The aim of the systematic review was to determine the effectiveness of organizational-level person-centered care for people living with dementia in relation to their quality of life, mood, neuropsychiatric symptoms and function. ALOIS, the Cochrane Dementia and Cognitive Improvement Group Specialised Register databases, were searched up to June 2018 using the terms dementia OR cognitive impairment OR Alzheimer AND non-pharmacological AND personhood OR person-centered care. Reviewed studies included randomized controlled trials (RCTs), cluster-randomized trials (CRTs) and quasi-experimental studies that compared outcomes of person-centered care and usual (non-person-centered) care, for people with a diagnosis of dementia. The search yielded 12 eligible studies with a total of 2599 people living with dementia in long-term care homes, 600 receiving hospital care and 293 living in extra-care community housing. Random-effects models were used to pool adjusted risk ratios and standard mean differences from all studies; the findings were assessed followed the PRISMA guidelines and GRADE criteria. Statistical heterogeneity was assessed using the I 2 method and Chi 2 P value; studies with low statistical heterogeneity were analyzed using a random-effects model with restricted maximum likelihood estimation in R. Analyses of pre/post data within 12 months identified: a significant effect for quality of life (standardized mean difference (SMD) 0.16 and 95% CI 0.03 to 0.28; studies = 6; I 2 = 22%); non-significant effects for neuropsychiatric symptoms (SMD 0.06, 95% CI -0.08 to 0.19; studies = 4; I 2 = 0%) and well-being (SMD 0.15, 95% CI -0.15 to 0.45; studies = 4; I 2 = 77%); and no effects for agitation (SMD -0.05 (95% CI -0.17 to -0.07; studies 5; I 2 = 0%) and depression (SMD -0.06 and 95% CI -0.27 to 0.15, studies = 5; I 2 = 53%). The evidence from this review recommends implementation of person-centered care at the organizational-level to support the quality of life of people with living with dementia.
Antipsychotic and other tranquilising medicines are prescribed to help care staff manages behaviour in one-quarter of older people living in Australian long-term care homes. While these medicines pose significant health risks, particularly for people with dementia, reliance on their use occurs when staff are not educated to respond to resident behaviour using nonpharmacological approaches. The Halting Antipsychotic use in Long-Term care (HALT) single-arm study was undertaken to address this issue with 139 people 60 years and over with behaviours of concern for staff living in 24 care homes. A train-the-trainer approach delivered person-centred care education and support for 22 HALT (nurse) champions and 135 direct care staff, dementia management education for visiting general practitioners (GP) and pharmacists, use of an individualised deprescribing protocol for residents, and awareness-raising for the resident's family. The HALT champions completed open-ended questionnaires and semistructured interviews to identify the contextual elements they considered most critical to facilitating, educating care staff, and achieving success with the study intervention. They reported that person-centred approaches helped care staff to respond proactively to resident behaviours in the absence of antipsychotic medicines; the champions considered that this required strong managerial support, champion empowerment to lead change, reeducation of care staff, and the cooperation of families and GPs.
Objectives: to report on acute hospital care experiences for persons with dementia and family/carers in a pilot study (PiP) of person-centred care compared with usual care. Methods: participants were recruited from one acute aged care ward and one mixed medical/surgical ward. One-on-one interviews occurred soon after discharge using a semi-structured interview guide framed by person-centred principles whereby the person is: V—valued; I—treated as an individual; P—perceived as having a unique identity; and S—supported socially and psychologically. Data were analysed deductively with reference to these a priori principles. Results: 11 consented persons with dementia and 36 family/carers participated. A total of eight core VIPS concepts were derived from the data. While many occasions of person-centred care occurred, there was variability in staff expertise, interest and aptitude for dementia care work. Neglect of person-centred principles more frequently occurred for the usual care group, where staff failed to place the person and their family/carer at the centre of service. Conclusions: person-centred services for persons with dementia requires that hospital executive equip staff with the relevant knowledge, skills and support to adhere to person-centred care guidelines. Hospitals must address workplace cultures and procedures that favour organisational systems over person-centred services.
Background Prognostic uncertainty and the need for proxy decision-making owing to cognitive impairment in advanced dementia, adds complexity to end-of-life care planning within the long-term care setting. Case conferences provide a structure to facilitate difficult conversations and an opportunity for family and clinicians to engage in prospective planning, and reach agreement on goals of end-of-life care. Objective To explore interactions between multidisciplinary healthcare clinicians and families during facilitated case conferences on end-of-life care for residents with advanced dementia. Methods A qualitative approach was used. Transcripts of audio-recorded case conferences facilitated by a trained registered nurse were coded by two independent researchers and analysed inductively. Transcripts were selected from an available pool until thematic saturation was reached. Emerging themes were confirmed with the wider research group. Results Thematic saturation was reached after 25 transcripts. An overarching theme concerned the ways in which clinicians and families bridged medical and person-centred perspectives. Subthemes included: details of day-to-day care versus establishing overall goals of care; expression of emotion versus retreat from emotion; and missed opportunities versus expressed cues. Successful facilitation served to ‘bridge the gap’ between family and clinicians. Conclusion Facilitation of case conferences for residents with advanced dementia should focus on ensuring that: clinicians do not miss opportunities to discuss end-of-life care; discussions on the minutiae of care regularly return to the resident’s broader goals of care; and information on dementia and treatments provided by clinicians is integrated with advice by family members regarding the resident’s premorbid values and likely preferences.
Objectives: This study investigated the views of people living with dementia and their families/care partners on (i) what they find helpful or unhelpful regarding behavioral changes, i.e. which coping strategies they used for themselves and/or which responses from others, and (ii) what they consider to be appropriate terminology to describe behavioral changes. Design & setting: One-on-one semi-structured interviews were conducted with people living with dementia and families/care partners face to face, online, or over the telephone. Measurements: Data from open-ended questions were analyzed inductively. Common themes were derived from the data using an iterative approach. Results: Twenty-one people living with dementia and 20 family members/care partners were interviewed. Four main themes were derived for helpful responses, and three main themes for unhelpful responses. Helpful responses included providing clear professional support pathways and supportive environments where people living with dementia can engage in physical, cognitive, social, and spiritual activities. Unhelpful responses included discriminatory treatment from others and use of medicalized terminology. Views toward terminology varied; people with lived experience most favored using “changed behaviors” over other terminology. Areas for improvement included targeting dementia stigma, societal education on dementia, and building confidence in people living with dementia by focusing on living well with dementia. Conclusion: Knowledge of the views of people living with dementia may assist healthcare professionals to provide more appropriate care for people living with dementia.
(1) Background. A range of self-service technologies (SST) have been adapted to support the health of older people. Factors involved in older people’s and health professionals’ perceptions of SST in older age were investigated. (2) Methods. Customer Dominant Logic guided this prospective mixed-methods study, including surveys with people 70 years and over and health professionals and individual semi-structured interviews in a sample of survey respondents. Survey data were descriptively analysed, while interview themes were derived inductively. (3) Results. Surveyed (n = 12) people 70 years and over placed higher value, expressed more positive user experience, were more satisfied and had greater recognition of the benefits of SST, compared with (n = 10) health professionals (p = 0.001), who considered them to be inferior to traditional healthcare. All seven interviewees agreed that despite accessibility issues and complexity, they valued SST support of older people’s health, thereby confirming the relevance of Customer Dominant Logic in SST offerings. (4) Conclusions. Since older participants were positive and satisfied in using SSTs that are health-supporting, health professionals have a role in encouraging and assisting older people in their use. This requires targeted SST education for health professionals, and more accessible, user-friendly SST and technological support for older people.
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