Implications for policy makers, health care providers, and caregivers highlight the need to change the ways in which dementia is perceived. The pursuit of positive attitudes will do much to change social perceptions and enable people with dementia to live with a sense of well-being.

Dementia is a critical social issue that contributes to, and is exacerbated by, occupational deprivation. This article reports the findings of an action research project undertaken to explore the daily activities of people who live with dementia in the community. Data were gathered by interviews, observations, and focus groups in community settings. The process of data gathering and analysis were reciprocally integrated. The participants, 11 people with mild to moderate dementia and their primary caregiver, prioritized the need to change the way dementia is perceived. Their rationale included other people's understanding of dementia and the social isolation they experience, resulting from a decline in opportunities to engage in daily activities. Occupational therapists have a significant role to play, encouraging and supporting people who live with dementia to maintain health and well-being by participating in occupations. Overcoming systemic issues that create barriers to occupation is vital. [OTJR: Occupation, Participation and Health 2013;33(3):168-176.].

Objective: Paediatric research on 'everyday' pain experiences is sparse, stemming from a lack of appropriate methodologies. We explored the feasibility of two methodologies for conducting naturalistic observations of 'everyday' pains within family's homes, against an established methodology for day-care observations. Design: Within family homes, video-cameras recorded a typical morning or afternoon (maximum three hours), either with, or without researcher presence. To compare feasibility, children in day-care were observed by researchers for three hours without video-recording.Outcome measures: logistics of observation, child pain behaviours, caregiver responses to child pain.Results: Thirteen children (Mage=45.4 months) were recorded at home, experiencing 14 pain events. Researcher presence increased child distress intensity, but reduced the number of pain events compared to sessions without a researcher. Thirty-two children (Mage=48.4 months) were observed in day-care, experiencing 44 pain events. Children experiencing pain events in day-care exhibited decreased distress and lower personal control than those observed at home. Across all conditions, caregivers engaged mostly in physical comfort. Researcher estimates of child pain were highest if scored while present in the home. Conclusions:Observing everyday pain events within the child's natural environment is feasible and may provide insight into the social context of childhood pain experiences.

Background 'Slaintecare' aims to address complex patient care needs in an integrated fashion with an emphasis on patientcentred, patient-empowered community care.Currently there is a lack of knowledge of the impact of rare disease management in primary care and of the information tools required by general practitioners to deliver integrated care for rare disease patients. Aims To complete a pilot survey to estimate the general practice clinical workload attributable to selected rare diseases and assess the use of relevant information sources. Methods A retrospective cross-sectional survey was carried out of general practice consultations (2013-2017) for patients with 22 commonly recognised rare diseases. Results Around 31 general practitioners from 10 Irish practices completed information on 171 patients with rare diseases over 3707 consultations. General practice-specific coding systems were inadequate for rare disease patient identification. Over 139 (81.3%) patients were adult, and 32 (18.7%) were children. Management of care was hospital and not primary care based in 63%. Those eligible for state-reimbursed care had a significantly higher median number of consultations (23 consultations, IQR = 13-37, or 5.8 consultations/year) than those who paid privately (10 consultations, IQR = 4-19, or 2.5 consultations/year) (p < 0.005).General practitioners had access to public information resources on rare diseases but few had knowledge of (35.5%), or had ever used (12.9%) Orphanet, the international rare disease information portal. Conclusions Both specific rare disease-specific coding and use of the relevant rare disease information sources are lacking in general practice in Ireland.

New knowledge underpins calls for change in approaches to the care of people with dementia. Person-centred care is considered essential, whereas purpose-built facilities and environmental design are reported to enhance safety and to have a positive effect on behaviour. Research findings have highlighted the inappropriate use of antipsychotic drugs and there is debate about their value in 'managing' symptoms. This paper presents the combination of approaches used to enable residents of two secure dementia units to live life within their ability and without antipsychotic drugs. Essential to the success of the change process was staff education, knowledge of the person, a varied leisure activity programme and a supportive environment. Evidence of the positive difference these strategies made includes statistics that show a decline in falls and behavioural issues, and feedback from family members. In light of the evidence, this article posits that it is ethically wrong to give people with dementia antipsychotic medications because their behaviour is deemed to be unacceptable, when there are other viable options.

Where do children learn about pain? The role of caregiver responses to pre-schoolers' pain experience within natural settings

Background: Rare diseases are individually rare, but collectively these conditions are common. Research on rare diseases are currently focused on disease-specific needs rather than a life-course perspective. The Rare Disease Research Partnership (RAinDRoP) was established in 2018 to bring together a wide variety of diverse voices in the rare disease community in Ireland and form a research partnership. Methods: A participatory multiple phase approach was used to identify research priorities for rare diseases. The research process involved three main phases: Phase I, Public Consultation Survey(PCS); Phase II, Research Prioritisation Workshop (RPW); Phase III, Public Prioritisation Ranking Survey (PRS). The time frame for the entire study was from November 2018 to June 2019. Results: In total, 240 individuals completed the phase I, of which only 96 survey participants provided information on their background,  32% (n=31) self-identified as a person living with a rare disease(s). One thousand and fifteen statements were collected, which reflected issues and shared challenges in rare diseases. MSExcel was used to gain frequencies and percentages. Phase II was focused on three main themes (1) Route to Diagnosis (2) Living with Rare Disease (3) Integrated and Palliative Care. 42 participants engaged at each workshop. Seventy-five individuals completed the phase III prioritisation ranking survey and ranked the top 15 research priorities.  The top five priorities were (1)Support at the time of diagnosis, (2) Diagnostic test for rare diseases (3)Education and training (4) Patient voice (5) Data sharing and integration of services for rare diseases. Conclusions: The research priorities identified here for rare diseases were developed jointly in collaboration with patients, families, healthcare professionals and policymakers. So, we encourage researchers, funding bodies and other stakeholders to use this priority list as a guiding document for future research work to improve the health and lives of people living with rare diseases.

Action research methods were underpinned by critical hermeneutic philosophy to uncover and interpret the support needs of people living with dementia in New Zealand. This involved 11 people with mild to moderate dementia and their primary caregiver in a collaborative process with the researcher. Data collection and analysis were reciprocally integrated, and the participants engaged in the production of knowledge. Coded data generated categories, the adequacy of which was judged by participants to clarify emerging understandings. The participants concluded that the historically rooted understandings of dementia in New Zealand needed to change. Dynamic involvement by the researcher at political, professional and community levels was informed by Kö gler's (1999) version of critical hermeneutics. The actions evolving from the study contributed to significant changes that are occurring in New Zealand's health care system with regards to people with dementia. These outcomes highlight the value of engaging with critical hermeneutic philosophy.