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Background: Namaste Care is an intervention designed to improve the quality of life for people with advanced dementia by providing individualised stimulation and personalised activities in a group setting. Current evidence indicates there may be benefits from this intervention, but there is a need to explore the practical realities of its implementation, including potential barriers, enablers, and how it is delivered within the context of nursing care homes. Objective: To systematically assess the factors involved in implementing Namaste Care for people with advanced dementia in nursing care homes. To provide pragmatic suggestions on how Namaste Care can be delivered in the context of nursing care homes. Design: Systematically constructed review using framework synthesis. Data sources: Comprehensive searches were conducted in Medline, CINAHL, and PsycINFO databases for studies published between 2018 and 2024. Search concepts included "Namaste Care," "advanced dementia," and related terms. Review methods: Studies were included if they focused on the use of Namaste Care for people with advanced dementia in nursing care homes. Data extraction and quality assessment were performed by two independent researchers using standardised forms and critical appraisal tools. A framework synthesis of the results was conducted, which involves systematically combining qualitative and quantitative data within a structured analytical framework to identify overarching themes and insights. Findings: Twenty-five studies met the inclusion criteria. Key themes identified were: (1) Frequency and duration of Namaste sessions. (2) Namaste Care environment and personalisation of care. (3) Staff engagement and training needs. (4) Involvement of family members and volunteers. Conclusions: Implementing Namaste Care in nursing care homes presents various challenges but also significant opportunities for enhancing the quality of life for residents with advanced dementia. Addressing key themes such as the frequency and duration of sessions, the environment and personalisation of care, staff engagement and training needs, and the involvement of family members and volunteers is crucial. Specifically, providing tailored training programmes for staff, creating dedicated Namaste Care spaces, and encouraging active family and volunteer participation can facilitate effective integration. By incorporating these pragmatic recommendations, Namaste Care can be sustainably integrated into daily care routines, leading to improved resident well-being, reduced behavioural symptoms, and enhanced caregiver-resident interactions. [ABSTRACT FROM AUTHOR]

Abstract Background Namaste Care is an intervention designed to improve the quality of life for people with advanced dementia by providing individualised stimulation and personalised activities in a group setting. Current evidence indicates there may be benefits from this intervention, but there is a need to explore the practical realities of its implementation, including potential barriers, enablers, and how it is delivered within the context of nursing care homes. Objective To systematically assess the factors involved in implementing Namaste Care for people with advanced dementia in nursing care homes. To provide pragmatic suggestions on how Namaste Care can be delivered in the context of nursing care homes. Design Systematically constructed review using framework synthesis. Data sources Comprehensive searches were conducted in Medline, CINAHL, and PsycINFO databases for studies published between 2018 and 2024. Search concepts included “Namaste Care,” “advanced dementia,” and related terms. Review methods Studies were included if they focused on the use of Namaste Care for people with advanced dementia in nursing care homes. Data extraction and quality assessment were performed by two independent researchers using standardised forms and critical appraisal tools. A framework synthesis of the results was conducted, which involves systematically combining qualitative and quantitative data within a structured analytical framework to identify overarching themes and insights. Findings Twenty-five studies met the inclusion criteria. Key themes identified were: (1) Frequency and duration of Namaste sessions. (2) Namaste Care environment and personalisation of care. (3) Staff engagement and training needs. (4) Involvement of family members and volunteers. Conclusions Implementing Namaste Care in nursing care homes presents various challenges but also significant opportunities for enhancing the quality of life for residents with advanced dementia. Addressing key themes such as the frequency and duration of sessions, the environment and personalisation of care, staff engagement and training needs, and the involvement of family members and volunteers is crucial. Specifically, providing tailored training programmes for staff, creating dedicated Namaste Care spaces, and encouraging active family and volunteer participation can facilitate effective integration. By incorporating these pragmatic recommendations, Namaste Care can be sustainably integrated into daily care routines, leading to improved resident well-being, reduced behavioural symptoms, and enhanced caregiver-resident interactions.

Abstract Background The quality of life (QoL) of long-term care residents with advanced dementia represents a critical concern. However, empirical data on this topic especially within Chinese society remains relatively scarce. Aims This study aimed to investigate the QoL in this population and identify the key factors affecting it. Methods A cross-sectional study employing cluster sampling methodology was carried out in three long-term care facilities in Macao, involving a sample of 81 residents. The participants were assessed using the Functional Assessment Staging Test (FAST) and the Quality of Life in Late-Stage Dementia (QUALID) scale. Other variables recorded included Behavioral and Psychological Symptoms of Dementia (BPSD), comorbidities, PAINAD scores, and Waterlow scores. Results The majority of participants were female (65.4%), and 70.1% were classified at Stage 7 on the FAST scale. The mean score on the QUALID was 23.94 ± 7.58, suggesting a relatively lower QoL in Macao, particularly in items of smiling, interaction, and touch. Multiple linear regression analysis indicated that higher PAINAD scores, presence of BPSD, and higher FAST stage were significantly associated with lower quality of life among long-term care residents with advanced dementia, explaining 65.9% of the total variance (F = 36.639, p

