Search

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. Method In this cross-sectional, mixed methods study, we interviewed 150 family carers and assessed their dementia knowledge using the Dementia Knowledge Assessment Scale (DKAS). Linear regression analyses were used to examine whether health literacy, previous experiences of dementia, support group attendance and sociodemographic characteristics predicted knowledge. Sixteen carers also completed qualitative interviews which explored unmet information needs. Transcripts and field notes were thematically analysed. Results Most participants were partners (47%) or adult children (48%) and cared for someone with severe (32%) or moderate (43%) dementia. Mean DKAS scores were 34.8/50 (SD = 7.0, range = 17–48) reflecting 8/25 incorrect answers. Backwards elimination regression found greater dementia knowledge was associated with greater health literacy for appraising information (coef 3.48, 95% CI (1.38, 5.58); p = 0.001) and more years of education (coef 0.39, 95% CI (0.12, 0.65); p = 0.004). Although not significant, knowledge was slightly lower in those who attended a support group, and a trend was found between ability to understand health information and knowledge. Only 39% accurately identified dementia as life shortening, indicating notable gaps in knowledge. Four qualitative themes were identified; arm yourself with information, ability to steer through information, other experience of dementia can be helpful and the importance of relationships with health care professionals. Conclusions In an information age, vast amounts of information are available, but this can bring difficulties. Carers with more years of education and higher health literacy knew more about dementia. Professionals should consider how carers with lower health literacy can be supported through provision of timely, relevant information.

Summary This article examines how malaria control in Africa became a neoliberal enterprise that privileged market mechanisms as an ideal way to disseminate health interventions. It does so by tracking efforts to sell insecticide-treated nets on the continent as these tools transformed from cheap stopgap measures intended for primary health care programmes in the early 1980s to a major target of global health aid by the 2000s. Even though experience showed that selling insecticide-treated nets to African populations did not lead to high levels of uptake, malaria programme leaders continued to tinker with market mechanisms to scale up the intervention in line with the interests of prominent donors. Narrating this history as it unfolded across different African countries, this paper shows that the neoliberalisation of malaria control was a contingent and fragmented process that depended as much on local experiences with particular health technologies as it did on high-level policy-making.

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. In particular, we focussed on key concerns and areas of decision making at the end of life. Methods We conducted a qualitative study using semi-structured interviews with eight telephone support line staff from two UK based charities who support carers of people living with dementia and those at the end of life. Interviews were conducted in the first wave of the pandemic in England in May–June 2020. Results An overarching theme of uncertainty and reactivity during a crisis was identified, and within this, five main themes were identified: concerns about care transitions, uncertainty in engaging support and help, pandemic-motivated care planning, maintaining the wellbeing of the person living with dementia, and trust, loss of agency and confusion. Conclusions Family carers may be reluctant to seek support because of fear of what may happen to their relative, which may include hospitalisation and becoming ill with COVID-19, care home placement, or not being able to be with a relative at the end of life. In some cases, a lack of trust has developed, and instead carers are seeking support from alternative services they trust such as nationally known charities.This study was used to inform the development of a decision aid to support family carers making decisions about care for their relative with dementia during the pandemic, who the lack the capacity to make their own decisions.

open access article 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. Methods Following a systematic process, we developed a decision aid using coproduction methods and matrices to synthesize data from a systematic review and qualitative interviews with people living with dementia and family carers. Data were presented to coproduction workshops of people living with dementia, family carers, practitioners and professionals. Development was guided by the Ottawa Decision Support Framework and a modified Interprofessional Shared Decision-Making model. Results The decision aid covers four decision areas: (1) changes in care; (2) eating and drinking difficulties; (3) everyday well-being; and (4) healthcare, tests and medication. We present an interactive decision aid, using a variety of approaches including written text, Frequently Asked Questions, top tips and illustrative quotes from people living with dementia and family carers. Conclusion This is the first decision aid that focusses on multiple decisions towards the end-of-life in dementia care. The process offers a template for others to develop decision aids or similar interventions, and how to include people living with dementia in coproduction. Patient or Public Contribution Family carers provided feedback on data collection, data analysis and the decision aid, and one is a coauthor. People living with dementia and family carers were integral to the coproduction workshops.

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. Aim: To identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia. Design: Systematic review and narrative synthesis. Data Sources: Electronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia. Results: Thirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life. Conclusion: End-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.

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. Setting Community. Methods We conducted semi-structured interviews with 19 people living with mild dementia. Interviews were transcribed verbatim and analysed thematically. Results Five themes were identified: (i) awareness of eating and drinking problems; (ii) food and drink representing an individual’s identity and agency; (iii) delegating later decisions about eating and drinking to family carers; (iv) acceptability of eating and drinking options; and (v) eating and drinking towards the end of life. For people living with mild dementia, possible later eating and drinking problems could feel irrelevant and action may be postponed until they occur. Fears of being a burden to family and of being treated like a child may explain reluctance to discuss such future problems. People living with mild dementia might wish to preserve their agency and maintain good quality of life, rather than be kept alive at later stages by artificial nutrition and hydration. Conclusion For people with mild dementia, eating and drinking problems may seem unrelated to them and so get left undiscussed. Negative connotations regarding eating and drinking problems may hinder the discussion. The optimal time to discuss possible future problems with eating and drinking with people with mild dementia may need an individual approach.

