Palliative Care In Dementia Research Articles

Implementing palliative and end of life care for people with dementia.

Dementia is characterised by memory loss, behavioural changes and decline of cognitive, social and physical functions and is a life-limiting condition. At the point of diagnosis it is classed as a palliative condition, yet there is limited public and healthcare professional awareness that, once diagnosed, a person will either die of dementia or die with dementia. This article discusses how the recognition and timing of the need for palliative dementia care is pivotal in providing person-centred care. The authors explore factors such as optimal prognostication, advance care planning, staff education and accessing support from palliative and end of life care teams and Admiral Nurses. The authors also use a fictional case study to demonstrate best practice in palliative dementia care.

Characteristics of people diagnosed with dementia vs lung cancer and cardiovascular disease at commencement of community palliative care: a population–based study

BackgroundMost people diagnosed with dementia live and die in community settings. This study aimed to: (i) describe the palliative care needs of patients with dementia at commencement of community palliative care; (ii) compare palliative care needs between patients with dementia and those with lung cancer and cardiovascular disease (CVD).MethodsThis is a population-based descriptive study that involved 8,727, 7,539 and 25,279 patients who accessed community palliative care across Australia principally because of dementia, CVD and lung cancer. Patients’ functional abilities, symptom burden and clinical condition were assessed at commencement of community alliative care using five validated instruments: Resource Utilisation Groups—Activities of Daily Living, Australia-modified Karnofsky Performance Status, Symptoms Assessment Scale, Palliative Care Problem Severity Score and Palliative Care Phase. We fitted ordinal logistic regression models to examine the differences in these assessments for dementia versus CVD and lung cancer, respectively.ResultsOverall, patients with dementia generally had low levels of distress from symptoms but poor functional problems. Compared to the other two diagnostic groups, palliative care for dementia was often initiated later and with shorter contacts. Also, patients with dementia presented with poorer functional performance (adjusted OR (aOR) = 4.02, Confidence Interval (CI): 3.68 – 4.38 for dementia vs CVD; aOR = 17.59, CI: 15.92 – 19.44 for dementia vs lung cancer) and dependency (aOR = 5.68, CI: 5.28 – 6.12 for dementia vs CVD; aOR = 24.97, CI: 22.77 – 27.39 for dementia vs lung cancer), but experienced lower levels of distress and problem severity for the majority of symptoms.ConclusionCommunity palliative care is often an ideal care option for many patients, particularly for those with dementia. We call for expansion of the palliative care workforce and options for home care support to optimize accessibility of community palliative care for dementia.

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

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. 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. 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. 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. 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.

People with dementia and family carers are welcoming of a model of dementia palliative care, but sceptical of its implementation.

A palliative care approach can improve quality-of-life for people with dementia. It is the preference of many people with dementia to remain living at home until death, with the appropriate care. To develop a successful model for dementia palliative care in the community, it is essential to assimilate the perspectives and experiences of those affected. The guiding research question for this study was: What are people with dementia and family carers' views on a model for dementia palliative care?. Focus groups (n = 3) were conducted with bereaved or current family carers (n = 11), and people with dementia (n = 2). Discussions centred around a proposed model of dementia palliative care. These were transcribed and analysed using thematic analysis. Three main themes were identified: living and dying well with dementia; reducing carer burden to fulfil the wish for home care; and lack of faith in the healthcare system. One statement which summarised the analysis was: "Dementia palliative care is a dream, but not a reality." This reflected participants' repeated "wish" for this "ideal" model of care, but simultaneous scepticism regarding its implementation, based on their prior experiences of healthcare services. All participants were welcoming of the proposed model for dementia palliative care and were generally positive about palliative care as a concept relating to dementia. There was consensus that the model would allow people to live and die well with dementia, and reducing the carer burden would fulfil the wish to remain at home. However systemic changes in the healthcare system will be needed to facilitate a truly person-centred, holistic, individualised and flexible model of care.

Palliative care in dementia.