Purpose of review: This review aims to synthesise contemporary research on symptom management for people with advanced dementia who are thought to be in the final year of life. It highlights the unique challenges faced by palliative care and dementia care specialists, offering insights into the clinical decision-making required to support those with advanced dementia in various care settings. Recent findings: Recent studies indicate that people with advanced dementia often experience significant unmet palliative care needs, particularly regarding symptom management. Pain, breathlessness, and psychological distress are frequently mismanaged, which contributes to suboptimal care. Moreover, the unpredictable trajectory of dementia complicates the identification of end-of-life needs, which can result in fragmented care. Caregivers, both professional and family, struggle with managing complex symptoms, while family caregivers in home settings face added burdens in providing care without sufficient support. Summary: Palliative care for people with advanced dementia is currently inadequate due to a lack of tailored interventions, poor symptom management, and disjointed care systems. Enhancing training for caregivers, fostering interdisciplinary collaboration, and focusing on integrated care approaches across home and institutional settings are crucial to improving quality of life and symptom control for people with advanced dementia. [ABSTRACT FROM AUTHOR]

Background: Despite multiple consensus statements in the literature advising against use of artificial nutrition and hydration (ANH) for patients with advanced dementia clinicians continue to offer ANH when families request it. In order to better align practices with consensus statements, we implemented a policy within our institution which stated that feeding tubes would not be offered for patients who were experiencing difficulties eating as a result of advanced dementia. Methods: We created a workgroup to develop a policy addressing use of feeding tubes in the setting of advanced dementia. Prior to implementation of the policy, we conducted a one-time cross-sectional faculty survey to assess knowledge and attitudes regarding the use of feeding tubes in the setting of advanced dementia. Approximately two years after implementation, we conducted a follow up survey to try to assess the impact of our policy. Results: In the post-implementation survey, there was a trend towards increased recognition about risks and benefits associated with feeding tubes in patients with advanced dementia. The post-implementation survey also solicited feedback regarding the policy's utility. Of the individuals who were aware of the policy, 58% reported using the policy to guide decision making, 77% found it helpful, and 32% reported unforeseen problems. Conclusions: While the feedback on impact of the policy was mixed, our results suggest that it is beneficial to have such a policy in place in order to support physicians decision making. As a result, we believe our practices better align with consensus statements. [ABSTRACT FROM AUTHOR]

Background: The quality of life (QoL) of long-term care residents with advanced dementia represents a critical concern. However, empirical data on this topic especially within Chinese society remains relatively scarce. Aims: This study aimed to investigate the QoL in this population and identify the key factors affecting it. Methods: A cross-sectional study employing cluster sampling methodology was carried out in three long-term care facilities in Macao, involving a sample of 81 residents. The participants were assessed using the Functional Assessment Staging Test (FAST) and the Quality of Life in Late-Stage Dementia (QUALID) scale. Other variables recorded included Behavioral and Psychological Symptoms of Dementia (BPSD), comorbidities, PAINAD scores, and Waterlow scores. Results: The majority of participants were female (65.4%), and 70.1% were classified at Stage 7 on the FAST scale. The mean score on the QUALID was 23.94 ± 7.58, suggesting a relatively lower QoL in Macao, particularly in items of smiling, interaction, and touch. Multiple linear regression analysis indicated that higher PAINAD scores, presence of BPSD, and higher FAST stage were significantly associated with lower quality of life among long-term care residents with advanced dementia, explaining 65.9% of the total variance (F = 36.639, p < 0.001). Conclusions: The findings indicated that residents with advanced dementia in Macao experience relatively lower quality of life, particularly in aspects such as smiling, interaction, and touch. Pain, BPSD, and advanced dementia stage are the three major associated factors of QoL among long-term care residents with advanced dementia. Comprehensive and individually tailored care strategies focusing on pain management and interventions targeting BPSD are suggested to enhance QoL in this population. [ABSTRACT FROM AUTHOR]

Background Tube feeding is discouraged among older adults with advanced dementia; nevertheless, caregivers often find feeding decisions challenging to navigate. Aim This study aims to gain a comprehensive understanding of tube feeding among community-dwelling older adults with advanced dementia in Singapore and its relationship to older adult quality of life (QoL) and caregiver psychological distress. Methods We use a convergent mixed-methods design, synthesising analysis of qualitative caregiver interviews (n  = 25) and two-year prospective, longitudinal cohort survey data (n  = 215, 1018 observations). Results Findings from the qualitative interviews revealed caregivers' expectations of reduced QoL for older adults with feeding tubes and their own distress related to making feeding decisions and fears prompting plans to tube-feed. Sixteen percent of community-dwelling older adults with advanced dementia relied on feeding tubes during the two-year study period. Adjusting for potential confounding and using instrumental variables estimation, tube feeding was associated with reduced older adult QoL (P  < .05) and increased caregiver anxiety and depression (P  < .10). Conclusion Consistent with expert guidelines, we found that tube feeding was associated with significantly reduced QOL among older adults living with dementia and increased distress among caregivers relative to those of older adults without feeding tubes. Despite caregivers' recognition of reduced QOL associated with older adult use of feeding tubes, many expressed angst related to feeding choices. Our findings suggest the need for decision tools to support caregivers in making informed decisions concordant with their values. [ABSTRACT FROM AUTHOR]