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. Food/drink had strong links to identity, culture and emotions. Providing culturally familiar foods, celebrating traditional festivals and supporting previous food-related roles promoted reminiscence, which encouraged the people living with dementia to eat and drink, as did social interactions, although these could lead to distress in those with more advanced dementia. Food choices were also influenced by carer strain, generational differences and the impact of health conditions. Despite a strong sense of duty to care for relatives at home, there was low awareness of community support services. The carers expressed a need for culturally tailored support for managing dementia-related eating and drinking difficulties at home. Healthcare professionals must provide contextually relevant advice to carers, being mindful of how cultural backgrounds can affect dietary choices.

To synthesize the qualitative evidence of the views and experiences of people living with dementia, family carers, and practitioners on practice related to nutrition and hydration of people living with dementia who are nearing end of life.Systematic review and narrative synthesis of qualitative studies.MEDLINE, Embase, PsycINFO, CINAHL.Databases were searched for qualitative studies from January 2000-February 2020. Quantitative studies, or studies reporting on biological mechanisms, assessments, scales or diagnostic tools were excluded. Results were synthesized using a narrative synthesis approach with thematic analysis.Twenty studies were included; 15 explored the views of practitioners working with people living with dementia in long-term care settings or in hospitals. Four themes were developed: challenges of supporting nutrition and hydration; balancing the views of all parties involved with 'the right thing to do'; national context and sociocultural influences; and strategies to support nutrition and hydration near the end of life in dementia.The complexity of supporting nutrition and hydration near the end of life for someone living with dementia relates to national context, lack of knowledge, and limited planning while the person can communicate.This review summarizes practitioners and families' experiences and highlights the need to include people living with dementia in studies to help understand their views and preferences about nutrition and hydration near the end of life; and those of their families supporting them in the community. The review findings are relevant to multidisciplinary teams who can learn from strategies to help with nutrition and hydration decisions and support.目的: 综合痴呆患者、家庭护理员以及执业医师对与痴呆患者临终前的营养和水分补充相关实践的观点和经验的定性证据。 设计: 对定性研究进行系统评估和叙事综合。 数据来源: MEDLINE、Embase、PsycINFO和CINAHL。 评估方法: 对数据库自2000年1月至2020年2月期间的数据进行检索。不包括定量研究或生物机制的研究报告、评估、量表或诊断工具。使用叙事综合方法和主题分析,以综合汇总结果。 结果: 共纳入20项研究。其中,15项探讨了在长期护理环境或医院为痴呆患者服务的执业医师的观点。其中,4项主题探讨了:提供营养和水分补充所面临的挑战;平衡‘正确做法’涉及的各方观点;国家背景和社会文化影响;以及为痴呆患者在临终前提供营养和水分补充的策略。 结论: 为痴呆患者在临终前提供营养和水分补充的复杂性,与国家背景、知识匮乏和在患者可以交流时的有限规划有关。 影响: 本评估概述了执业医师和家庭的经验,强调了将痴呆患者纳入研究的必要性,以帮助理解他们在临终时的观点和对营养和水分补充的偏好;以及那些在社区中支持他们的家庭。评估研究结果与多个专业团队有关,其可从策略中进行学习,以帮助做出营养和水分补充的决定和支持。.

Objectives: To explore current practice and the role of UK care homes and Admiral Nurses in helping people living with dementia and their family carers prepare for end‐of‐life. Methods: We conducted an online survey with all UK Admiral Nurses (59% response rate) and a random sample of Gold Standards Framework accredited care homes in England and Wales (38% response rate). We used descriptive statistics to report survey findings. Results: While respondents commonly discussed the progressive nature of dementia with people living with dementia and family carers, they less frequently spoke to people with dementia or carers about the nature of dementia as life shortening, terminal, or a disease you can die from. Admiral Nurses highlighted that where service models reduced continuity of care, opportunities for ongoing discussion and developing relationships that supported these discussions were reduced. Admiral Nurses and care homes raised concerns about conversations being left too late, when the person with dementia no longer had capacity to engage. There was a high level of agreement with all European Association of Palliative Care and National Institute for Health and Care Excellence (NICE) statements presented regarding end‐of‐life care planning and discussions. Conclusions: Our survey of care homes and Admiral Nurses, combined with findings from our previous survey of UK memory services, increases our understanding of how services help people with dementia and family carers prepare for end‐of‐life. We found fragmentation across the service system, lack of continuity, and tensions regarding when these conversations should be initiated and by whom.