Dementia is one of the leading causes of death in the US. Approximately, 6 million elderly people in the US had dementia in 2020. Advanced dementia is complicated by multiple problems that can lead to distress in both the patient and their caregivers. With the increase in aging population, physicians will be expected to take care of patients with dementia. Palliative and hospice care can play an important part in helping to alleviate physical symptoms as well as address non-medical/spiritual needs. In this review article, we highlight the patient-centered approach to treat symptoms and patient's needs to improve their quality of life. We discuss the most important and persistent challenges in advanced dementia with the aim to provide excellent care at the end-of-life and caregiver experience. Data were identified by using PubMed, EBSCO, and Google Scholar databases (January 1980 to present) using the following search terms: dementia, palliative care, advanced dementia, and hospice care. The search was repeated using geriatrics, end-of-life, decision making, advanced care, capacity evaluation, nutrition, infections, pain management, dyspnea, delirium, de-prescribing, and spiritual care. Additional review of literature was undertaken using relevant references of identified articles. There are many missed opportunities to improve care in this vulnerable patient population that when addressed can lead to peaceful and dignified death.

Interprofessional collaboration in palliative dementia care

ABSTRACT Interprofessional collaboration (IPC) is essential for high-quality palliative care (PC) for persons with dementia. The aim of this scoping review was to identify IPC approaches in palliative dementia care and explore the elements constituting these approaches. We performed a search in PubMed, CINAHL, and PsychINFO using the Joanna Briggs Institute Reviewers’ manual and PRISMA guidelines, and conducted content analysis of the included articles. In total, 28 articles were included, which described 16 IPC approaches in palliative dementia care. The content analysis revealed three overall elements of these approaches: 1) collaborative themes, 2) collaborative processes, and 3) resources facilitating collaboration. Frequently reported collaborative themes embraced pain management and providing care in the dying phase. These themes were addressed through intertwined collaborative processes including communication, coordination, assessing and monitoring, and reflecting and evaluating. To ensure optimal IPC in palliative dementia care, various resources were required, such as PC knowledge, skills to manage symptoms, skills to communicate with collaborators, and a facilitating environment. In conclusion, the identified IPC approaches in palliative dementia care involve diverse collaborating professionals who mainly manage symptoms, prepare for the dying phase and require material and immaterial resources to enable optimal IPC in palliative dementia care.

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.

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. 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. 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. 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.

EMPOWERING BETTER END-OF-LIFE DEMENTIA CARE (EMBED-CARE): A DIGITAL CLINICAL DECISION SUPPORT FRAMEWORK

Abstract People with dementia experience a variety of unmet palliative care needs. There is a need to empower people with dementia, family carers and professionals, to be able to better assess and monitor needs, and manage symptoms. We aimed to co-design and evaluate acceptability, feasibility and implementation of an integrated model of palliative dementia care to support holistic assessment, decision making and management of needs for those living in community and residential care (EMBED-Care Framework).We used a co-design approach, using framework analysis to synthesize data from evidence reviews, routine data, and cohort study, we presented findings to a series of co-design workshops, to produce the Framework. The Framework consists of a holistic assessment; priority setting; and decision support using clinical decision support tools, delivered on an app. The holistic assessment identifies areas of concern and identify priorities of care, through a process of shared decision making. Each concern is linked to a decision support tool to support decision making and to address priorities. App alerts and reminders communicate concerns among teams and carers. We are testing the Framework in a 6-month feasibility study with two residential homes and two community settings in England. We are collecting outcomes including decisional conflict, satisfaction with care, and unmet needs. We are interviewing all users to explore acceptability and implementation. We will present development of the EMBED-Care Framework and preliminary findings from our feasibility study, focusing on the acceptability and lessons for implementation which can be applied to the wider dementia community and similar interventions.

