigating and addressing barriers perceived by GPs in daily practice. The aim of this study was to investigate GPs' task perception and barriers involved in palliative care. Methods: Qualitative focus group study. We gathered together a group of GPs representing a broad range of experience in palliative care. Content analysis was performed to derive a comprehensive view of tasks and barriers in daily palliative care. Results: GPs described their palliative care tasks as satisfactory and varied, but burdensome. Palliative care tasks included somatic and psychosocial care. Opinions differed with respect to whether the coordination of care belonged to the primary GP tasks. Barriers were classified according to three levels: (1) personal: barriers related to knowledge, skills, emotions; (2) relational: barriers concerning communication and collaboration; (3) organizational: barriers related to the organization of care and compartmentalization in healthcare. Conclusions: This study revealed a complex web of tasks and barriers. It may be possible to trace back a problem (lack of knowledge, for example) on the personal level to an isolated knowledge gap, but the problem may well have originated from communication or compartmentalization problems. To maintain GPs' feeling of being at ease with palliative care requires helping them acquire the appropriate balance between technical and organizational interventions and a compassionate orientation to their terminally ill patients. [ABSTRACT FROM AUTHOR]

Abstract: Objective: To gain insight into the experiences of a palliative care patient and her husband who were living on borrowed time. Methods: A qualitative single case design was used. Systematic content analysis of the interview data, obtained in an in-depth semi-structured interview, from the husband and wife was conducted to extract themes relating to living on borrowed time. Results: Three themes were identified: shifts in the interpretation of physical signs and symptoms, altered view of the future and altered choices and priorities. Conclusion: The identified themes lead to a better understanding of the phenomenon of living on borrowed time. Yet, refinement of, and variation within the themes still need to be studied in order to get more grips on the themes and to be better able to help patients to integrate the ‘new reality’. Practice implications: Our findings can be used to support professionals in the practical application of care when their patients need to integrate the ‘new reality’ and seek new equilibrium, e.g. converted into a conversational guide, or used for educational purposes. [Copyright &y& Elsevier]

Palliative care in The Netherlands is mainly provided by generalist professionals who are part of the regular health care system. In order to provide good quality palliative care, they need options for training and consultation. Therefore, Palliative Care Consultation (PCC) teams were established, which inform, support, and advise professional caregivers involved with patients in palliative care without taking over responsibility. This study is the first nationwide study on PCC teams. Investigated was the nature and effect of consultations by registration and evaluation of consultations given by 19 PCC teams during a one-year period. Sixty-one percent of the requesting caregivers were primary care professionals and the problems discussed covered the entire field of palliative care, although physical problems played a dominant role. Although the patient was often not seen by the consultant, the consultant appeared to be able to identify more problems than initially discussed by the requesting professional. The types of problems discussed were hardly related to patient characteristics but more related to the discipline of the professional caregiver. According to the requesting professionals, consultation was helpful and contributed to improving the quality of palliative care. [Copyright &y& Elsevier]