Guidance for family about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15 year timespan

BackgroundTo support family caregivers of people with dementia in end-of-life decision making, a family booklet on comfort care has been adapted and adopted by several European jurisdictions since the original publication in Canada in 2005.MethodsWe analyzed and compared the adaptations to the family booklets used in Canada, the Czech Republic, Italy, the Netherlands, the UK and Ireland that were made up to 2021. Qualitative content analysis was used to create a typology of changes to the original booklet. Interviews with the teams that adapted the booklets contributed to methodological triangulation. Further, using an established framework, we assessed whether the contents of the booklets addressed all domains relevant to optimal palliative dementia care.ResultsThe booklets differed in the types of treatment addressed, in particular tube feeding, euthanasia, and spiritual care. There was also variability in the extent to which medical details were provided, an emphasis on previously expressed wishes in medical decision making, addressing of treatment dilemmas at the end of life, the tone of the messages (indirect or explicit) and the discussion of prognosis (as more or less positive), and the involvement of various healthcare professionals and family caregivers in care. All booklets addressed all domains of palliative dementia care.ConclusionsWe identified core elements in providing information on end-of-life care to family caregivers of people with dementia as related to optimal palliative care in dementia. Additionally, local adaptations and updates are required to account for socio-cultural, clinical, and legal differences which may also change over time. These results may inform development of educational and advance care planning materials for different contexts.</div

Interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes: a mixed-methods systematic review

Background:Most people with dementia transition into nursing homes as their disease progresses. Their family caregivers often continue to be involved in their relative’s care and experience high level of strain at the end of life.Aim:To gather and synthesize information on interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes and provide a set of recommendations for practice.Design:Mixed-Methods Systematic Review (PROSPERO no. CRD42020217854) with convergent integrated approach.Data sources:Five electronic databases were searched from inception in November 2020. Published qualitative, quantitative, and mixed-method studies of interventions to support family caregivers of people with advanced dementia at the end of life in nursing home were included. No language or temporal limits were applied.Results:In all, 11 studies met the inclusion criteria. Data synthesis resulted in three integrated findings: (i) healthcare professionals should engage family caregivers in ongoing dialog and provide adequate time and space for sensitive discussions; (ii) end-of-life discussions should be face-to-face and supported by written information whose timing of supply may vary according to family caregivers’ preferences and the organizational policies and cultural context; and (iii) family caregivers should be provided structured psychoeducational programs tailored to their specific needs and/or regular family meetings about dementia care at the end of life.Conclusion:The findings provide useful information on which interventions may benefit family caregivers of people with advanced dementia at the end of life and where, when, and how they should be provided.Public Health and primary careGeriatrics in primary car

Decision Support Intervention for people with advanced dementia residing in a nursing home: A study protocol for an International advance care planning intervention (mySupport study)

Background Where it has been determined that a resident in a nursing home living with dementia loses decisional capacity, nursing home staff must deliver care that is in the person's best interests. Ideally, decisions should be made involving those close to the person, typically a family carer and health and social care providers. The aim of the Family Carer Decisional Support intervention is to inform family carers on end-of-life care options for a person living with advanced dementia and enable them to contribute to advance care planning. This implementation study proposes to; 1) adopt and apply the intervention internationally; and, 2) train nursing home staff to deliver the family carer decision support intervention. Methods This study will employ a multiple case study design to allow an understanding of the implementation process and to identify the factors which determine how well the intervention will work as intended. We will enrol nursing homes from each country (Canada n = 2 Republic of Ireland = 2, three regions in the UK n = 2 each, The Netherlands n = 2, Italy n = 2 and the Czech Republic n = 2) to reflect the range of characteristics in each national and local context. The RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework will guide the evaluation of implementation of the training and information resources. Our mixed methods study design has three phases to (1) establish knowledge about the context of implementation, (2) participant baseline information and measures and (3) follow up evaluation. Discussion The use of a multiple case study design will enable evaluation of the intervention in different national, regional, cultural, clinical, social and organisational contexts, and we anticipate collecting rich and in-depth data. While it is hoped that the intervention resources will impact on policy and practice in the nursing homes that are recruited to the study, the development of implementation guidelines will ensure impact on wider national policy and practice. It is our aim that the resources will be sustainable beyond the duration of the study and this will enable the resources to have a longstanding relevance for future advance care planning practice for staff, family carers and residents with advanced dementia