P106: Palliative care for people with advanced dementia

Objective:Dementia is currently the seventh leading cause of death and one of the major causes of disability and dependency among elderly. In Taiwan, there are at least 300,000 people live with dementia. However, only 1.64% of people with dementia received palliative care. In this paper, we describe a real-world experience of palliative care for people with advanced dementia.Method:Case report.Result:Mrs. H, A 90-year-old illiterate woman, was referred to Home Care team after several admissions for urinary tract infection. Her past medical history included cerebral infarction with left hemiparesis 4 years ago. Over one year prior our first visit, her family had begun to notice a problem with her recent memory. Thorough investigation for dementia was arranged. She scored 11/30 on the Mini-Mental State Examination. Mixed Alzheimer’s and vascular dementia was impressed.The Home Care service consisted of a once-monthly visit by physician and nurse. In the first year of service, we delivered active directed treatment for dementia. We also discussed nonpharmacological approaches for dealing with physical and behavior symptoms in each visit.Then Mrs. H was hospitalized again due to fever and abdominal pain. Abdominal aortic aneurysm was diagnosed along with urinary tract infection. She had hypoactive delirium for two months after discharge. Meanwhile, Home Care team arranged a family meeting to discuss prognosis and appropriateness of palliative care. In the following two years, we focused on deprescribing and interventions for pain, dyspnea, eating problem, infection, and agitation to promote Mrs. H’s comfort and quality of life. Psychological support was crucial to facilitate continuity in carer and care setting. Mrs.H did not have burdensome transition anymore and passed away peacefully at home as her preference.Conclusion:The need for palliative care in dementia is anticipated to increase over the next decades in Taiwan. In the patient presented, Home Care team acknowledged and offered palliative care to help her to live as comfortably as possible until death and to help carers cope during the course. A multidisciplinary health care is highly recommended for complex needs in dementia.

A comparison of four dementia palliative care services using the RE-AIM framework

BackgroundLiving with a life-limiting illness, people with dementia benefit from palliative care which considers the holistic needs of the person and their family. However, little is known about how palliative care may be best provided to people living with dementia at home in the community. We examined four exemplary dementia palliative care services for people with dementia in the community, to see what activities they were providing, what were the commonalities and differences, and what lessons could be learned.MethodsA long-list of dementia palliative care services in Ireland, Northern Ireland, England, Scotland, and Wales, was identified through a survey, and four exemplar services were chosen based on criteria including: in operation >six months; provides identifiable activities; availability of routinely collected service data; not exclusively for people with dementia in final hours or days of life. Mixed-methods of data collection included interviews, focus-groups and surveys with service staff, surveys of service users, and routinely collected service data. The RE-AIM framework was used to describe and understand the sample of dementia palliative care services.ResultsThe four services had varied organisational structures and were led by different disciplines. However, they all provided common core activities including holistic and person-centred care, early advance care planning with service user involvement, carer support, integrated healthcare services, continuity of care, 24/7 support, bereavement support. All had needs-based referral criteria, accepting any age or dementia sub-type. All supported people with dementia to remain living at home and to have a comfortable, dignified death in their preferred place.ConclusionsAn effective dementia palliative care service may take different forms. Whether the service is dementia-led or Specialist Palliative Care-led, efficacy is associated with providing a range of key activities and implementing them effectively. The data collected strongly suggests the benefits of the dementia palliative care services to a person with dementia and their families and offers valuable insight into the key factors for the establishment and successful running of such services.

I want to be seen as myself: needs and perspectives of persons with dementia concerning collaboration and a possible future move to the nursing home in palliative dementia care

Introduction: Interprofessional collaboration (IPC) within and during movements between care settings is crucial for optimal palliative dementia care. The objective of this study was to explore the experiences of persons with dementia regarding collaboration with and between healthcare professionals (HCPs) and their perceptions of a possible future move to the nursing home (NH) in palliative dementia care. Method: We conducted a cross-sectional qualitative study and performed semi-structured interviews with a purposive sample of persons with dementia living at home (N = 18). Data analysis involved content analysis. Results: Our study demonstrated that even though most persons with dementia find it difficult to perceive the collaboration amongst HCPs, they could describe their perceived continuity of care (Theme 1. My perception of collaboration among HCPs). Their core needs in collaboration with HCPs were receiving information, support from informal caregivers, personal attention and tailored care (Theme 2. My needs in IPC). Regarding a possible future move to the NH, persons with dementia cope with their current decline, future decline and a possible future move to the NH (Theme 3. My coping strategies for a possible future move to the NH). They also prefer to choose the NH, and continue social life and activities in their future NH (Theme 4. My preferences when a NH becomes my possible future home). Conclusion: Persons with dementia are collaborative partners who could express their needs and preferences, if they are willing and able to communicate, in the collaboration with HCPs and a possible future move to the NH.