Objective:Nearly half of care home residents with advanced dementia have clinically significant agitation. Little is known about costs associated with these symptoms toward the end of life. We calculated monetary costs associated with agitation from UK National Health Service, personal social services, and societal perspectives.Design:Prospective cohort study.Setting:Thirteen nursing homes in London and the southeast of England.Participants:Seventy-nine people with advanced dementia (Functional Assessment Staging Tool grade 6e and above) residing in nursing homes, and thirty-five of their informal carers.Measurements:Data collected at study entry and monthly for up to 9 months, extrapolated for expression per annum. Agitation was assessed using the Cohen-Mansfield Agitation Inventory (CMAI). Health and social care costs of residing in care homes, and costs of contacts with health and social care services were calculated from national unit costs; for a societal perspective, costs of providing informal care were estimated using the resource utilization in dementia (RUD)-Lite scale.Results:After adjustment, health and social care costs, and costs of providing informal care varied significantly by level of agitation as death approached, from £23,000 over a 1-year period with no agitation symptoms (CMAI agitation score 0–10) to £45,000 at the most severe level (CMAI agitation score >100). On average, agitation accounted for 30% of health and social care costs. Informal care costs were substantial, constituting 29% of total costs.Conclusions:With the increasing prevalence of dementia, costs of care will impact on healthcare and social services systems, as well as informal carers. Agitation is a key driver of these costs in people with advanced dementia presenting complex challenges for symptom management, service planners, and providers.

Objectives\ud Globally, the number of people with dementia who have palliative care needs will increase fourfold over the next 40 years. The Empowering Better End‐of‐Life Dementia Care (EMBED‐Care) Programme aims to deliver a step change in care through a large sequential study, spanning multiple work streams.\ud \ud Methods\ud We will use mixed methods across settings where people with dementia live and die: their own homes, care homes, and hospitals. Beginning with policy syntheses and reviews of interventions, we will develop a conceptual framework and underpinning theory of change. We will use linked data sets to explore current service use, care transitions, and inequalities and predict future need for end‐of‐life dementia care. Longitudinal cohort studies of people with dementia (including young onset and prion dementias) and their carers will describe care transitions, quality of life, symptoms, formal and informal care provision, and costs. Data will be synthesised, underpinned by the Knowledge‐to‐Action Implementation Framework, to design a novel complex intervention to support assessment, decision making, and communication between patients, carers, and inter‐professional teams. This will be feasibility and pilot tested in UK settings. Patient and public involvement and engagement, innovative work with artists, policymakers, and third sector organisations are embedded to drive impact. We will build research capacity and develop an international network for excellence in dementia palliative care.\ud \ud Conclusions\ud EMBED‐Care will help us understand current and future need, develop novel cost‐effective care innovations, build research capacity, and promote international collaborations in research and practice to ensure people live and die well with dementia.

Eating and drinking difficulties are common in dementia, but little is known about the experiences of ethnic minority groups managing these difficulties at home. We undertook qualitative semi-structured interviews, exploring the meaning of food, the impact of dementia on eating and drinking and carers’ experiences of support. Interviews were audio-recorded and transcribed verbatim. We interviewed 17 carers and people with dementia from ethnic minority backgrounds, using reflexive thematic analysis to analyse data. Food/drink had strong links to identity, culture and emotions. Providing culturally familiar foods, celebrating traditional festivals and supporting previous food-related roles promoted reminiscence, which encouraged people with dementia to eat and drink, as did social interactions. However, these strategies sometimes led to distress in those with more advanced dementia. Food choices were also influenced by carer strain, generational differences and the impact of health conditions. Despite a strong sense of duty to care for relatives at home, there was low awareness of community support services. Carers expressed a need for culturally tailored support for managing dementia-related eating and drinking difficulties at home. Healthcare professionals must provide contextually relevant advice to carers, being mindful of how cultural backgrounds can affect dietary choices.

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. Methods This was a mixed methods cross-sectional study. Family carers of people with dementia ( n = 150) completed a structured interview with validated scales, alongside questions about death preparedness and advance decisions. A sub-sample ( n = 16) completed qualitative interviews exploring their experiences of planning for end of life. We fitted logistic regression models to explore associations with preparedness, and thematically analysed qualitative data. Results We addressed practical and emotional preparation separately for 143 participants. Fifty seven percent of participants were very practically prepared for death, while only 29% were very emotionally prepared. Male carers were more likely than female carers to report being very emotionally and practically prepared. Higher engagement with healthcare professionals was associated with feeling very practically prepared; although we found that formal discussions of end of life care issues with healthcare professionals did not impact carers’ feelings of preparation. Higher levels of dementia severity and carer depression were associated with feeling very emotionally prepared. Three qualitative themes related to practical and emotional preparation were identified: (1) ambiguity and uncertainty; (2) support from the system; and (3) how death is perceived by the carer. Conclusions While most carers felt practically prepared for death, emotional preparation was much lower. Further research is needed to understand how engagement with healthcare professionals or other forms of social or emotional support could help carers, particularly female carers, to emotionally prepare for their relative’s death.