Abstract Background Long-term care (LTC) settings are becoming home to an increasing number of people living with advanced or late-stage dementia. Residents living with advanced dementia represent some of society’s most vulnerable and socially excluded populations and are thus at an increased risk of social isolation. A multisensory intervention tailored to this population, Namaste Care, has been developed to improve quality of life for residents living with advanced dementia in LTC homes. To date, limited research has explored the perspectives of staff in implementing the Namaste Care program with an emphasis on social inclusion of residents in Canadian LTC homes. This study aimed to describe the perspectives of LTC staff on the implementation facilitators and barriers of Namaste Care as a program to support the social inclusion of residents living with advanced dementia. Methods Using a qualitative descriptive design, semi-structured interviews (n = 12) and focus groups (n = 6) were conducted in two LTC homes in Southern Ontario, Canada, over a 6-month period. Convenience sampling was used to recruit LTC home staff from the two participating sites. Thematic analysis was used to analyze data. Results LTC staff (n = 46) emphasized the program’s ability to recognize the unique needs of residents with advanced dementia, and also stated its potential to facilitate meaningful connections between families and residents, as well as foster care partnerships between staff and families. Findings indicated staff also perceived numerous facilitators and barriers to Namaste Care. In particular, providing staff with dedicated time for Namaste Care and implementing volunteer and family participation in the program were seen as facilitators, whereas the initial perception of the need for extra staff to deliver Namaste Care and identifying times in the day where Namaste Care was feasible for residents, families, and staff, were seen as barriers. Conclusions LTC staff recognized the need for formalized programs like Namaste Care to address the biopsychosocial needs of residents with advanced dementia and offer positive care partnership opportunities between staff and family members. Although staffing constraints remain the largest barrier to effective implementation, staff valued the program and made suggestions to build LTC home capacity for Namaste Care.

Why you should read this article: • To understand the causes and risk factors for incontinence in people living with dementia • To learn about practical strategies that can support people living with dementia and their family carers to manage incontinence • To contribute towards revalidation as part of your 35 hours of CPD (UK readers) • To contribute towards your professional development and local registration renewal requirements (non-UK readers). Urinary and faecal incontinence are more prevalent among older people but, like dementia, incontinence is not a normal or inevitable part of ageing. The number of people living with dementia who experience continence issues is likely to be underestimated because many people avoid reporting them as a result of embarrassment and stigma, or because they think incontinence is an inevitable symptom of dementia and that nothing can be done about it. Increased awareness and understanding of the relationship between dementia and incontinence is needed so that nurses can persuade people living with dementia and their family carers to discuss continence issues, assess their needs and provide support. There are several practical strategies that can reduce the incidence of incontinence, counter its negative effects and promote continence in people living with dementia. [ABSTRACT FROM AUTHOR]

• An advanced dementia prognostic tool (ADEPT) was used to predict 2-year survival. • Patients had higher mean ADEPT scores but lower mortality. • ADEPT cutoff score 11.2 has diagnostic reference value for survival prediction. • There was no difference in survival prediction between hospitals and nursing homes. • Filial piety and other factors generate positive treatment attitude. In this prospective study, we evaluated the usefulness of the advanced dementia prognostic tool (ADEPT) for estimating the 2-year survival of persons with advanced dementia (AD) in China. The study predicted the 2-year mortality of 115 persons with AD using the ADEPT score. In total, 115 persons with AD were included in the study. Of these persons, 48 died. The mean ADEPT score was 13.0. The AUROC for the prediction of the 2-year mortality rate using the ADEPT score was 0.62. The optimal threshold of the ADEPT score was 11.2, which had an AUROC of 0.63, specificity of 41.8, and sensitivity of 83.3. The ADEPT score based on a threshold of 11.2 may serve as a prognostic tool to determine the 2-year survival rate of persons with AD in Chongqing, China. However, further studies are needed to explore the nature of this relationship. [ABSTRACT FROM AUTHOR]

Many people dread prolonged dying with suffering in the terminal illness, advanced dementia. To successfully facilitate a timely dying, advance directives must be effective and acceptable. This article considers whether authorities, including treating physicians, can accept as moral, the effective intervention that ceases caregivers' assistance with oral feeding and hydrating. The article presents eight criticisms and "alternate views" regarding ceasing assisted feeding/hydrating. It draws on perspectives from clinical medicine, law, ethics, and religion. The conflict is between (A) people's core beliefs that reflect cultural norms and religious teachings regarding what is moral versus (B) patients' autonomous right of self‐determination and claim right to avoid suffering. The article presents each side as strongly as possible. Accepting the intervention as moral could allow patients a peaceful and timely dying from patients' underlying disease. Confidence in future success can deter patients and their surrogates from considering a hastened dying in earlier stages of dementia. [ABSTRACT FROM AUTHOR]

Patients living with advanced dementia (PLADs) face several challenges to attain the goal of avoiding prolonged dying with severe suffering. One is how to determine when PLADs' current suffering becomes severe enough to cease all life‐sustaining treatments, including withdrawing assistance with oral feeding and hydrating, a controversial order. This article broadens the concept of suffering by including suffering that cannot be observed contemporaneously and the suffering of loved ones. Four paradigm shifts operationalize these concepts. During advance care planning, patients can judge which future clinical conditions would cause severe suffering. To decide when to allow patients to die, treating physicians/providers only need to assess if patients have reached patients' previously judged, qualifying conditions. Questions: Will this protocol prevent PLADs' prolonged dying with suffering? Deter early‐stage dementia patients from committing preemptive suicide? Sway decision‐making surrogates from withholding life‐sustaining treatments from patients with middle‐stage dementia? Provoke providers' resistance to relinquish their traditional, unilateral authority to determine patients' suffering? [ABSTRACT FROM AUTHOR]

