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Background: Alzheimer's disease is one of a variety of progressive and ultimately fatal neurodegenerative diseases that are characterized by a number of nervous and mental symptoms and behavior disorders. These problems are likely to cause burden and strain on caregivers. In this study, we demonstrated the level and relationship of burden and strain among caregivers of dementia patients in China., Methods: A total of 212 caregivers of family members with dementia responded to the survey. A 22-item of the Zarit Burden Interview and a 13-item Caregiver Strain Index (CSI) were used., Results: The results showed that women comprised 88.2% of caregivers, and 58.5% of caregivers reported a level of medium burden. Over one-half of the caregivers reported a level of high strain, with the low income group being more likely to have high levels of burden and strain., Conclusion: Chinese familial caregivers of patients with dementia experience a moderate level of burden and a high level of strain. The main strain factors that affected the burden were changes in personal plans, time demands, and emotional adjustment.

Background: Physical activity has been cited as a potential symptomatic treatment option for people living with dementia. At present, much of the research concerning physical activity and dementia considers older adults, and there are several review articles summarising the evidence in this area. Less is known about physical activity for younger people with dementia, despite the marked differences in needs and preferences between the two groups. The aim of this scoping review is to systematically explore and critically appraise the current state of the evidence regarding physical activity for people with young-onset dementia and carers., Methods: Several electronic databases (i.e. MEDLINE, SPORTDiscus, CINAHL, Cochrane Library, PsycINFO, Applied Social Sciences Index & Abstracts (ASSIA) and Scopus), grey literature (i.e. NICE Evidence Search (UK) and targeted international organisations e.g. Alzheimer's Society (UK), Age UK, Young Dementia UK, Alzheimer's Association (USA), Dementia Australia) and trial registries (i.e. UK Clinical Trials Gateway, International Clinical Trials Registry Platform and EU Clinical Trials Register) will be searched for published and unpublished evidence regarding physical activity for people with young-onset dementia and carers. Studies included in the review will be subjected to a narrative synthesis to explore similarities and differences, both within and between studies, to identify patterns and themes and to postulate explanations for research findings (e.g. how and why certain interventions or programmes have worked (or not); factors that might have influenced the findings )., Discussion: This will be the first review to systematically explore and critically appraise the current state of the evidence regarding physical activity for people with young-onset dementia and carers. It is hoped that findings from this review will be used to inform the development of future physical activity interventions, to serve as a basis for consultation with key stakeholders and to identify appropriate outcome measures relevant to people with young-onset dementia and carers., Systematic Review Registration: At present, scoping reviews are not eligible for registration on the international prospective register of systematic reviews (i.e. PROSPERO).

Background: This paper focuses on communication between hospital staff and family carers of patients dying on acute hospital wards, with an emphasis on the family carers' perspective. The age at which people in the UK die is increasing and many continue to die in the acute hospital setting. Concerns have been expressed about poor quality end of life care in hospitals, in particular regarding communication between staff and relatives. This research aimed to understand the factors and processes which affect the quality of care provided to frail older people who are dying in hospital and their family carers., Methods: The study used mixed qualitative methods, involving non-participant observation, semi-structured interviews and a review of case notes. Four acute wards in an English University teaching hospital formed the setting: an admissions unit, two health care of older people wards and a specialist medical and mental health unit for older people. Thirty-two members of staff took part in interviews, five members of the palliative care team participated in a focus group and 13 bereaved family carers were interviewed. In all, 245 hours of observation were carried out including all days of the week and all hours of the day. Forty-two individual patient cases were constructed where the patient had died on the wards during the course of the study. Thirty three cases included direct observations of patient care. Interviews were completed with 12 bereaved family carers of ten patient cases., Results: Carers' experience of the end of life care of their relative was enhanced when mutual understanding was achieved with healthcare professionals. However, some carers reported communication to be ineffective. They felt unsure about what was happening with their relative and were distressed by the experience of their relative's end of life care., Conclusions: Establishing a concordant relationship, based on negotiated understanding of shared perspectives, can help to improve communication between healthcare professionals and family carers of their patients.

The current article reports the consensus recommendations from individuals living with dementia and their care partners on priorities for public policy and research funding, which were found using a nationwide, Delphi study. A modified snowball sample was used. Listservs, personal contacts, and advocacy groups were asked to distribute the survey. Paper versions were provided upon request. In Rounds 1 and 2 of the study, 388 and 301 responses, respectively, were received. Borda counts produced a ranked order consensus of priorities. Research ranked third, after the need for caregiver support and resources for the provision of long-term care. Education and training in person-centered practices for all care partners was also a high priority. Responses indicated that research funding should be expanded beyond its current emphasis on cure. Policymakers should reconsider the current priorities of the National Alzheimer's Project Act to better address the long-term needs of individuals living with dementia and their care partners., (Copyright 2015, SLACK Incorporated.)