BackgroundKeeping people living with advanced dementia in their usual place of residence is becoming a key governmental goal but to achieve this, family carers and health care professionals must negotiate how to provide optimal care. Previously, we reported a realist analysis of the health care professional perspective. Here, we report on family carer perspectives. We aimed to understand the similarities and differences between the two perspectives, gain insights into how the interdependent roles of family carers and HCPs can be optimised, and make recommendations for policy and practice.MethodQualitative study using a realist approach in which we used the criteria from guidance on optimal palliative care in advanced dementia to examine key contexts, mechanisms and outcomes highlighted by family carers.ResultsThe themes and views of family caregivers resonate with those of health care professionals. Their overlapping anxieties related to business-driven care homes, uncertainty of families when making EOL decisions and the importance of symptom management referring to contexts, mechanisms and outcomes, respectively. Contexts specific to family carers were ad hoc information about services, dementia progression and access to funding. Not all family carers identified dementia as terminal, but many recognised the importance of continuity of care and knowing the wishes of the person with dementia. New mechanisms included specific resources for improving EOL care and barriers to discussing and planning for future care. Family carers identified the importance of comfort, being present, the meeting of basic care needs and feeling the right decisions have been made as good outcomes of care.ConclusionsFamily carers and health care professionals share similar concerns about the challenges to good EOL dementia care. Better understanding of the effects of dementia at the advanced stages would improve confidence in EOL care and reduce uncertainty in decision making for family carers and health care professionals.

Background and aim The European Association of Palliative Care recommends that family carers need education on the progression of dementia. This systematic review aimed to explore whether interventions incorporating education regarding the progressive nature of dementia increased carers’ understanding of dementia and improved mental health and burden. Method MEDLINE, PsycINFO and CINAHL were searched to April 2018. Randomised controlled trials with samples of family carers of someone with dementia were eligible. Included interventions involved a component aimed to increase the carer’s understanding of the progression of dementia. Outcomes of interest included: knowledge of dementia, depression, burden and pre-death grief. Results Searches identified 3221 unique citations of which 11 studies were eligible for review. Interventions ranged from 4 to 16 sessions of which 1 to 3 sessions focused on the progression of dementia. Knowledge: Two studies evaluated carers’ knowledge of dementia. One found no difference between the trial arms immediately after the intervention or three months later. The second found a significant intervention effect at the end of the intervention but not at three-month follow-up. Depression: Seven studies evaluated intervention effects on depression. Meta-analysis of three trials showed significant differences in mean follow-up scores favouring intervention over control. The remaining four studies did not show differences in depression between intervention and control groups. Burden: Nine studies evaluated burden and were examined in two meta-analyses (mean scores at follow-up and mean change scores from baseline to follow-up), neither of which found a benefit for intervention over control. Using the grading of recommendations assessment, development and evaluation system, we judged the quality of evidence to be very low for depression and low for burden, knowledge and pre-death grief, reducing our confidence in any of the effect estimates. Conclusion The evidence was not sufficient to support or refute the effectiveness of education on progression of dementia on carers’ knowledge and mental health.

Background People living with dementia may experience difficulties with eating and drinking, affecting their nutrition and hydration throughout the dementia trajectory. Such difficulties increase towards the end-of-life causing a strain on family carers. The aim of this study was to understand the needs of family carers and professionals supporting the person with dementia with nutrition and hydration towards the end-of-life and the strategies used to manage these challenges. Methods Forty-one semi-structured interviews with family carers (n = 21) and professionals (n = 20) were conducted in London and surrounding areas in 2019–20 to explore their experiences. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis methods. Results Five themes were identified: family carers struggling before seeking help, perceived priorities of care, professionals’ support and educational roles, nutrition and hydration challenges, and strategies. Family carers often find it hard to adapt to the changing nutrition and hydration challenges associated with the progression of dementia. Comfort becomes the focus of care instead of nutrition once the approach of the end of life is accepted. Professionals and family carers need to work together to better respond to changing needs and may be able to learn from one another. Physical impairments also impact on initial cognitive difficulties affecting individuals’ nutrition and hydration needs towards the end-of-life. Flexibility and creativity are key to adapt to these changing needs towards the end-of-life. Conclusions We need to establish how and when is best to hold discussions with family carers about changes in nutrition and hydration associated with the progression of dementia. Professional support to understand the transition towards care provision that becomes more focused on ensuring comfort and enjoyment towards the end-of-life may be helpful to family carers. The components of this and its acceptability need to be explored as well as professional capability and capacity.

