Patient ‘engagement’ or ‘involvement’ in health research broadly refers to including people with lived experience (i.e. individuals with personal experience of a health issue and their friends, family and caregivers or carers) in the research process. Although previous reviews have systematically summarized approaches to patient engagement in research, it is unclear whether and how engagement activities have been implemented or adapted for research related to dementia. We conducted a scoping review to describe the extent and nature of patient engagement approaches that have been used to involve persons with dementia and their care partners in research. We then summarized the reported barriers, enablers, and impacts of this engagement. Fifty-four research articles were included in the review and almost all were published after 2010. Persons with dementia and their care partners have been engaged in diverse phases of the research process. The majority of engagement involved both persons with dementia and care partners. Barriers and enablers to engagement included those identified for general patient engagement in research, but some more specific to engaging persons with dementia and their care partners were also reported. Very few studies assessed the impact of patient engagement. While the arguments for patient engagement in research are compelling, research to demonstrate the impact – on the research process and outcomes as well as on persons with dementia, care partners, researchers, research institutions and society – is still needed.

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Background/Aims: Many variables influence the quality of life in older adults with dementia. We aim to quantify how the relationship between pain and quality of life in nursing home residents with severe dementia can be explained by neuropsychiatric symptoms, depressive symptoms, and activities of daily living. Methods: This article presents cross-sectional baseline data from a cluster randomised controlled trial. Results: The total and direct effects of pain on quality of life were statistically significant. Both neuropsychiatric and depressive symptoms partially mediated the relationship between pain and quality of life. Activities of daily living acted as a mediator only when modelled together with depressive symptoms. Conclusion: Pain, neuropsychiatric symptoms, and depressive symptoms appear to be important factors that influence the quality of life for nursing home residents with severe dementia. Therefore, multidimensional interventions may be beneficial for maintaining or improving quality of life in this population.

Background: Numerous forces drive the evolution and need for transformation of long-term care services. During the previous decade, primary health care has assumed increased responsibility for developing and providing care services, but there is still limited knowledge about how European care service systems are evolving to address new tasks and patients. Based on data from Norwegian municipalities, this study aims to (1) describe the availability of specialised services in Norwegian nursing homes and home care services and (2) analyse whether structural factors, like population size and/or centrality, are associated with the availability of specialised services in nursing homes and home care. Methods: This is a cross-sectional study of survey data. An online survey was designed specifically for this study. Its questions were developed from a comprehensive review of the literature and in partnership with a user panel. One representative from all of Norway's 422 municipalities were invited to answer the survey from February to April 2019. In total, 277 municipalities completed the survey (response rate 66%). Chi-square analysis and Fisher's exact test were used to test the associations between different categorical variables. Results: Specialised care services were highly prevalent. For example, there were nursing home units specialising in dementia care (89%) and rehabilitation (81%) and home care teams for dementia care (79%) and reablement (76%). Approximately two-thirds of our sample were categorised as having high availability of specialisation in nursing home and home care services. The larger, more central municipalities had higher availability of specialisation compared to medium-sized and small, less central municipalities. Conclusions: Our study indicates that a majority of nursing homes and home care services provide specialised and differentiated services that serve patient groups of different ages and diagnoses. Municipalities' population size and centrality are associated with availability of specialised services in nursing homes and home care services.

BackgroundThe Doloplus-2 is a pain assessment scale for assessing pain in older adults with cognitive impairment. It is used in clinical practice and research. However, evidence for its measurement properties, feasibility and clinical utility remain incomplete. This systematic review synthesizes previous research on the measurement properties, feasibility and clinical utility of the scale.MethodWe conducted a systematic search in three databases (CINAHL, Medline and PsycINFO) for studies published in English, French, German, Dutch/Flemish or a Scandinavian language between 1990 and April 2017. We also reviewed the Doloplus-2 homepage and reference lists of included studies to supplement our search. Two reviewers independently reviewed titles and abstracts and performed the quality assessment and data abstraction.ResultsA total of 24 studies were included in this systematic review. The quality of the studies varied, but many lacked sufficient detail about the samples and response rates. The Doloplus-2 has been studied using diverse samples in a variety of settings; most study participants were in long-term care and in people with dementia. Sixteen studies addressed various aspects of the scale’s feasibility and clinical utility, but their results are limited and inconsistent across settings and samples. Support for the scale’s reliability, validity and responsiveness varied widely across the studies. Generally, the reliability coefficients reached acceptable benchmarks, but the evidence for different aspects of the scale’s validity and responsiveness was incomplete.ConclusionAdditional high-quality studies are warranted to determine in which populations of older adults with cognitive impairment the Doloplus-2 is reliable, valid and feasible. The ability of the Doloplus-2 to meaningfully quantify pain, measure treatment response and improve patient outcomes also needs further investigation.Trial registrationPROSPERO reg. no.: CRD42016049697 registered 20. Oct. 2016.Electronic supplementary materialThe online version of this article (10.1186/s12877-017-0643-9) contains supplementary material, which is available to authorized users.