Implementation of nutritional guidelines in a university hospital monitored by repeated point prevalence surveys

Background/Objectives: Malnutrition is present in 20–50% of hospitalized patients, and nutritional care is a challenge. The aim was to evaluate whether the implementation of a nutritional strategy would influence nutritional care performance in a university hospital. Subjects/Methods: This was a prospective quality improvement program implementing guidelines for nutritional care, with the aim of improving nutritional practice. The Nutrition Risk Screening (NRS) 2002 was used. Point prevalence surveys over 2 years to determine whether nutritional practice had improved. Results: In total, 3604 (70%) of 5183 eligible patients were screened and 1230 (34%) were at nutritional risk. Only 53% of the at-risk patients got nutritional treatment and 5% were seen by a dietician. The proportion of patients screened increased from the first to the eighth point prevalence survey (P=0.012), but not the proportion of patients treated (P=0.66). The four initial screening questions in NRS 2002 identified 92% of the patients not at nutritional risk. Conclusions: Implementation of nutritional guidelines improved the screening performance, but did not increase the proportion of patients who received nutritional treatment. Point prevalence surveys were useful to evaluate nutritional practice in this university hospital. In order to improve practice, we suggest using only the four initial screening questions in NRS 2002 to identify patients not at risk, better education in nutritional care for physicians and nurses, and more dieticians employed. Audit of implementation of guidelines, performed by health authorities, and specific reimbursement for managing nutrition may also improve practice.publishedVersio

Gated myocardial perfusion SPECT underestimates left ventricular volumes and shows high variability compared to cardiac magnetic resonance imaging -- a comparison of four different commercial automated software packages

Abstract Background We sought to compare quantification of left ventricular volumes and ejection fraction by different gated myocardial perfusion SPECT (MPS) programs with each other and to magnetic resonance (MR) imaging. Methods N = 100 patients with known or suspected coronary artery disease were examined at rest with 99 mTc-tetrofosmin gated MPS and cardiac MR imaging. Left ventricular end-diastolic volume (EDV), end-systolic volume (ESV), stroke volume (SV) and ejection fraction (EF) were obtained by analysing gated MPS data with four different programs: Quantitative Gated SPECT (QGS), GE MyoMetrix, Emory Cardiac Toolbox (ECTb) and Exini heart. Results All programs showed a mean bias compared to MR imaging of approximately -30% for EDV (-22 to -34%, p Conclusions Gated MPS, systematically underestimates left ventricular volumes by approximately 30% and shows a high variability, especially for ESV. For EF, accuracy was better, with a mean bias between -15 and 6% of EF. It may be of value to take this into consideration when determining absolute values of LV volumes and EF in a clinical setting.</p

The impact of the mySupport advance care planning intervention on family caregivers' perceptions of decision-making and care for nursing home residents with dementia: pretest-posttest study in six countries

Background the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. Objectives to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents' hospitalisations and documented advance decisions. Design a pretest-posttest design. Setting in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. Participants in total, 88 family caregivers completed baseline, intervention and follow-up assessments. Methods family caregivers' scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents' hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. Results family caregivers reported less decision-making uncertainty (-9.6, 95% confidence interval: -13.3, -6.0, P < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. Conclusions the mySupport intervention may be impactful in countries beyond the original setting.Public Health and primary careGeriatrics in primary car

Increased accuracy in computed tomography coronary angiography; a new body surface area adapted protocol

Vascular Biology and Interventio