Co-design of the EMBED-Care Framework as an intervention to enhance shared decision-making for people affected by dementia and practitioners, comprising holistic assessment, linked with clinical decision support tools: A qualitative study.

INTRODUCTION: Shared decision-making intends to align care provision with individuals' preferences. However, the involvement of people living with dementia in decision-making about their care varies. We aimed to co-design the EMBED-Care Framework, to enhance shared decision-making between people affected by dementia and practitioners. METHODS: A theory and evidence driven co-design study was conducted, using iterative workshops, informed by a theoretical model of shared decision-making and the EMBED-Care Framework (the intervention) for person-centred holistic palliative dementia care. The intervention incorporates a holistic outcome measure for assessment and review, linked with clinical decision-support tools to support shared decision-making. We drew on the Medical Research Council (MRC) guidance for developing and evaluating complex interventions. Participants included people with dementia of any type, current or bereaved family carers and practitioners. We recruited via established dementia groups and research and clinical networks. Data were analysed using reflexive thematic analysis to explore how and when the intervention could enhance communication and shared decision-making, and the requirements for use, presented as a logic model. RESULTS: Five co-design workshops were undertaken with participants comprising people affected by dementia (n = 18) and practitioners (n = 36). Three themes were generated, comprising: (1) 'knowing the person and personalisation of care', involving the person with dementia and/or family carer identifying the needs of the person using a holistic assessment. (2) 'engaging and considering the perspectives of all involved in decision-making' required listening to the person and the family to understand their priorities, and to manage multiple preferences. (3) 'Training and support activities' to use the Framework through use of animated videos to convey information, such as to understand the outcome measure used to assess symptoms. CONCLUSIONS: The intervention developed sought to enhance shared decision-making with individuals affected by dementia and practitioners, through increased shared knowledge of individual priorities and choices for care and treatment. The workshops generated understanding to manage disagreements in determining priorities. Practitioners require face-to-face training on the intervention, and on communication to manage sensitive conversations about symptoms, care and treatment with individuals and their family. The findings informed the construction of a logic model to illustrate how the intervention is intended to work.

Co-design of a theory-based implementation plan for a holistic eHealth assessment and decision support framework for people with dementia in care homes.

Background: Despite positive findings around the use of eHealth in dementia care, it is rarely translated into routine practice. This can be facilitated by early involvement of end-users in the development of an implementation plan. This study aimed to co-design strategies to implement an eHealth intervention, the EMBED-Care Framework, to support assessment and decision-making for people with dementia in care homes. Methods: A qualitative co-design method was applied through a series of workshops. Participants included family carers and health and social care practitioners. People with dementia were included through a series of stakeholder engagement meetings. The workshops focused on co-developing strategies in response to identified determinants of implementation. A codebook thematic analytic approach was taken, guided by the Normalisation Process Theory (NPT). Results: Three workshops were conducted from July 2021 to November 2021, attended by 39 participants. Three overarching phases of implementation were identified which aligned with the constructs of the NPT: (a) incentivising adoption of the Framework, which requires promotion of its benefits and alignment with recommendations for good quality dementia care to engage stakeholders, relating to 'coherence' and 'cognitive participation' constructs; (b) enabling its operation, which requires ensuring compatibility with care home processes, provision of training and support from 'champions', relating to 'collective action'; (c) sustaining use of the Framework, which requires monitoring of implementation and appraisal of its effects, relating to 'reflexive monitoring'. Conclusions: We have developed a multi-strategy, theoretically driven plan to implement eHealth to support assessment and decision-making for people with dementia in care homes. Successful implementation requires incentivisation to adopt, ability to operate and motivation to sustain use of eHealth. The plan is strengthened through collaborating with end-users to increase its value, credibility and real-world relevance. The theoretically informed strategies target mechanisms of the NPT, demonstrated to shape the implementation process and outcomes, ready for testing.

How do person-centered outcome measures enable shared decision-making for people with dementia and family carers?-A systematic review.