Abstract Background The growing body of research on narrative identity, while helpful, rarely focuses on people with dementia. In this paper, we explore how individuals living with advanced dementia construct their narrative identities in relation to their family experiences, which play a crucial role in shaping identity as shown by recent studies. Methods We conducted a qualitative study using data from 15 semi-structured interviews with people aged 66 to 94 who have advanced dementia. The data were analyzed using a textual-oriented discourse analysis. Results We identified two discourses—autobiographical and economic—that organize their narrative identities. Through the autobiographical discourse, participants emphasized their sense of belonging within a social group and their role as custodians of family identity. Within the economic discourse, they negotiated their social utility and value, particularly in response to demeaning discourses targeting individuals who do not accumulate wealth. In the structural analysis, we identified two narrative types—looped or unfolding—that depend on their affective experiences related to their family. We especially explored how the repetition of narrative threads by individuals with dementia might indicate a traumatic background rather than just memory disruptions. Conclusions This study provides insights into the narrative identities of individuals with advanced dementia, shedding light on the intersection of family experiences and identity formation in this population.

Background: Speech-language therapists (SLTs) may recommend tube feeding even with minimal research evidence of its effectiveness, and an understanding of SLTs’ perceived practices is warranted. Objectives: To qualitatively describe a sample of South African SLTs’ perceived practices regarding feeding tube placement in people with advanced dementia. Method: Semi-structured online interviews were conducted via Microsoft Teams. Eight South African SLTs with a particular interest in advanced dementia, in public and private settings, were recruited. Data were analysed using inductive reflexive thematic analysis. Results: Three main themes were identified: (1) factors influencing SLTs’ decisions for feeding tube placement in people with advanced dementia; (2) nature of clinical setting and SLTs’ decision-making and (3) SLTs’ considerations to improve management of people with advanced dementia. Existing local palliative care guidelines were not employed in decisions about tube feeding. Most participants did not recommend tube feeding during end-of-life care. Perceived burden of care influenced participants’ decisions about tube feeding. Conclusion: Speech-language therapists in South Africa likely have an increased reliance on clinical experience rather than recent research and guidelines for decisions about feeding tube placement. Findings accentuate the importance of clinical supervision, mentoring and continuous professional development in the workplace. The findings are an urgent call to action to improve SLTs’ overall practices and ethical service delivery for people with advanced dementia and their families. Contribution: Factors and needs regarding SLTs’ decision-making about feeding tubes in people with advanced dementia are highlighted.

Abstract Patients living with advanced dementia (PLADs) face several challenges to attain the goal of avoiding prolonged dying with severe suffering. One is how to determine when PLADs’ current suffering becomes severe enough to cease all life‐sustaining treatments, including withdrawing assistance with oral feeding and hydrating, a controversial order. This article broadens the concept of suffering by including suffering that cannot be observed contemporaneously and the suffering of loved ones. Four paradigm shifts operationalize these concepts. During advance care planning, patients can judge which future clinical conditions would cause severe suffering. To decide when to allow patients to die, treating physicians/providers only need to assess if patients have reached patients' previously judged, qualifying conditions. Questions: Will this protocol prevent PLADs’ prolonged dying with suffering? Deter early‐stage dementia patients from committing preemptive suicide? Sway decision‐making surrogates from withholding life‐sustaining treatments from patients with middle‐stage dementia? Provoke providers’ resistance to relinquish their traditional, unilateral authority to determine patients’ suffering?

Abstract Many healthcare providers think withholding food and fluids from advance dementia patients, even if those patients requested that when competent, is immoral. This means such patients suffer unnecessarily long. Patients have the ethical right when capacitated to specify that they want assistance with food and drink stopped when they have advanced dementia. Physicians should implement these patient choices when advance dementia patients can no longer feed themselves. In some states there may be legal barriers to this practice. The perpetual placement of food and drink within reach of patients who are unable to feed themselves is futile, so there is no need for it. The best way for persons concerned about suffering in advanced dementia is to add a supplement to one's advance directive specifying under what circumstances one wants food and fluids assistance stopped.

Abstract Many people dread prolonged dying with suffering in the terminal illness, advanced dementia. To successfully facilitate a timely dying, advance directives must be effective and acceptable. This article considers whether authorities, including treating physicians, can accept as moral, the effective intervention that ceases caregivers’ assistance with oral feeding and hydrating. The article presents eight criticisms and “alternate views” regarding ceasing assisted feeding/hydrating. It draws on perspectives from clinical medicine, law, ethics, and religion. The conflict is between (A) people's core beliefs that reflect cultural norms and religious teachings regarding what is moral versus (B) patients’ autonomous right of self‐determination and claim right to avoid suffering. The article presents each side as strongly as possible. Accepting the intervention as moral could allow patients a peaceful and timely dying from patients’ underlying disease. Confidence in future success can deter patients and their surrogates from considering a hastened dying in earlier stages of dementia.

