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.

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).

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 ( = 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-).

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.

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.

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.

Experiences of Carers and People with Dementia from Ethnic Minority Groups Managing Eating and Drinking at Home in the United Kingdom.

Eating and drinking difficulties, such as loss of appetite and swallowing problems, are common in dementia, but little is known about the experiences of ethnic minority groups who are managing these difficulties at home. The purpose of our study was to explore the meaning of food, the impact of dementia on eating and drinking, and carers' experiences of support. We undertook semi-structured interviews with 17 carers and people with dementia from ethnic minority backgrounds living in England, using thematic analysis to analyse the data.

Rapid development of a COVID-19 care planning decision-aid for family carers of people living with dementia.

Introduction: COVID-19 has disproportionately affected people living with dementia and their carers. Its effects on health and social care systems necessitated a rapid-response approach to care planning and decision-making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. Considering this, a decision-aid to help families of persons with dementia was developed.

Cross-cultural conceptualization of a good end of life with dementia: a qualitative study.

Background: Research on the nature of a "good death" has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models.

Methods: We combined published qualitative studies about end of life with dementia, focus group and individual interviews with the researchers, and video-conferencing and continuous email discussions.

How do factors of sociodemographic, health literacy and dementia experience influence carers' knowledge of dementia?

Background: Dementia is a life limiting disease following a progressive trajectory. As carers often become key decision makers, their knowledge of dementia will have health implications for the person living with dementia as well as carer's psychological wellbeing.

Aim: To explore how sociodemographic factors, health literacy and dementia experience influence family carers knowledge about dementia.

Practical and emotional preparation for death: A mixed methods study investigating experiences of family carers of people with dementia.

Background: When family carers are more prepared for the end of the life of a person they care for, they report improved bereavement outcomes. Few studies have explored how carers prepare for the death of a person with dementia. We aimed to explore how carers for people with all stages of dementia experience preparing for end of life care and death.

Grief in family carers of people living with dementia: A systematic review.

Objectives: Grief research in family carers of people with dementia has increased. We aimed to report the prevalence of pre-death and post-death grief and to synthesize associated factors and the relationship between pre-death factors and post-death grief and services used to manage grief.

Design: (Prospero protocol: CRD42020165071) We systematically reviewed literature from PsycINFO, MEDLINE, CINAHL, and ASSIA until April 2020.

Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life.

Background: People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. We aimed to explore the challenges faced by family carers of people living with dementia during the first wave of the COVID-19 pandemic in England, as reported by charity telephone support line staff, who were able to objectively discuss a range of different experiences of many different carers who call the helpline.

Usefulness and acceptability of an animation to raise awareness to grief experienced by carers of individuals with dementia.

Aim: Many carers of individuals with dementia experience high levels of grief before and after the death of the person with dementia. This study aimed to determine the usefulness, acceptability, and relevance of an animation developed to raise awareness to grief experienced by carers of people with dementia.

Methods: This research had a cross-sectional survey design.

Enteral tube feeding for people with severe dementia.

Background: The balance of benefits and harms associated with enteral tube feeding for people with severe dementia is not clear. An increasing number of guidelines highlight the lack of evidenced benefit and potential risks of enteral tube feeding. In some areas of the world, the use of enteral tube feeding is decreasing, and in other areas it is increasing.

A decision aid to support family carers of people living with dementia towards the end-of-life: Coproduction process, outcome and reflections.

Background: Family carers of people living with dementia often need support with making decisions about care. Many find end-of-life care decisions particularly difficult. The aim of this article is to present an evidence- and theoretical-based process for developing a decision aid to support family carers of people with dementia towards the end-of-life.

Defining end of life in dementia: A systematic review.

Background: Dementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia.

How do people living with dementia perceive eating and drinking difficulties? A qualitative study.

Background: Eating and drinking problems are common among people living with later-stage dementia, yet few studies have explored their perspectives.

Objective: This study aimed to explore how people living with mild dementia understand possible future eating and drinking problems and their perspectives on assistance.

Design: Qualitative study using semi-structured interviews.

Family caregivers' and professionals' experiences of supporting people living with dementia's nutrition and hydration needs towards the end of life.

The aim of this paper was to understand the needs of family caregivers and professionals supporting people living with dementia with eating and drinking difficulties towards the end of life and the strategies they use to overcome them. A total of 41 semi-structured interviews with family caregivers (n = 21) and professionals (n = 20) were conducted in London and surrounding areas of England. Interviews were audio-recorded and transcribed verbatim.

Rapid review of decision-making for place of care and death in older people: lessons for COVID-19.

Introduction: The coronavirus pandemic (COVID-19) has affected the functioning and capacity of healthcare systems worldwide. COVID-19 has also disproportionately affected older adults. In the context of COVID-19, decision-making surrounding place of care (PoC) and place of death (PoD) in older adults involves significant new challenges.