Background Family carers often struggle to support relatives living with dementia with nutrition and hydration towards the end-of-life. The aim of this study was to co-design with family carers and professionals an information resource to support family carers with this task. Methods This study consisted of four phases: 1) qualitative systematic review; 2) a scoping review of existing resources; 3) 61 qualitative interviews with people with dementia, professionals, and family carers; 4) data synthesis and co-design development of an information resource. We constructed a matrix synthesising the key findings from phases 1–3, devising themes of the key content across the evidence and providing summaries from each source of evidence. The matrix provided a transparent pathway of the evidence and content for the design process. For the co-design phase 18 participants were recruited, 9 family carers and 9 professionals, split into two mixed groups. Four co-design workshops were conducted (two with each group) to develop the resource. During the workshops participants were presented with a summary of results from the matrix. Using modified nominal group processes and a series of tasks including categorisation and ranking we produced an initial prototype of the resource. The prototype was refined in subsequent co-design meetings and via email with individual participants. Results The main areas covered within the resource include: eating and drinking difficulties in dementia; end of life; managing swallowing difficulties; points to discuss with professionals in future appointments; support for family carers and; further resources. Information is presented in a booklet with a mix of formats including: diagrams; quotes; top tips; flow charts; and visual images. Conclusions This practical resource is the first to focus on nutrition and hydration towards the end-of-life in dementia care. This study provides a transparent stepwise approach to developing interventions, key for future similar studies.

The COVID-19 global pandemic has had a significant impact in the way services are accessed and perceived by patients and their carers. Trust in services has shifted, and relationships with healthcare professionals have been affected, with carers now seeking alternative and more accessible sources of support. The aim of this paper is to explore the challenges and concerns including issues around trust that carers of people living with dementia and terminal illness have brought to support helplines, the decisions they are having to make, and the impact that the pandemic has had on end of life care. Eight helpline support workers were recruited from the Dementia UK and Marie Curie organisations, and semi-structured qualitative interviews were conducted through video calls on Microsoft Teams. Interviews were recorded with participants’ consent and transcribed and checked via the Microsoft Stream automated system. The data was analysed by means of thematic analysis on NVIVO 11. Interview data was coded according to the point of time in the pandemic; early, later, or general. It was found that issues of trust, perceived loss of agency and confusion regarding government guidelines were expressed from the beginning of the pandemic to the current day. These stemmed from situations including care within hospitals and care homes, particularly due to a lack of communication from the aforementioned about the welfare of their relatives, and choices being removed from carers about their relatives’ discharge pathways. There were also concerns raised about the rapidly and constantly changing guidelines for vulnerable people during the pandemic, with carers seeking information and reassurance from charity helplines rather than authority figures and the government.

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. Four themes were identified: caregivers accessing and seeking help, perceived priorities of care, professionals' supportiveness and educational role, and strategies. Caregivers often struggle as they are not aware of the eating and drinking difficulties associated with dementia's progression. Care can change over time with families prioritising a person's comfort towards the end of life rather than ensuring a particular level of nutrition. Mutual support is required by both professionals and caregivers to enhance the care of the person living with dementia. Cognitive difficulties are often behind initial eating and drinking challenges in dementia, whereas physical challenges take over towards the later stages. Flexibility and creativity are key to adapting to changing needs. There is a need to raise awareness of the eating and drinking challenges associated with the progression of dementia. Professionals can help caregivers embark on the transition towards focussing on comfort and enjoyment of eating and drinking near the end of life rather than nutrition. This is particularly relevant for those caring for a relative living at home. Caregivers' input is needed to tailor professionals' recommendations.

Objectives:To develop a staff training intervention for agitation in people with severe dementia, reaching end-of-life, residing in nursing homes (NHs), test feasibility, acceptability, and whether a trial is warranted.Design:Feasibility study with pre- and post-intervention data collection, qualitative interviews, and focus groups.Setting:Three NHs in South East England with dementia units, diverse in terms of size, ownership status, and location.Participants:Residents with a dementia diagnosis or scoring ≥2 on the Noticeable Problems Checklist, rated as “severe” on Clinical Dementia Rating Scale, family carers, and staff (healthcare assistants and nurses).Intervention:Manualized training, delivered by nonclinical psychology graduates focusing on agitation in severe dementia, underpinned by a palliative care framework.Measurements:Main outcomes were feasibility of recruitment, data collection, follow-up, and intervention acceptability. We collected resident, family carer, and staff demographics. Staff provided data on resident’s agitation, pain, quality of life, and service receipt. Staff reported their sense of competence in dementia care. Family carers reported on satisfaction with end-of-life care. In qualitative interviews, we explored staff and family carers’ views on the intervention.Results:The target three NHs participated: 28 (49%) residents, 53 (74%) staff, and 11 (85%) family carers who were eligible to participate consented. Eight-four percent of staff attended ≥3 sessions, and we achieved 93% follow-up. We were able to complete quantitative interviews. Staff and family carers reported the intervention and delivery were acceptable and helpful.Conclusions:The intervention was feasible and acceptable indicating a larger trial for effectiveness may be warranted.