Dementia progressively affects cognitive functioning, including the ability to communicate. Those who struggle to communicate are often considered unable to relate to other people. Frontline care workers are in a position to connect with residents. However, we know little about their perspectives. The aim of this study was to understand how and when nursing home staff meaningfully engaged with residents with advanced dementia. Semi-structured interviews, supplemented by informal conversations, were conducted with 21 staff from seven nursing homes. Inductive thematic analysis identified themes in the accounts. Four themes related to how staff engaged with residents with advanced dementia (initiating meaningful engagement, recognising subtle reactions, practising caring behaviours, patience and perseverance). Two themes related to when meaningful engagement occurred (lacking time to connect, making the most of time during personal care). A key barrier to implementing formal interventions to improve care is lack of staff time. Staff overcome this by using personal care time for meaningful engagement with residents. Their approach, developed through experience, is consonant with person-centred dementia care. Building on this, future research should use participatory approaches building on practice wisdom to further develop and evaluate meaningful engagement with residents with advanced dementia. [ABSTRACT FROM AUTHOR]

Background: Long-term care (LTC) settings are becoming home to an increasing number of people living with advanced or late-stage dementia. Residents living with advanced dementia represent some of society's most vulnerable and socially excluded populations and are thus at an increased risk of social isolation. A multisensory intervention tailored to this population, Namaste Care, has been developed to improve quality of life for residents living with advanced dementia in LTC homes. To date, limited research has explored the perspectives of staff in implementing the Namaste Care program with an emphasis on social inclusion of residents in Canadian LTC homes. This study aimed to describe the perspectives of LTC staff on the implementation facilitators and barriers of Namaste Care as a program to support the social inclusion of residents living with advanced dementia. Methods: Using a qualitative descriptive design, semi-structured interviews (n = 12) and focus groups (n = 6) were conducted in two LTC homes in Southern Ontario, Canada, over a 6-month period. Convenience sampling was used to recruit LTC home staff from the two participating sites. Thematic analysis was used to analyze data. Results: LTC staff (n = 46) emphasized the program's ability to recognize the unique needs of residents with advanced dementia, and also stated its potential to facilitate meaningful connections between families and residents, as well as foster care partnerships between staff and families. Findings indicated staff also perceived numerous facilitators and barriers to Namaste Care. In particular, providing staff with dedicated time for Namaste Care and implementing volunteer and family participation in the program were seen as facilitators, whereas the initial perception of the need for extra staff to deliver Namaste Care and identifying times in the day where Namaste Care was feasible for residents, families, and staff, were seen as barriers. Conclusions: LTC staff recognized the need for formalized programs like Namaste Care to address the biopsychosocial needs of residents with advanced dementia and offer positive care partnership opportunities between staff and family members. Although staffing constraints remain the largest barrier to effective implementation, staff valued the program and made suggestions to build LTC home capacity for Namaste Care. [ABSTRACT FROM AUTHOR]

Abstract Background Challenges in prognosticating patients diagnosed with advanced dementia (AD) hinders timely referrals to palliative care. We aim to develop and validate a prognostic model to predict one-year all-cause mortality (ACM) in patients with AD presenting at an acute care hospital. Methods This retrospective cohort study utilised administrative and clinical data from Tan Tock Seng Hospital (TTSH). Patients admitted to TTSH between 1st July 2016 and 31st October 2017 and identified to have AD were included. The primary outcome was ACM within one-year of AD diagnosis. Multivariable logistic regression was used. The PROgnostic Model for Advanced Dementia (PRO-MADE) was internally validated using a bootstrap resampling of 1000 replications and externally validated on a more recent cohort of AD patients. The model was evaluated for overall predictive accuracy (Nagelkerke’s R2 and Brier score), discriminative [area-under-the-curve (AUC)], and calibration [calibration slope and calibration-in-the-large (CITL)] properties. Results A total of 1,077 patients with a mean age of 85 (SD: 7.7) years old were included, and 318 (29.5%) patients died within one-year of AD diagnosis. Predictors of one-year ACM were age > 85 years (OR:1.87; 95%CI:1.36 to 2.56), male gender (OR:1.62; 95%CI:1.18 to 2.22), presence of pneumonia (OR:1.75; 95%CI:1.25 to 2.45), pressure ulcers (OR:2.60; 95%CI:1.57 to 4.31), dysphagia (OR:1.53; 95%CI:1.11 to 2.11), Charlson Comorbidity Index ≥ 8 (OR:1.39; 95%CI:1.01 to 1.90), functional dependency in ≥ 4 activities of daily living (OR: 1.82; 95%CI:1.32 to 2.53), abnormal urea (OR:2.16; 95%CI:1.58 to 2.95) and abnormal albumin (OR:3.68; 95%CI:2.07 to 6.54) values. Internal validation results for optimism-adjusted Nagelkerke’s R2, Brier score, AUC, calibration slope and CITL were 0.25 (95%CI:0.25 to 0.26), 0.17 (95%CI:0.17 to 0.17), 0.76 (95%CI:0.76 to 0.76), 0.95 (95% CI:0.95 to 0.96) and 0 (95%CI:-0.0001 to 0.001) respectively. When externally validated, the model demonstrated an AUC of 0.70 (95%CI:0.69 to 0.71), calibration slope of 0.64 (95%CI:0.63 to 0.66) and CITL of -0.27 (95%CI:-0.28 to -0.26). Conclusion The PRO-MADE attained good discrimination and calibration properties. Used synergistically with a clinician’s judgement, this model can identify AD patients who are at high-risk of one-year ACM to facilitate timely referrals to palliative care.