Dementia palliative care education and training for healthcare professionals: A scoping review protocol

Background: Global mortality rates from dementia continue to rise. Evidence suggests that there is limited provision of palliative care for people with dementia and this is a cause of grave concern. The coronavirus disease 2019 (COVID-19) pandemic has further exposed the inequalities of care for this vulnerable population. Proactive palliative care, delivered by multidisciplinary healthcare professionals (HCPs), can offer significant benefits to people with dementia. However, little is known about the components of effective education and training for HCPs who care for people with advancing dementia at end of life. Objective: The aim of this scoping review is to identify effective education and training interventions for HCPs, who care for people with advanced dementia approaching end of life. Inclusion criteria: Studies that used a palliative care educational intervention for HCPs working with patients with dementia will be included. Studies that explore undergraduate or postgraduate education and training in dementia palliative care for HCPs will be included. Study designs such as quantitative, qualitative, mixed method studies, and case studies will be included. Methods: The Joanna Briggs Institute (JBI) methodology for scoping reviews will be used for this review. The following databases will be searched: CINAHL, ERIC, Medline, SocIndex, PsycINFO. In addition, grey literature searches will be limited to the first 100 searches using Google Scholar and Open-Grey. Study selection will involve the reviewer screening titles and abstracts. Then, two independent reviewers will further assess the studies in full for those that meet the inclusion criteria. In line with the JBI framework, data will be extracted using a draft data extraction tool. This will facilitate a chronological narrative synthesis of results in line with the study's overall aim to identify effective education and training interventions for HCPs, who care for patients with dementia, nearing end of life.

A DEDICATED APPROACH TO PALLIATIVE DEMENTIA CARE

Abstract Nursing staff play a central role in the palliative care for people with dementia. Development of their palliative care competences may support timely recognition and addressing of individual needs of persons with dementia and their family caregivers in long term care. In the DEDICATED (Desired Dementia Care Towards End of Life) project, we aim to develop materials to support nursing staff in providing palliative dementia care. The first step of the project concerned a needs assessment, mapping the perspectives of nursing staff, family caregivers and people with dementia (scoping review, surveys and semi-structured interviews). Using these studies’ results as a starting point, an intervention (the DEDICATED approach) was built, using an iterative co-creation approach involving nursing staff and educators (N=12). These ‘ambassadors’ were also trained to disseminate the approach within their care teams and nursing curricula. First reactions from the pilot study regarding the DEDICATED-materials are positive and nurses and nurse educators are eager to use the materials (www.dedicatedwerkwijze.nl). Currently the DEDICATED-approach is being evaluated using a mixed methods pretest-posttest controlled design comparing three groups: a design group (12 wards), a test group (28 wards, 28 new-trained ambassadors) and a control group (12 wards). The main outcomes of study are e.g. self-efficacy, empowerment and engagement in providing palliative care for people with dementia. A secondary outcome involves longitudinal trends of the quality of dying of persons with dementia within the group.

76 HOW BLOGS SUPPORT THE TRANSFER OF KNOWLEDGE INTO PRACTICE IN THE FIELD OF DEMENTIA PALLIATIVE CARE: FACILITATORS AND BARRIERS

Abstract Background Blogging can help to maximise the impact of one’s work in academia and beyond by making research findings accessible for multiple knowledge users. As part of the knowledge exchange and dissemination activities of the Model for Dementia Palliative Care Project, this study explored stakeholders’ views of blogs as a means to translate research findings in the field of Dementia Palliative care. Methods A web-based survey was developed, piloted, and revised. It was distributed electronically via key dementia and palliative care organisations. Complete responses (N=128) were received from healthcare researchers (n=53), healthcare providers (n=46) and others with an interest in healthcare research (n=29). Data were analysed using descriptive statistics and content analysis Results The preferred methods of reviewing research findings were scientific papers, websites and news articles. Respondents read healthcare blogs “sometimes” (39.1%), with <19% reading them “often” or “very often”. Receiving an email notification might increase the likelihood of reading a new blog post for 83% of respondents. Barriers to engaging with blogs included lack of time, preference for other media, lack of awareness regarding available blogs, and concerns about the credibility and source of information. An appropriate length and the author of the blog were key features that encouraged engagement with a blog. Most respondents (37.7 % ‘Yes’ and 23.0% ‘Maybe’) would read Dementia Palliative care blogs by the research team. Conclusion Despite respondents choosing a scientific paper as their preferred method to consume research findings, many indicated an openness to reading blogs on their area of interest. Creating concise, relevant, and credible blogs, and suitably promoting them, could increase the impact and reach of healthcare research, such as in the emerging field of dementia palliative care, and thus promote translation of research findings into practice.

