This article presents an integrative literature review of the experience of dementia care associated with the extended palliative phase of dementia. The aim was to highlight how dementia is defined in the literature and describe what is known about the symptomatology and management of advanced dementia regarding the needs and preferences of the person with dementia and their family carer/s. There was no consistent definition of advanced dementia. The extended palliative phase was generally synonymous with end-of-life care. Advanced care planning is purported to enable professionals to work together with people with dementia and their families. A lack of understanding of palliative care among frontline practitioners was related to a dearth of educational opportunities in advanced dementia care. There are few robust concepts and theories that embrace living the best life possible during the later stages of dementia. These findings informed our subsequent work around the concept, ‘Dementia Palliare’.

Purpose: The number of prisoners over 55 years is increasing and many are at risk of developing dementia. This has generated new responsibilities for prisons to provide health and social care for older persons. The purpose of this paper is to synthesize the existing research literature regarding the phenomenon of the health and social care needs of older persons living with dementia in correctional settings.Design/methodology/approach: Using an integrative review method based on Whittemore and Knafl, the inclusion criteria for the review are: articles written in English; a focus on some form of dementia and/or older persons with discussion of dementia; to be set in a correctional context (correctional facility, prison and jail); be derived from a published peer-reviewed journal or unpublished dissertation/thesis; and be a qualitative, quantitative or mixed methods study. Based on those criteria, a search strategy was developed and executed by a health sciences librarian in the following databases: Medline, CINAHL, Embase, PsychINFO, Proquest Nursing and Allied Health and Web of Science; searches were completed up to April 2019. After data were extracted from included studies, synthesis of findings involved an iterative process where thematic analysis was facilitated by Braun and Clarke’s approach.Findings: Eight studies met the inclusion criteria. Key findings of the eight studies include recognition of dementia as a concern for correctional populations, dementia-related screening and programming for older persons and recommendations for improved screening and care practices. Most significant is the paucity of research available on this topic. Implications for research are discussed.Originality/value: This paper identified and synthesizes the limited existing international research on the health and social care needs of older persons with dementia living in correctional settings. Although existing research is scant, this review highlights the need for increased awareness of dementia as a concern among older persons living in correctional settings. As well, the review findings emphasize that enhanced screening and interventions, particularly tailored approaches, are imperative to support those living with dementia in correctional settings.

This paper examines the provision of integrated advanced dementia care within seven European countries and critically reviews the potential contribution of the Prudent Healthcare perspective as a starting point for reform. Progressive efforts to innovate, promote quality and integrate care are tempered with the reality of resource constraints. Some policy makers in Europe and North America have turned their attention to the principles of Prudent Healthcare as a potential mechanism to maximise benefits for patients within available resources. As dementia progresses, living well requires increasing levels of support and care, people living with advanced dementia have complex health and social care needs, are highly dependent on others but are not yet at the terminal end stage of the condition. People with advanced dementia can benefit from a dementia specific palliative approach to care (Palliare), that helps them to live the best life possible for the months and often years they live with advanced dementia. It is also highly desirable to align policy innovations with integrated palliative care practice models and the education of the dementia workforce to accelerate informed improvements in advanced dementia care. There may be some coherence, at least superficially between Prudent Healthcare and integrated palliative care models such as Palliare. It is argued that for successful implementation, both require practitioners to be equipped with knowledge and skills and be empowered to deliver high quality care often within impoverished care environments. Adoption of the prudent perspective will however require development of a repertoire of approaches to hear the voice or proxy voice of people living with advanced dementia and to commit to the development and implementation of new evidence for advanced dementia practice. Evidence informing this policy debate draws upon contemporary literature and policy and the findings from research activities undertaken by the Palliare project supported through the Erasmus+ K2 Strategic Partnerships funding programme.

There is a paucity of robust research concerning the care experiences of peoplewith advanced dementia within Europe. It is essential to understand these experiences if weare to address care inequalities and create impactful dementia policies to improve servicesthat support individuals and enable family caring. To identify the strengths and weaknesses in daily life perceived by people with dementia and family caring across Europe by exemplifying experiences and the range of typical care settings for advanced dementia care in seven partner countries. Twenty two in-depth qualitative case studies were completed in seven European countries across a range of care settings considered typical within that country. Narrative accounts of care illuminated a unique set of experiences and highlighted what was working well (strengths or positive aspects) and not so well (weaknesses or negative aspects) for people with advanced dementia and family caring. A constant comparative method of analysis through thematic synthesis was used to identify the common themes. Eight key themes were identified; Early diagnosis, good coordination between service providers, future planning, support and education for carers, enabling the person with dementia to live thebest life possible and education on advanced dementia for professional and family caregiverswere all significant and recurring issues considered important for care experiences to bepositive. People with advanced dementia may have limited opportunities for self-realization and become increasingly reliant on the support of others to maximize their health and well-being. Careful attention must be given to their psychosocial well-being, living environment and family caring to enable them to live the best life possible. Building on what the case studies tell us about what works well, we discuss the potential for integrating the findings into interprofesional learning solutions for the professional workforce across Europe to champion practice-based change.