Background: The growing body of research on narrative identity, while helpful, rarely focuses on people with dementia. In this paper, we explore how individuals living with advanced dementia construct their narrative identities in relation to their family experiences, which play a crucial role in shaping identity as shown by recent studies. Methods: We conducted a qualitative study using data from 15 semi-structured interviews with people aged 66 to 94 who have advanced dementia. The data were analyzed using a textual-oriented discourse analysis. Results: We identified two discourses—autobiographical and economic—that organize their narrative identities. Through the autobiographical discourse, participants emphasized their sense of belonging within a social group and their role as custodians of family identity. Within the economic discourse, they negotiated their social utility and value, particularly in response to demeaning discourses targeting individuals who do not accumulate wealth. In the structural analysis, we identified two narrative types—looped or unfolding—that depend on their affective experiences related to their family. We especially explored how the repetition of narrative threads by individuals with dementia might indicate a traumatic background rather than just memory disruptions. Conclusions: This study provides insights into the narrative identities of individuals with advanced dementia, shedding light on the intersection of family experiences and identity formation in this population. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To understand why diagnosing dementia is important in care homes • To reflect on how a diagnosis of dementia enables nurses to deliver person-centred care • To learn how dementia diagnosis rates in care homes might be improved It has been estimated that 70% of care home residents have dementia on admission or develop it after admission, but that many do not have or receive a formal diagnosis of dementia. People with dementia often have significant care needs and it is important that the condition is diagnosed even at an advanced stage. This will enable nurses to predict the person's care needs, develop appropriate care plans and arrange pre-emptive decisions. In 2021-22, a quality improvement project took place in care homes in West Norfolk. This project piloted an abbreviated memory assessment model based on the Diagnosing Advanced Dementia Mandate (DiADeM) tool to increase the rate of diagnoses among residents showing signs and symptoms of cognitive impairment but not formally diagnosed with dementia. Out of 109 residents assessed, 95 were diagnosed with dementia. The pilot is being extended locally and replicated across England. [ABSTRACT FROM AUTHOR]

Many healthcare providers think withholding food and fluids from advance dementia patients, even if those patients requested that when competent, is immoral. This means such patients suffer unnecessarily long. Patients have the ethical right when capacitated to specify that they want assistance with food and drink stopped when they have advanced dementia. Physicians should implement these patient choices when advance dementia patients can no longer feed themselves. In some states there may be legal barriers to this practice. The perpetual placement of food and drink within reach of patients who are unable to feed themselves is futile, so there is no need for it. The best way for persons concerned about suffering in advanced dementia is to add a supplement to one's advance directive specifying under what circumstances one wants food and fluids assistance stopped. [ABSTRACT FROM AUTHOR]

Abstract Background The terminal illness of late-stage (advanced) Alzheimer’s and related dementias is progressively cruel, burdensome, and can last years if caregivers assist oral feeding and hydrating. Options to avoid prolonged dying are limited since advanced dementia patients cannot qualify for Medical Aid in Dying. Physicians and judges can insist on clear and convincing evidence that the patient wants to die—which many advance directives cannot provide. Proxies/agents’ substituted judgment may not be concordant with patients’ requests. While advance directives can be patients’ last resort to attain a peaceful and timely dying consistent with their lifelong values, success depends on their being effective and acceptable. A single flaw can provide opponents justification to refuse the directive’s requests to cease assisted feeding. Aim This article considers 24 common advance directive flaws in four categories. Process flaws focus on how patients express their end-of-life wishes. Content flaws reflect drafters’ selection of conditions and interventions, and how they are described. Inherent flaws can make advance directives unacceptable to authorities concerned about premature dying. Strategies are needed to compel physicians to write needed orders and to prevent third parties from sabotaging these orders after they are implemented. The article includes excerpts from “dementia-specific” directives or supplements that exemplify each flaw—mostly from the US and Europe. No directive critiqued here included an effective strategy to resolve this long-debated bioethical conflict: the past directive requests “Cease assisted feeding” but the incapacitated patient apparently expresses the desire to “Continue assisted feeding.” Some opponents to the controversial request, cease assisted feeding, use this conflict as a conceptual wedge to practice hard paternalism. This article proposes a protocol to prevent this conflict from emerging. These strategies may prevent authorities from requiring patients to fulfill authorities’ additional clinical criteria as a prerequisite to honor the requests in patients directives. Conclusion This critique of flaws may serve as a guide to drafting and to selecting effective and acceptable advance directives for dementia. It also poses several bioethical and clinical questions to those in authority: Does your paternalistic refusal to honor patients’ wishes respect their self-determination? Protect vulnerable patients from harm? Force patients to endure prolonged suffering? Violate the principles of bioethics? Violate the very foundation of patient-centered care?