75 EVALUATING DEMENTIA PALLIATIVE CARE SERVICES ACROSS IRELAND AND THE UK USING THE RE-AIM FRAMEWORK

Abstract Background Dementia is a life-limiting illness, requiring a Palliative Care (PC) approach from diagnosis. In Ireland, People with Dementia (PwD) and their families rarely receive PC in a timely manner. This study aimed to evaluate five exemplar community-based dementia PC services across Ireland and the UK (as identified by key stakeholders), to inform a new service delivery model. Methods Data from semi-structured interviews and focus groups with 29 service providers, and service activity data (n=5), was evaluated using the RE-AIM framework. Results ‘Reach’ - Caseloads varied significantly between 3-154 active cases. Most services accepted self-referrals; all wanted earlier referrals. Factors influencing reach included co-location, dyadic participation, service flexibility, and others’ awareness of PC appropriateness and the service’s existence. ‘Effectiveness’ - All service users received holistic assessments, person-centred care, advanced care planning, continuity of care, improved service access and ‘care-for-the-carer’. Some services offered complimentary therapies, 24/7 phone support, and bereavement support; these were perceived to improve quality-of-life, comfort, and independence. ‘Adoption’ - Staff were highly invested; some provided their personal numbers to families. Outside staff were more willing to engage (refer/support) if shared governance, training was provided, or already familiar with dementia or the tools. Incentive programmes increased adoption rates. ‘Implementation ’ - All services evolved on an ad-hoc basis, with funding provided by local organisations, and a single ‘driving force’, typically a consultant/nurse. Services heavily relied on volunteers. Perceived “essential” elements included a dyadic approach, MDT involvement, open communication, forming relationships, reflective practices, dedicated staff with problem solving skills, and staff support/training. ‘Maintenance’ - All services continued after initial project funding; three increased their activities/reach over time. Conclusion Important features and facilitators of community-based dementia palliative care services have been identified. These results are informing the development of the novel Dementia Palliative Care model for use in Ireland (https://pallcare4dementia.com/).

Exploratory and confirmatory factor analysis of the questionnaire on Palliative Care for Advanced Dementia (qPAD) using a large sample of staff from Australian residential aged care homes.

The Questionnaire on Palliative Care for Advanced Dementia (qPAD) is increasingly being used to assess residential aged care workers' knowledge and attitudes about palliative care for people with dementia. The qPAD developers performed an exploratory factor analysis and assessed the internal consistency using a small sample. The aim of this study was to further assess the structural validity of the qPAD using a large sample of qPAD responses from staff who work in residential aged care homes in Australia. Data from 727 care staff who participated in an Australian dementia palliative care training project were used for exploratory factor analyses, assessment of internal consistency, and confirmatory factor analysis of the knowledge test and attitude scale components of the qPAD. The exploratory factor analysis of the knowledge test produced a four-factor solution. One item loaded weakly, and four items had cross-loadings. Factor labels for the knowledge test were difficult to define. Factor analysis of the attitude scale produced a three-factor structure with good internal consistency-Feeling valued and part of the care team (α=0.88), Family and team engagement (α=0.75) and Perceptions and beliefs (α=0.83). Confirmatory factor analysis indicated improvements in model fit were needed for both the knowledge test and attitude scale. The findings of this factor analysis differed from the original study. The attitude scale produced a three-factor structure, but the knowledge test requires further development due to weak and cross-loadings of several items, inadequate internal consistency of factors and poor model fit.