Objectives:Family caregivers of people with dementia can experience loss and grief before death. We hypothesized that modifiable factors indicating preparation for end of life are associated with lower pre-death grief in caregivers.Design:Cross-sectional.Setting:Caregivers of people with dementia living at home or in a care home.Participants:In total, 150 caregivers, 77% female, mean age 63.0 (SD = 12.1). Participants cared for people with mild (25%), moderate (43%), or severe dementia (32%).Measurements:Primary outcome: Marwit-Meuser Caregiver Grief Inventory Short Form (MMCGI-SF). We included five factors reflecting preparation for end of life: (1) knowledge of dementia, (2) social support, (3) feeling supported by healthcare providers, (4) formalized end of life documents, and (5) end-of-life discussions with the person with dementia. We used multiple regression to assess associations between pre-death grief and preparation for end of life while controlling for confounders. We repeated this analysis with MMCGI-SF subscales (“personal sacrifice burden”; “heartfelt sadness”; “worry and felt isolation”).Results:Only one hypothesized factor (reduced social support) was strongly associated with higher grief intensity along with the confounders of female gender, spouse, or adult child relationship type and reduced relationship closeness. In exploratory analyses of MMCGI-SF subscales, one additional hypothesized factor was statistically significant; higher dementia knowledge was associated with lower “heartfelt sadness.”Conclusion:We found limited support for our hypothesis. Future research may benefit from exploring strategies for enhancing caregivers’ social support and networks as well as the effectiveness of educational interventions about the progression of dementia (ClinicalTrials.gov ID: NCT03332979).

IntroductionCOVID-19 as a pandemic has disproportionately affected older adults, including those with dementia. The effects on health and social care systems has 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. In light of this, a decision-making tool to help families of persons with dementia was developed using a combination of qualitative data and evidence synthesis.ObjectivesTo develop a decision-aid using a combination of assessment and evidence-gathering methods for families of persons with dementia.MethodsSemi-structured interviews with helpline staff from national end-of-life and supportive care organisations formed the basis of the tool design. Co-design with people living with dementia, current and former carers and experts in general practice and social care shaped the next stage. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken.ResultsOutput from interviews covered many topics, including trust, agency and confusion in making decisions in the context of COVID-19. The rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision-making.ConclusionsCombining different sources and forms of evidence was efficient and valuable in creating a novel decision-making tool for persons with dementia and their families within the context of COVID-19. The decision-aid covered care planning, caregiver support systems, access to information and contingency considerations. Upon publication, the tool was adopted by NHS England and other leading healthcare organisations.DisclosureNo significant relationships.

Background: Increasing number of people are dying with advanced dementia. Comfort and quality of life are key goals of care. Aims: To describe (1) physical and psychological symptoms, (2) health and social care service utilisation and (3) care at end of life in people with advanced dementia. Design: 9-month prospective cohort study. Setting and participants: Greater London, England, people with advanced dementia (Functional Assessment Staging Scale 6e and above) from 14 nursing homes or their own homes. Main outcome measures: At study entry and monthly: prescriptions, Charlson Comorbidity Index, pressure sore risk/severity (Waterlow Scale/Stirling Scale, respectively), acute medical events, pain (Pain Assessment in Advanced Dementia), neuropsychiatric symptoms (Neuropsychiatric Inventory), quality of life (Quality of Life in Late-Stage Dementia Scale), resource use (Resource Utilization in Dementia Questionnaire and Client Services Receipt Inventory), presence/type of advance care plans, interventions, mortality, place of death and comfort (Symptom Management at End of Life in Dementia Scale). Results: Of 159 potential participants, 85 were recruited (62% alive at end of follow-up). Pain (11% at rest, 61% on movement) and significant agitation (54%) were common and persistent. Aspiration, dyspnoea, septicaemia and pneumonia were more frequent in those who died. In total, 76% had ‘do not resuscitate’ statements, less than 40% advance care plans. Most received primary care visits, there was little input from geriatrics or mental health but contact with emergency paramedics was common. Conclusion: People with advanced dementia lived with distressing symptoms. Service provision was not tailored to their needs. Longitudinal multidisciplinary input could optimise symptom control and quality of life.

Our successes in improving life expectancy has led to increased years of life lived with multimorbidity and dementia with increased support needs. Much of the support given to frail older people is provided by family and informal support networks with significant impact on their physical, psychological, and financial well-being. Demographic and societal changes are reducing the capacity of family to offer this care. Formal home-based, center-based, and long-term/residential/nursing home care services are predominately provided by untrained care staff working under supervision from nursing staff. Difficulties recruiting and retaining these staff is leading to major challenges to meeting the needs of older people (Chenoweth et al., 2010). This volume contains a number of studies focusing on ways to improve care provided by these services for frail older people. The approach underpinning these papers and many perspectives of good quality care for older people is the need to be person-centered where the older person identifies their own goals for care and assessment of need, employing a holistic and strength-based approach incorporating their interests, values, and capacities (Vernooij-Dassen and Moniz-Cook, 2016).