Background: Challenges in prognosticating patients diagnosed with advanced dementia (AD) hinders timely referrals to palliative care. We aim to develop and validate a prognostic model to predict one-year all-cause mortality (ACM) in patients with AD presenting at an acute care hospital. Methods: This retrospective cohort study utilised administrative and clinical data from Tan Tock Seng Hospital (TTSH). Patients admitted to TTSH between 1st July 2016 and 31st October 2017 and identified to have AD were included. The primary outcome was ACM within one-year of AD diagnosis. Multivariable logistic regression was used. The PROgnostic Model for Advanced Dementia (PRO-MADE) was internally validated using a bootstrap resampling of 1000 replications and externally validated on a more recent cohort of AD patients. The model was evaluated for overall predictive accuracy (Nagelkerke's R2 and Brier score), discriminative [area-under-the-curve (AUC)], and calibration [calibration slope and calibration-in-the-large (CITL)] properties. Results: A total of 1,077 patients with a mean age of 85 (SD: 7.7) years old were included, and 318 (29.5%) patients died within one-year of AD diagnosis. Predictors of one-year ACM were age > 85 years (OR:1.87; 95%CI:1.36 to 2.56), male gender (OR:1.62; 95%CI:1.18 to 2.22), presence of pneumonia (OR:1.75; 95%CI:1.25 to 2.45), pressure ulcers (OR:2.60; 95%CI:1.57 to 4.31), dysphagia (OR:1.53; 95%CI:1.11 to 2.11), Charlson Comorbidity Index ≥ 8 (OR:1.39; 95%CI:1.01 to 1.90), functional dependency in ≥ 4 activities of daily living (OR: 1.82; 95%CI:1.32 to 2.53), abnormal urea (OR:2.16; 95%CI:1.58 to 2.95) and abnormal albumin (OR:3.68; 95%CI:2.07 to 6.54) values. Internal validation results for optimism-adjusted Nagelkerke's R2, Brier score, AUC, calibration slope and CITL were 0.25 (95%CI:0.25 to 0.26), 0.17 (95%CI:0.17 to 0.17), 0.76 (95%CI:0.76 to 0.76), 0.95 (95% CI:0.95 to 0.96) and 0 (95%CI:-0.0001 to 0.001) respectively. When externally validated, the model demonstrated an AUC of 0.70 (95%CI:0.69 to 0.71), calibration slope of 0.64 (95%CI:0.63 to 0.66) and CITL of -0.27 (95%CI:-0.28 to -0.26). Conclusion: The PRO-MADE attained good discrimination and calibration properties. Used synergistically with a clinician's judgement, this model can identify AD patients who are at high-risk of one-year ACM to facilitate timely referrals to palliative care. [ABSTRACT FROM AUTHOR]

It is estimated that there are currently 944,000 older people living with dementia in the UK, and that 593,200 of those people are living with advanced symptoms. People living with advanced dementia have a significantly higher prevalence of pressure ulcers (PUs), compared to those living without dementia with similar comorbidities. The care and support required to prevent pressure ulcers in people living with dementia needs to be individualised, following a holistic and person-centred assessment of the person and their unique circumstances. An improved understanding of the increased risk and causal factors of developing pressure ulcers in high risk groups, such as people living with advanced dementia, can support practitioners to conduct a more through and person-centred risk assessment and management plan, including choosing the most appropriate products to meet a person's needs. [ABSTRACT FROM AUTHOR]

Objective: Millions of Americans may face hard decisions when it comes to providing nutrition for their loved ones with advanced dementia. This study aimed to ascertain whether there is a difference in feeding tube placement between White and Black patients with advanced dementia and whether this potential difference varied by patient's other demographic and clinical characteristics. Method: This is a retrospective, observational study conducted at Novant Health, a 15-hospital system in the southeastern United States. Data were obtained from Epic systems and included all hospital admissions with a diagnosis of advanced dementia, a total of 21,939, between July 1, 2015, and December 31, 2018. Descriptive statistics and logistics analyses were conducted to assess the relationship between receiving percutaneous endoscopic gastrostomy (PEG) and race, controlling for demographic and clinical characteristics. Results: Among patients admitted with advanced dementia, the multivariable logistic regression, controlled for age, gender, LOS, palliative care, and vascular etiology showed that Blacks had higher odds of having PEG tubes inserted than White patients (OR 1.97; CI 1.51–2.55; P < 0.001). Patients with longer stays had higher odds of PEG tube insertion. Females had lower odds of PEG tube insertion than males. There was no statistical significance in PEG insertion based on age, etiology, and palliative care consult. Significance of results: The reasons for the observed higher odds of receiving PEG tubes among Black patients than White patients are likely multifactorial and embedded in a different approach to end-of-life care conversations by providers and caregivers of Black and White patients. Providers may need to be more aware of potential unconscious biases when talking to caregivers, especially in race-discordant relationships, have courageous conversations with caregivers, and be more aware of the importance of keeping in mind families' and caregivers' culture, including spirituality, when making end-of-life decisions. [ABSTRACT FROM AUTHOR]

Abstract Background The Mini Suffering State Examination (MSSE) has been explicitly recommended to assess suffering in dementia patients. This study aimed to develop a German version of the MSSE and assess its psychometric properties involving people with advanced dementia (PAD) in a nursing home setting. Methods The MSSE was translated into German, and 95 primary nurses administered it cross-sectionally to 124 PAD in Zurich, Switzerland. The psychometric properties of the German MSSE version were calculated for this population. Results The mean age of the PAD was 83.3 years (SD = 9.1, range = 55–102 years), and 98 of them (79.0%) were women. The Kuder-Richardson Formula 20 coefficient for the entire scale (0.58), the eight items relating to objective health conditions (0.39), and the professional and family estimation of the patient’s suffering (0.64) indicated low internal consistency. A confirmatory factor analysis indicated an unsatisfactory fit to a one-factor structure, with a comparative fit index and root mean square error of approximation of 0.71 and 0.08, respectively, and a Tucker–Lewis index of 0.64. The MSSE total score was significantly but moderately correlated with the total scores of the Symptom Management–End-of-Life with Dementia (SM-EOLD) scale (Pearson’s correlation coefficient (r) = -0.44; p

