Co-Designing a Palliative Dementia Care Framework to Support Holistic Assessment and Decision Making: The EMBED-Care Framework.

BACKGROUND: People with dementia have complex palliative care needs that are often unmet, including physical and psycho-social needs. It is essential to empower people with dementia, family carers and professionals to better assess and manage care needs. We aimed to co-design a palliative dementia care Framework delivered through a digital app to support holistic assessment and decision making for care in the community and care homes-the EMBED-Care Framework. METHODS: A systematic co-design approach was adopted to develop the EMBED-Care Framework across three stages: 1) Framework analysis to synthesise data from preceding evidence reviews, large routine clinical data and cohort studies of unmet palliative dementia care need; 2) Co-design using iterative workshops with people with dementia, family carers and health and social care professionals to construct the components, design of the app and implementation requirements; and 3) User testing to refine the final Framework and app, and strengthen use for clinical practice and methods of evaluation. RESULTS: The Framework was co-designed for delivery through an app delivered by aTouchAway. It comprised five main components: 1) holistic assessment of palliative care needs using the Integrated Palliative care Outcome Scale-Dementia (IPOS-Dem); 2) alert system of IPOS-Dem scores to highlight unmet needs; 3) IPOS-Dem scores and alerts enable shared decision making between the practitioner, patient and/or carer to support priority setting and goals of care; 4) evidence-informed clinical decision support tools automatically linked with identified needs to manage care; and 5) Training package for users incorporating face-to-face sessions, clinical champions who received additional face-to-face sessions, animated videos and manual covering the main intervention components and email and telephone support from the research team. CONCLUSIONS: This is a novel digital palliative dementia care intervention to link holistic assessment with clinical decision support tools that are practical and easy to use but address the complexity of palliative dementia care. The Framework is ready for feasibility testing and pilot studies for people with dementia residing at home or in a care home. PATIENT OR PUBLIC CONTRIBUTION: We were guided by our Patient and Public Involvement (PPI) group consisting of three people with mild dementia, including younger onset dementia, and seven family carers throughout the project. They supported the overall development of the Framework, including planning of workshops, interpreting findings and testing the framework in our PPI meetings.

Best practice in dementia health care: Key clinical practice pointers from a national conference and innovative opportunities for pharmacy practice.

OBJECTIVE: Sub-optimal care of people living with dementia has serious consequences for older populations. The 2021 Australian Royal Commission noted that a large proportion of older adults in aged care live with dementia, yet there are limitations in the knowledge and understanding of staff who care for them. In the pursuit of educating pharmacists, physicians, allied health care professionals, researchers, academics, people living with dementia and their carers, and the public, who are facing the challenges of dementia management, the 'Best Practice in Dementia Health Care' conference was held on November 10, 2022 at Western Health (Sunshine Hospital, Melbourne, Australia). METHODS: Sixteen experts presented on the current practice and challenges associated with delivering best practice dementia health care to older Australians, often highlighting how medication-related challenges impacted on their area of practice. RESULTS: Presenters highlighted the importance of individualised medication management plans, considerations of culture and Indigenous communities, the role of technology, and the impact of exercise and the physical environment on care of people living with dementia. Key clinical practice messages from each expert presenter fit into four main topics: 'navigating complexities of medication management'; 'enhancing wellbeing'; 'supportive settings and environments'; and 'programs and services improving care'. CONCLUSIONS: Pharmacists are crucial members of allied health care teams. They have the necessary medication and comorbidity expertise to review medication regimens, liaise with all health care providers, and provide holistic, pharmacological and non-pharmacological patient education. Towards providing best practice dementia health care, pharmacists can contribute in several ways, such as providing health practitioner education to increase understanding about medications and how they can impact on allied health practice, to ensure that medications are prescribed appropriately and safely. Further, pharmacists can make available resources to ensure people living with dementia receive culturally safe and appropriate care, while advocating for greater understanding of the history and experiences of people living with dementia to ensure care aligns with their day-to-day routines. Finally, pharmacists can provide peer-support to other health care professionals and care staff to ensure optimal management of behavioural and psychological symptoms of dementia. The information and insights shared at the conference can serve as a valuable resource for pharmacists and other health care professionals and researchers working to improve the lives of those living with dementia.

A palliative care goals model for people with dementia and their family: Consensus achieved in an international Delphi study.