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. Objectives To assess the effectiveness and safety of enteral tube feeding for people with severe dementia who develop problems with eating and swallowing or who have reduced food and fluid intake. Search methods We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group's register, MEDLINE, Embase, four other databases and two trials registers on 14 April 2021. Selection criteria We included randomised controlled trials (RCTs), or controlled non-randomised studies. Our population of interest was adults of any age with a diagnosis of primary degenerative dementia of any cause, with severe cognitive and functional impairment, and poor nutritional intake. Eligible studies evaluated the effectiveness and complications of enteral tube feeding via a nasogastric or gastrostomy tube, or via jejunal post-pyloric feeding, in comparison with standard care or enhanced standard care, such as an intervention to promote oral intake. Our primary outcomes were survival time, quality of life, and pressure ulcers. Data collection and analysis Three review authors screened citations and two review authors assessed full texts of potentially eligible studies against inclusion criteria. One review author extracted data, which were then checked independently by a second review author. We used the 'Risk Of Bias In Non-randomised Studies of Interventions' (ROBINS-I) tool to assess the risk of bias in the included studies. Risk of confounding was assessed against a pre-agreed list of key potential confounding variables. Our primary outcomes were survival time, quality of life, and pressure ulcers. Results were not suitable for meta-analysis, so we presented them narratively. We presented results separately for studies of percutaneous endoscopic gastrostomy (PEG) feeding, nasogastric tube feeding and studies using mixed or unspecified enteral tube feeding methods. We used GRADE methods to assess the overall certainty of the evidence related to each outcome for each study. Main results We found no eligible RCTs. We included fourteen controlled, non-randomised studies. All the included studies compared outcomes between groups of people who had been assigned to enteral tube feeding or oral feeding by prior decision of a healthcare professional. Some studies controlled for a range of confounding factors, but there were high or very high risks of bias due to confounding in all studies, and high or critical risks of selection bias in some studies. Four studies with 36,816 participants assessed the effect of PEG feeding on survival time. None found any evidence of effects on survival time (low-certainty evidence). Three of four studies using mixed or unspecified enteral tube feeding methods in 310 participants (227 enteral tube feeding, 83 no enteral tube feeding) found them to be associated with longer survival time. The fourth study (1386 participants: 135 enteral tube feeding, 1251 no enteral tube feeding) found no evidence of an effect. The certainty of this body of evidence is very low. One study of PEG feeding (4421 participants: 1585 PEG, 2836 no enteral tube feeding) found PEG feeding increased the risk of pressure ulcers (moderate-certainty evidence). Two of three studies reported an increase in the number of pressure ulcers in those receiving mixed or unspecified enteral tube feeding (234 participants: 88 enteral tube feeding, 146 no enteral tube feeding). The third study found no effect (very-low certainty evidence). Two studies of nasogastric tube feeding did not report data on survival time or pressure ulcers. None of the included studies assessed quality of life. Only one study, using mixed methods of enteral tube feeding, reported on pain and comfort, finding no difference between groups. In the same study, a higher proportion of carers reported very heavy burden in the enteral tube feeding group compared to no enteral tube feeding. Two studies assessed the effect of nasogastric tube feeding on mortality (236 participants: 144 nasogastric group, 92 no enteral tube feeding). One study of 67 participants (14 nasogastric, 53 no enteral tube feeding) found nasogastric feeding was associated with increased mortality risk. The second study found no difference in mortality between groups. The certainty of this evidence is very low. Results on mortality for those using PEG or mixed methods of enteral tube feeding were mixed and the certainty of evidence was very low. There was some evidence from two studies for enteral tube feeding improving nutritional parameters, but this was very low-certainty evidence. Five studies reported a variety of harm-related outcomes with inconsistent results. The balance of evidence suggested increased risk of pneumonia with enteral tube feeding. None of the included studies assessed behavioural and psychological symptoms of dementia. Authors' conclusions We found no evidence that tube feeding improves survival; improves quality of life; reduces pain; reduces mortality; decreases behavioural and psychological symptoms of dementia; leads to better nourishment; improves family or carer outcomes such as depression, anxiety, carer burden, or satisfaction with care; and no indication of harm. We found some evidence that there is a clinically significant risk of pressure ulcers from enteral tube feeding. Future research should focus on better reporting and matching of control and intervention groups, and clearly defined interventions, measuring all the outcomes referred to here.

People with advanced dementia are frequently bed-bound, doubly incontinent and able to speak only a few words. Many reside in care homes and may often have complex needs requiring efficient and timely response by knowledgeable and compassionate staff. The aim of this study is to improve our understanding of health care professionals' attitudes and knowledge of the barriers to integrated care for people with advanced dementia. In-depth, interactive interviews conducted with 14 health care professionals including commissioners, care home managers, nurses and health care assistants in the UK. Barriers to care for people with advanced dementia are influenced by governmental and societal factors which contribute to challenging environments in care homes, poor morale amongst care staff and a fragmentation of health and social care at the end of life. Quality of care for people with dementia as they approach death may be improved by developing collaborative networks to foster improved relationships between health and social care services.