Objectives: To identify published evidence on person-centered outcome measures (PCOMs) used in dementia care and to explore how PCOMs facilitate shared decision-making and improve outcomes of care. To build a logic model based on the findings, depicting linkages with PCOM impact mechanisms and care outcomes. Design: Mixed-methods systematic review. We searched PsycINFO, MEDLINE, CINAHL, and ASSIA from databases and included studies reporting experiences and/or impact of PCOM use among people with dementia, family carers, and/or practitioners. Groen Van de Ven's model of collaborative deliberation informed the elements of shared decision-making in dementia care in the abstraction, analysis, and interpretation of data. Data were narratively synthesized to develop the logic model. Setting: Studies were conducted in long-term care, mixed settings, emergency department, general primary care, and geriatric clinics. Participants: A total of 1064 participants were included in the review. Results: Ten studies were included. PCOMs can facilitate shared decision-making through "knowing the person," "identifying problems, priorities for care and treatment and goal setting," "evaluating decisions", and "implementation considerations for PCOM use." Weak evidence on the impact of PCOMs to improve communication between individuals and practitioners, physical function, and activities of daily living. Conclusions: PCOMs can enable shared decision-making and impact outcomes through facilitating collaborative working between the person's network of family and practitioners to identify and manage symptoms and concerns. The constructed logic model demonstrates the key mechanisms to discuss priorities for care and treatment, and to evaluate decisions and outcomes. A future area of research is training for family carers to use PCOMs with practitioners.

Implementation of eHealth to Support Assessment and Decision-making for Residents With Dementia in Long-term Care: Systematic Review.

BACKGROUND: As dementia progresses, symptoms and concerns increase, causing considerable distress for the person and their caregiver. The integration of care between care homes and health care services is vital to meet increasing care needs and maintain quality of life. However, care home access to high-quality health care is inequitable. eHealth can facilitate this by supporting remote specialist input on care processes, such as clinical assessment and decision-making, and streamlining care on site. How to best implement eHealth in the care home setting is unclear. OBJECTIVE: The aim of this review was to identify the key factors that influence the implementation of eHealth for people living with dementia in long-term care. METHODS: A systematic search of Embase, PsycINFO, MEDLINE, and CINAHL was conducted to identify studies published between 2000 and 2020. Studies were eligible if they focused on eHealth interventions to improve treatment and care assessment or decision-making for residents with dementia in care homes. Data were thematically analyzed and deductively mapped onto the 6 constructs of the adapted Consolidated Framework for Implementation Research (CFIR). The results are presented as a narrative synthesis. RESULTS: A total of 29 studies were included, focusing on a variety of eHealth interventions, including remote video consultations and clinical decision support tools. Key factors that influenced eHealth implementation were identified across all 6 constructs of the CFIR. Most concerned the inner setting construct on requirements for implementation in the care home, such as providing a conducive learning climate, engaged leadership, and sufficient training and resources. A total of 4 novel subconstructs were identified to inform the implementation requirements to meet resident needs and engage end users. CONCLUSIONS: Implementing eHealth in care homes for people with dementia is multifactorial and complex, involving interaction between residents, staff, and organizations. It requires an emphasis on the needs of residents and the engagement of end users in the implementation process. A novel conceptual model of the key factors was developed and translated into 18 practical recommendations on the implementation of eHealth in long-term care to guide implementers or innovators in care homes. Successful implementation of eHealth is required to maximize uptake and drive improvements in integrated health and social care.

Quality indicators for dementia and older people nearing the end of life: A systematic review.