BACKGROUND: Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life. AIM: To develop a multidimensional international palliative care goals model in dementia for use in practice. DESIGN: International Delphi study integrating consensus and evidence from a meta-qualitative study. The Delphi panel rated statements about the model on a 5-point agreement scale. The criteria for consensus were pre-specified. SETTING/PARTICIPANTS: Seventeen researchers from eight countries developed an initial model, and 169 candidate panellists were invited to the international online Delphi study. RESULTS: Panellists (107; response 63.3%) resided in 33 countries. The model comprised four main care goals: (1) Comfort ensured; (2) Control over function maintained; (3) Identity protected and personhood respected and (4) Coping with grief and loss-person and caregiver supported. The model reflects how needs and care goals change over time with the progression of dementia, concluding with bereavement support. The first version of the model achieved a consensus after which it was slightly refined based on feedback. We did not achieve a consensus on adding a goal of life prolongation, and on use of the model by people with dementia and family themselves. CONCLUSION: A new palliative care goals model for people with dementia and their families includes relationship aspects for use by professionals and achieved a consensus among a panel with diverse cultural background. The position of life prolongation in relation to palliative care goals needs further research.

Observational learning of threat-related attentional bias.

Attentional bias to threat has been almost exclusively examined after participants experienced repeated pairings between a conditioned stimulus (CS) and an aversive unconditioned stimulus (US). This study aimed to determine whether threat-related attentional capture can result from observational learning, when participants acquire knowledge of the aversive qualities of a stimulus without themselves experiencing aversive outcomes. Non-clinical young-adult participants (N = 38) first watched a video of an individual (the demonstrator) performing a Pavlovian conditioning task in which one colour was paired with shock (CS+) and another colour was neutral (CS-). They then carried out visual search for a shape-defined target. Oculomotor measures evidenced an attentional bias toward the CS+ colour, suggesting that threat-related attentional capture can ensue from observational learning. Exploratory analyses also revealed that this effect was positively correlated with empathy for the demonstrator. Our findings extend empirical and theoretical knowledge about threat-driven attention and provide valuable insights to better understand the formation of anxiety disorders.

Effects of physical activity on depressive symptoms in older caregivers: The IMPACCT randomized controlled trial.

OBJECTIVES: Physical activity (PA) can reduce depressive symptoms but has not been tested amongst depressed older caregivers and their care-recipients. The aim of this single-blind randomized controlled trial was to investigate the effect of a 6-month tailored PA program on depressive symptoms in older caregivers. METHOD: Caregivers were included if they had scores of ≥5 on the 15-item geriatric depression scale (GDS-15). Care-recipients could have any type of physical, mental or cognitive condition requiring support. The PA intervention group completed an individualized program based on the Otago-Plus Exercise Program. The primary outcome was improvement in depressive symptoms in caregivers measured at six and 12 months. RESULTS: Two hundred and twelve participants (91 dyads and 30 caregivers only) were randomized using a 3:3:1 ratio to PA intervention, social-control, and usual-care control groups. There were no significant differences in depressive symptoms of the caregivers between the three groups at 6 months or 12 months. However, more than 50% of caregivers in all three groups no longer had a GDS-15 score ≥5 at 6 months. Further analysis revealed that caregivers in the PA group caring for someone with a standardised mini-mental state examination (SMMSE) score ≥24 had significantly less depressive symptoms than those caring for someone with a SMMSE score <24 compared with social-control (p < 0.02) and usual-care groups (p < 0.02). CONCLUSIONS: A PA intervention may be beneficial for some caregivers in reducing symptoms of depression but may not be as beneficial to caregivers of people living with cognitive impairment.

Lessons learnt from a community-driven digital social connection pilot program for people living with dementia: A qualitative interview study with key stakeholders.

INTRODUCTION: In response to COVID-19 and mandated physical distancing, a new digital social connection program was developed and implemented by the local community in a large regional town in western Victoria, Australia. This pilot program, the Digital Inclusion-Social Connections (DI-SC) program, aimed to support people living with dementia to use a digital device to access social connection activities. OBJECTIVE: The objective of this study is to inform the local community implementing the DI-SC program of key stakeholder experience of DI-SC process and outcomes to support future development and potential translation of digital social connections programs for people living with dementia. DESIGN: Three semi-structured focus groups and two interviews were conducted with a total of fifteen participants. Data was transcribed verbatim and thematically analysed. FINDINGS: Three main themes were identified describing factors as influencing the process and outcomes of the DI-SC program: understanding dementia; personal choice and control; and service planning and coordination. Six sub-themes were identified: matching capability; establishing a relationship; creating opportunities for different interactions; ownership of the device, program coordination and defining the volunteer digital mentor role. CONCLUSION: Key stakeholders perceived the DI-SC program as an acceptable way of supporting people living with dementia to engage in activities they found enjoyable promoting social connection with care partners and others. DI-SC program outcomes were impacted by inappropriate training and a lack of program coordination. The findings of this study may inform future development and implementation of digital social connection programs for vulnerable populations at risk of social isolation.