Objectives The objective of the study is to explore current practice and the role taken by UK memory services in helping carers of people with dementia prepare for the end of life. Methods We used mixed methods including a survey (48 responses/51% response rate) and semistructured interviews (n = 12) with clinicians working in UK memory services accredited by the Memory Services National Accreditation Programme. We used descriptive statistics to report survey findings and thematically analysed interview and survey qualitative data. Results Surveys: services routinely discussed with carers the progressive nature of dementia (89%), legal arrangements (health: 72%; finances: 74%), advance care planning (63%), and implications of loss of capacity (61%). Fewer services routinely discussed the terminal nature of dementia (41%) and meaning of death (11%) with carers. Most (89%) agreed that these conversations were in line with their role. Interview findings corresponded with survey findings. Themes included diagnosis considered too early to discuss end of life, discussions being inconsistent with a "living well" approach, people with dementia being resistant to conversations, and discussions of spirituality crossing professional boundaries. Services' capacity for follow-up with carers impacted on ability to broach these topics. Conclusions More in-depth and distressing topics such as end of life and advance care planning require longer follow-up to establish relationships to broach difficult topics. Variability in follow-up practices between services created inequity in the extent to which memory services could address these topics. More research is required to investigate the best method for broaching these topics with carers and the person with mild dementia within different health care contexts.

The aim of this Australian study was to investigate effects on depression of a 6-month individually tailored home-based exercise program for caregivers, designed to be done with the person they care for. Ninety-one caregiver-care recipient dyads and 30 caregiver-only participants (caregivers scoring ≥4 on the 15 item Geriatric Depression Scale (GDS-15)) were randomized into one of three groups: exercise intervention (n=50, 34 dyads and 16 caregiver only), social support control (n= 50, 42 dyads and 8 caregiver only) or usual care control (n= 21, 15 dyads and 6 caregiver only). The exercise group completed an individualised program based on the Otago-plus. The primary outcome was the proportion of participants with GDS-15 ≤4. Outcome assessors were blinded to group assignment. There were no significant difference in depression between the physical activity intervention group and the social control (OR 1.06, 95% Confidence Interval (CI) 0.44, 2.56) and the physical activity intervention group and the usual care control (OR 1.51 95% CI 0.46, 4.94) at six months or at 12-months. However, more than 50% of caregivers in all three groups no longer had a GDS-15 score >4 at 6 months. Sub-group analysis revealed that after 6 months caregivers in the exercise group caring for someone with an MMSE ≥24 were significantly less depressed than those caring for someone with an MMSE score of

Objective Depression is an adverse outcome frequently seen in carers. With the increasing ageing population and reliance on informal carers, this study aims to identify factors associated with depression in carers in the older age group, using factors that have not been previously investigated. Methods We conducted a cross-sectional analysis of 202 older carers using the Geriatric Depression scale, demographics, personality traits, attitudes to ageing and other carer characteristics. Results Increased hours spent caring and higher levels of neuroticism were all factors associated with depression. The care-recipient diagnosis, other personality traits, attitudes to ageing, leisure-physical activity (PA) and domestic-PA were not significantly associated with depression. Conclusions These findings have important implications for interventions to target at-risk carers. Copyright © 2015 John Wiley & Sons, Ltd.

One of the most difficult times for family carers is when the person they care for moves into a residential care home. Although they are relieved to some extent of the day-to-day tasks of caring, they lose the company of their loved one, which can be especially difficult for spouse carers. It is not always easy to obtain residential placement near to the carer's home, so carers may have to travel some distance to see the person they care for, which they often do on a daily basis. Furthermore, they lose control of the care provided, including the perceived quality of that care. They may also lose services, such as home care, or benefits, such as carer payments, that they were receiving on behalf of the person they were caring for or due to their caring responsibilities. These issues are often poorly recognized and managed in a service system that focuses more on the instrumental rather than emotional and social aspects of care for older people. It is often thought that residential care placement signifies the end of the caring role. However, qualitative research in this area highlights that family care is not relinquished when the cared for person goes into residential care and this is clearly demonstrated in the review of the qualitative literature by Afram and colleagues in this issue.

Objective The objective of this study was to report older Australians' views about what they want from aged care reforms expressed in submissions to the Productivity Commission's ‘Inquiry into Caring for Older Australians’ and the ‘Conversations on Ageing’ (Conversations). Method Consumer responses to the ‘Inquiry into Caring for Older Australians’ (n = 59) and findings from the Conversations (n = 31) conducted by the Honourable MarkButler with the Council on the Ageing were summarised. Results Older people wanted to be included as full citizens in community life with their contributions acknowledged, including as carers. They wanted high quality, accessible and respectful services that supported their independence and over which they had control. They wanted fair and transparent funding arrangements and care that caters for diversity in Australia's older people. They wanted reform to be soon and to have bipartisan support. Conclusion This paper provides consumer perspectives to inform aged care policy, practice and research in Australia.