Aims: To explore the experiences of family carers of people with cognitive impairment during admission to hospital., Background: Providing appropriate care in acute hospitals for people with co-morbid cognitive impairment, especially dementia or delirium or both, is challenging to healthcare professionals. One key element is close working with family members., Design: Qualitative interview study., Methods: Semi-structured interviews with family carers of 34 older people who had been admitted to a UK general hospital and had co-morbid cognitive impairment. Interviews conducted in 2009 and 2010. Analysis was undertaken using Strauss and Corbin's framework., Findings: The findings elaborate a core problem, 'disruption from normal routine' and a core process, 'gaining or giving a sense of control to cope with disruption'. Family carers responded to disruption proactively by trying to make sense of the situation and attempting to gain control for themselves or the patient. They tried to stay informed, communicate with staff about the patient and plan for the future. The interaction of the core problem and the core process resulted in outcomes where family members either valued the support of hospital staff and services or were highly critical of the care provided., Conclusion: Family carers are not passive in the face of the disruption of hospitalization and respond both by trying to involve themselves in the care and support of their relative and by trying to work in partnership with members of staff. Nurses need to foster this relationship conscientiously., (© 2013 John Wiley & Sons Ltd.)

This article discusses a pilot study testing a videophone intervention enabling hospice patients and caregivers to remotely participate in interdisciplinary team meetings, with the goal of improving pain management. The aim of this study was to test potential outcome measures and combine the data with qualitative observations to assess the overall feasibility and promise of the intervention. The outcomes evaluated included hospice patient quality of life, caregiver perceptions of pain medications, caregiver quality of life, and caregiver anxiety related to team participation. The pilot study showed that caregiver participation in the care planning process is feasible and may change caregiver perceptions of pain medication, potentially improving pain management for hospice patients.

This study used participant feedback to qualitatively evaluate an intervention (Assessing Caregivers for Team Intervention through Videophone Encounters [ACTIVE]) that used videophone technology to include patients and/or their family caregivers in hospice interdisciplinary team meetings. Data were generated during individual interviews with hospice staff members and family caregivers who participated in ACTIVE intervention. Modified grounded theory procedures served as the primary analysis strategy. Results indicated that ACTIVE intervention enhanced team functioning in terms of context, structure, processes and outcomes. Participants discussed challenges and offered corresponding recommendations to make the intervention more efficient and effective. Data supported the ACTIVE intervention as a way for hospice providers to more fully realise their goal of maximum patient and family participation in care planning.

As patients are cared for in their homes by family caregivers, several challenges arise in effective pain and symptom management. Despite hospice's reputation as the gold standard for terminal care, there is still a need to improve pain management practices, including challenges that caregivers face, related to pain assessment, reluctance and fear of administering medication, noncompliance with pain medicine regimens, and hesitance to report pain. The hospice philosophy of care promotes service for both patients and their family by an interdisciplinary team, and total pain management is a goal of this care. The aim of this control phase of a larger National Cancer Institute-funded mixed methods study was to understand the current practice of hospice assessment and collaboration on informal caregiver issues related to pain management. This study of 30 hospice caregiver--patient dyads from one rural hospice found that 87% of caregivers indicated concern with at least one question on the Caregiver Pain Medicine Questionnaire. Interdisciplinary team discussions for 23 of the dyads were recorded over nine months for a total of 86 sessions. Although caregiver concerns were identified with the Caregiver Pain Medicine Questionnaire by the research team, there was only one discussion of caregiver pain-related concerns during the hospice team meeting. This despite the finding that 38% of the time involved in a patient discussion is spent on pain-related talk. These findings indicate an opportunity for improvement by hospice teams through focusing on caregiver assessment and intervention.

This project reports on the experience of two hospice caregivers using videophone technology to enhance communication with their care providers. The data show the overall satisfaction and technical feasibility with videophone technology in home hospice. The case studies have great implication for future research because they reveal many unexpected issues relevant for future large-scale interventions.

Five interesting findings emerged from this study: Although study results demonstrate support for Porter's Discrepancy Theory, the most compelling outcome is the finding that family care perceptions may be the best predictor of family care satisfaction. Family members' age may be a predictor of family care satisfaction. Family functioning may be a useful clinical indicator to identify families who are less satisfied with care and in greater need of support. The length of time that clients receive the care service may alter family care satisfaction. Differences in findings reported in this study compared with Canadian results point to the need for cross-cultural research in this area. This research is the first Australian study to test discrepancy theory as a framework for understanding family care satisfaction in a home hospice context. Results from this study may assist health care providers to more sensitively address the care perceptions of families in this care setting and extend theory development research that is needed to guide palliative care practice with families.