Assessment of revascularization impact on microvascular oxygenation and perfusion using spatial frequency domain imaging.

The microvasculature (with vessels <100 µm in diameter) plays a crucial role in tissue oxygenation, perfusion and wound healing in the lower limb. While this holds clinical significance, microvasculature evaluation in the limbs is not a standard practice. Surgical interventions focus on reestablishing blood flow in larger vessels affected by the peripheral artery disease (PAD). Nevertheless, the impact of revascularization on tissue oxygenation and perfusion in severe microvascular disease (MVD) is still unknown. We present the cases of two patients who underwent surgical revascularization for peripheral blood flow with different outcomes. Patient A had PAD, while B had PAD, severe MVD and a non-healing wound. Although both showed improvements in ankle-brachial index post-op, spatial frequency domain imaging metrics (which measure microvascular oxygenation and perfusion) remained unchanged in B, indicating a potential gap in assessing the surgical efficacy in MVD using ankle brachial index and emphasizing microcirculation evaluation in optimizing wound healing outcomes.

A mixed methods evaluation of a program exploring predeath grief and loss for carers of people with rarer dementias.

OBJECTIVES: Predeath grief conceptualizes complex feelings of loss experienced for someone who is still living and is linked to poor emotional well-being. The Road Less Travelled program aimed to help carers of people with rarer dementias identify and process predeath grief. This study evaluated the feasibility, acceptability, and preliminary effectiveness of this program. DESIGN: Pre-post interventional mixed methods study. SETTING: Online videoconference group program for carers across the UK held in 2021. PARTICIPANTS: Nine family carers of someone living with a rare form of dementia. Eight were female and one male (mean age 58) with two facilitators. INTERVENTION: The Road Less Travelled is an online, facilitated, group-based program that aims to help carers of people with rarer dementias to explore and accept feelings of grief and loss. It involved six fortnightly 2-hour sessions. MEASUREMENTS: We collected measures for a range of well-being outcomes at baseline (T1), post-intervention (T2), and 3 months post-intervention (T3). We conducted interviews with participants and facilitators at T2. RESULTS: Participant attendance was 98% across all sessions. Findings from the semistructured interviews supported the acceptability of the program and identified improvements in carer well-being. Trends in the outcome measures suggested an improvement in quality of life and a reduction in depression. CONCLUSION: The program was feasible to conduct and acceptable to participants. Qualitative reports and high attendance suggest perceived benefits to carers, including increased acceptance of grief, and support the need for a larger-scale pilot study to determine effectiveness.

Exploring how family carers of a person with dementia manage pre-death grief: A mixed methods study.

OBJECTIVES: Many family carers of a person with dementia experience pre-death grief. We aimed to identify strategies that help carers manage pre-death grief. We hypothesised that emotion and problem focussed styles would be associated with lower, and dysfunctional coping with higher grief intensity. METHODS: Mixed methods observational study using structured and semi-structured interviews with 150 family carers of people with dementia living at home or in a care home. Most participants were female (77%), caring for a parent (48%) or partner/spouse (47%) with mild (25%), moderate (43%) or severe (32%) dementia. They completed the Marwit-Meuser Caregiver Grief Inventory Short Form and the Brief Coping Orientation to Problems Experienced (Brief-COPE) questionnaire. We asked carers to identify strategies used for managing grief. We recorded field notes for 150 interviews and audio-recorded additional interviews with a sub-sample of 16 participants. RESULTS: Correlations indicated that emotion-oriented coping was associated with lower grief (R = -0.341), and dysfunctional coping with higher grief (R = 0.435), with a small association with problem-focused strategies (R = -0.109), partly supporting our hypothesis. Our qualitative themes broadly match the three Brief-COPE styles. Unhelpful strategies of denial and avoidance align with dysfunctional coping strategies. Psychological strategies (including acceptance and humour) and seeking support were consistent with emotion-focused strategies, but we did not identify a theme relating to problem-focused strategies. CONCLUSION: Most carers identified multiple strategies for processing grief. Carers could readily identify supports and services that they found helpful for managing pre-death grief, yet current services appear under-resourced to meet growing demand. (ClinicalTrials.gov ID: NCT03332979).