How blogs support the transfer of knowledge into practice in the field of dementia palliative care: a survey of facilitators and barriers

BackgroundBlogging can help to maximise the impact of one’s work in academia and beyond by making research findings accessible for multiple knowledge users, such as healthcare professionals and the public, as well as other researchers. As part of the knowledge exchange and dissemination activities of the Model for Dementia Palliative Care Project, this study explored stakeholders’ views of blogs as a means to translate research findings.MethodsA web-based survey was developed, piloted, and revised. It was distributed electronically via key dementia and palliative care organisations websites, newsletters, social media platforms, and within the staff mailing lists of five Universities in Ireland. Data were analysed using descriptive statistics and content analysis.ResultsComplete responses were received from 128 participants. The majority of respondents were healthcare researchers (n = 53), followed by healthcare providers (n = 46). The preferred methods of reviewing research findings were scientific papers, websites and news articles. Respondents read healthcare blogs “sometimes” (39.1%), with < 19% reading them “often” or “very often”. Receiving an email notification might increase the likelihood of reading a new blog post for 83% of respondents. Barriers to engaging with blogs included lack of time, preference for other media, lack of awareness regarding available blogs, and concerns about the credibility and source of information. An appropriate length and the author of the blog were key features that encouraged engagement with a blog.ConclusionsDespite respondents choosing a scientific paper as their preferred method to consume research findings, many indicated an openness to reading blogs on their area of interest. Creating concise, relevant, and credible blogs, and suitably promoting them, could increase the impact and reach of healthcare research, such as in the emerging field of dementia palliative care, and thus promote translation of research findings into practice.

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

BackgroundResearch 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.MethodsWe 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. The interviews were audio-recorded and transcribed verbatim. The data were analyzed thematically, and the researchers developed common themes referring to their original studies.ResultsFourteen qualitative researchers representing 14 cross-cultural studies covering qualitative data of 121 people with dementia and 292 family caregivers. The researchers and data were from eight countries UK, The Netherlands, Japan, Portugal, Germany, Canada, Brazil, and Ireland. Three focus groups, five individual interviews, and video-conferencing were conducted and feedback on multiple iterations was gained by 190 emails between May 2019 and April 2020 until consensus was achieved. Nine cross-culturally common themes emerged from the discussions and shared interpretation of the data of persons with dementia and family caregivers. Three represent basic needs: “Pain and Symptoms Controlled,” “Being Provided Basic Care,” and “A Place like Home.” Other themes were “Having Preferences Met,” “Receiving Respect as a Person,” “Care for Caregivers,” “Identity Being Preserved,” “Being Connected,” and “Satisfaction with Life and Spiritual Well-being.” “Care for Caregivers” showed the greatest difference in emphasis across cultures. Good relationships were essential in all themes.ConclusionsThe common cross-cultural themes comprise a framework underpinned by value placed on personhood and dignity, emphasizing that interdependency through relationships is essential to promote a good end of life with dementia. These themes and valuing the importance of relationships as central to connecting the themes could support care planning and further development of a dementia palliative care model.Trial registrationThe Graduate School and Faculty of Medicine Kyoto University (R1924–1).Supplementary InformationThe online version contains supplementary material available at 10.1186/s12904-022-00982-9.

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.

Interprofessional collaboration in palliative dementia care through the eyes of informal caregivers.

A qualitative study was conducted to examine the experiences of informal caregivers of persons with dementia pertaining interprofessional collaboration with and among healthcare professionals in home care (HC), nursing homes and during home to nursing home transitions in palliative care. Semi-structured interviews were performed with bereaved informal caregivers. Data were analysed using a critical realist approach. The two main themes that emerged were: (1) Informal caregivers’ roles in interprofessional collaboration with healthcare professionals and (2) Informal caregivers’ perception of interprofessional collaboration among healthcare professionals. Informal caregivers’ roles were identified in three collaboration processes: information exchange, care process and shared decision-making. Interprofessional collaboration among healthcare professionals was more perceptible on the collaboration outcome level (e.g. being up to date with the health status of the person with dementia; acting proactive, being adequate and consistent in the care process; and giving a warm welcome) than on the collaboration processes level (e.g. communicating and being involved in team processes). Our study revealed that intrinsic and extrinsic factors and interprofessional collaboration among healthcare professionals affected informal caregivers’ collaborative roles. In summary, our study showed that informal caregivers have important roles as team members in the continuity and quality of palliative care for persons with dementia.