BACKGROUND: Robust quality indicators (QIs) are essential for monitoring and improving the quality of care and learning from good practice. We aimed to identify and assess QIs for the care of older people and people with dementia who are nearing the end of life and recommend QIs for use with routinely collected electronic data across care settings. METHODS: A systematic review was conducted, including five databases and reference chaining. Studies describing the development of QIs for care of older people and those with dementia nearing the end of life were included. QIs were categorized as relating to processes or outcomes, and mapped against six care domains. The psychometric properties (acceptability, evidence base, definition, feasibility, reliability, and validity) of each QI were assessed; QIs were categorized as robust, moderate, or poor. RESULTS: From 12,980 titles and abstracts screened, 37 papers and 976 QIs were included. Process and outcome QIs accounted for 780 (79.7%) and 196 (20.3%) of all QIs, respectively. Many of the QIs concerned physical aspects of care (n = 492, 50.4%), and very few concerned spiritual and cultural aspects of care (n = 19, 1.9%). Three hundred and fifteen (32.3%) QIs were robust and of those 220 were measurable using routinely collected electronic data. The final shortlist of 71 QIs came from seven studies. CONCLUSIONS: Of the numerous QIs developed for care of older adults and those with dementia nearing the end of life, most had poor or moderate psychometric properties or were not designed for use with routinely collected electronic datasets. Infrastructure for data availability, combined with use of robust QIs, is important for enhancing understanding of care provided to this population, identifying unmet needs, and improving service provision.

A Review of Qualitative Research of Perception and Experiences of Dementia Among Adults From Black, African, and Caribbean Background: What and Whom Are We Researching?

BACKGROUND AND OBJECTIVES: Black, African, and Caribbean (BAC) families are disproportionately affected by dementia but engage less with services. Studies reporting their experiences of dementia have tended to aggregate people from diverse backgrounds, without considering the impact of this diversity, or researchers' ethnicities. We investigated participants' and researchers' ethnic identities, exploring how this relates to findings. RESEARCH DESIGN AND METHODS: We searched electronic databases in September 2018, for qualitative studies exploring how participants of Black ethnicity understand and experience dementia and dementia care. We reported participants' and researchers' ethnicities, and meta-synthesized qualitative findings regarding how ethnicity influences experiences and understanding of dementia. RESULTS: Twenty-eight papers reported 25 studies; in United States (n = 17), United Kingdom (n = 7), and Netherlands (n = 1). 350/492 (71%) of participants were in U.S. studies and described as African American; participants in U.K. studies as Caribbean (n = 45), African/Caribbean (n = 44), African (n = 28), Black British (n = 7), or Indo-Caribbean (n = 1); and in Netherlands as Surinamese Creole (n = 17). 6/25 (24%) of studies reported involving recruiters/interviewers matching participants' ethnicity; and 14/25 (56%) involved an author/advisor from a BAC background during analysis/procedures. We identified four themes: Dementia does not relate to me; Inappropriate and disrespectful services; Kinship and responsibility; Importance of religion. DISCUSSION AND IMPLICATIONS: Studies were mostly from a U.S. African American perspective, by researchers who were not of BAC background. Themes of dementia diagnosis and services feeling less relevant to participants than the majority population resonated across studies. We caution against the racialization of these findings, which can apply to many differing minority groups.

Dementia severity at death: a register-based cohort study.

BACKGROUND: One third of older people are estimated to die with dementia, which is a principal cause of death in developed countries. While it is assumed that people die with severe dementia this is not based on evidence. METHODS: Cohort study using a large secondary mental healthcare database in North London, UK. We included people aged over 65 years, diagnosed with dementia between 2008 and 2016, who subsequently died. We estimated dementia severity using mini-mental state examination (MMSE) scores, adjusting for the time between last score and death using the average annual MMSE decline in the cohort (1.5 points/year). We explored the association of sociodemographic and clinical factors, including medication use, with estimated MMSE score at death using linear regression. RESULTS: In 1400 people dying with dementia, mean estimated MMSE at death was 15.3 (standard deviation 7.0). Of the cohort, 22.2% (95% confidence interval 20.1, 24.5) died with mild dementia; 50.4% (47.8, 53.0) moderate; and 27.4% (25.1, 29.8) with severe dementia. In fully adjusted models, more severe dementia at death was observed in women, Black, Asian and other ethnic minorities, agitated individuals, and those taking antipsychotic medication. CONCLUSIONS: Only one quarter of people who die with dementia are at the severe stage of the illness. This finding informs clinical and public understanding of dementia prognosis. Provision of end-of-life services should account for this and healthcare professionals should be aware of high rates of mild and moderate dementia at end of life and consider how this affects clinical decision-making.