Background: Approximately 20% of older persons with dementia have atrial fibrillation (AF). Nearly all have stroke risks that exceed the guideline‐recommended threshold for anticoagulation. Although individuals with dementia develop profound impairments and die from the disease, little evidence exists to guide anticoagulant discontinuation, and almost one‐third of nursing home residents with advanced dementia and AF remain anticoagulated in the last 6 months of life. We aimed to quantify the benefits and harms of anticoagulation in this population. Methods: Using Minimum Data Set and Medicare claims, we conducted a retrospective cohort study with 14,877 long‐stay nursing home residents aged ≥66 between 2013 and 2018 who had advanced dementia and AF. We excluded individuals with venous thromboembolism and valvular heart disease. We measured anticoagulant exposure quarterly, using Medicare Part D claims. The primary outcome was all‐cause mortality; secondary outcomes were ischemic stroke and serious bleeding. We performed survival analyses with multivariable adjustment and inverse probability of treatment (IPT) weighting. Results: In the study sample, 72.0% were female, 82.7% were aged ≥80 years, and 13.5% were nonwhite. Mean CHA2DS2VASC score was 6.19 ± 1.58. In multivariable survival analysis, anticoagulation was associated with decreased risk of death (HR 0.71, 95% CI 0.67–0.75) and increased bleeding risk (HR 1.15, 95% CI 1.02–1.29); the association with stroke risk was not significant (HR 1.08, 95% CI 0.80–1.46). Results were similar in models with IPT weighting. While >50% of patients in both groups died within a year, median weighted survival was 76 days longer for anticoagulated individuals. Conclusion: Persons with advanced dementia and AF derive clinically modest life prolongation from anticoagulation, at the cost of elevated risk of bleeding. The relevance of this benefit is unclear in a group with high dementia‐related mortality and for whom the primary goal is often comfort. [ABSTRACT FROM AUTHOR]

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Abstract Background Polypharmacy is common in people with dementia. The use of psychotropic drugs (PDs) and other, potentially inappropriate medications is high. The aims of this cross-sectional study were 1) to investigate the use of drugs in people with advanced dementia (PWAD), living at home or in long term care (LTC); 2) to focus on PD use; and 3) to identify determinants of PD use. Methods The study was performed in the context of EPYLOGE (IssuEs in Palliative care for people in advanced and terminal stages of YOD and LOD in Germany). 191 PWAD were included. All drugs that were administered at the date of the examination were recorded. Multiple logistic regression analysis identified determinants of PD use. Results 96% of PWAD received medication with a median number of four drugs. 49.7% received five or more drugs. According to the Beers Criteria 39% of PWAD ≥ 65 years received at least one potentially inappropriate medication. 79% of PWAD were treated with PDs. Older PWAD and PWAD living in LTC facilities received significantly more drugs than younger PWAD, and PWAD living at home, respectively. Dementia etiology was significantly associated with the use of antipsychotics, antidepressants and sedative substances. Place of living was associated with the use of pain medication. Behavioral disturbances were associated with the use of antipsychotics and sedative substances. Conclusions To mitigate the dangers of polypharmacy and medication related harm, critical examination is required, whether a drug is indicated or not. Also, the deprescribing of drugs should be considered on a regular basis. Trial registration Clinicaltrial.gov, NCT03364179 . Registered 6 December 2017.

Background: The terminal illness of late-stage (advanced) Alzheimer's and related dementias is progressively cruel, burdensome, and can last years if caregivers assist oral feeding and hydrating. Options to avoid prolonged dying are limited since advanced dementia patients cannot qualify for Medical Aid in Dying. Physicians and judges can insist on clear and convincing evidence that the patient wants to die-which many advance directives cannot provide. Proxies/agents' substituted judgment may not be concordant with patients' requests. While advance directives can be patients' last resort to attain a peaceful and timely dying consistent with their lifelong values, success depends on their being effective and acceptable. A single flaw can provide opponents justification to refuse the directive's requests to cease assisted feeding.Aim: This article considers 24 common advance directive flaws in four categories. Process flaws focus on how patients express their end-of-life wishes. Content flaws reflect drafters' selection of conditions and interventions, and how they are described. Inherent flaws can make advance directives unacceptable to authorities concerned about premature dying. Strategies are needed to compel physicians to write needed orders and to prevent third parties from sabotaging these orders after they are  implemented. The article includes excerpts from "dementia-specific" directives or supplements that exemplify each flaw-mostly from the US and Europe. No directive critiqued here included an effective strategy to resolve this long-debated bioethical conflict: the past directive requests "Cease assisted feeding" but the incapacitated patient apparently expresses the desire to "Continue assisted feeding." Some opponents to the controversial request, cease assisted feeding, use this conflict as a conceptual wedge to practice hard paternalism. This article proposes a protocol to prevent this conflict from emerging. These strategies may prevent authorities from requiring patients to fulfill authorities' additional clinical criteria as a prerequisite to honor the requests in patients directives.Conclusion: This critique of flaws may serve as a guide to drafting and to selecting effective and acceptable advance directives for dementia. It also poses several bioethical and clinical questions to those in authority: Does your paternalistic refusal to honor patients' wishes respect their self-determination? Protect vulnerable patients from harm? Force patients to endure prolonged suffering? Violate the principles of bioethics? Violate the very foundation of patient-centered care? [ABSTRACT FROM AUTHOR]

Delirium and dementia are common causes of cognitive impairment among older adults, which often coexist. Delirium is associated with poor clinical outcomes, and is more frequent and more severe in patients with dementia. Identifying delirium in the presence of dementia, also described as delirium superimposed on dementia (DSD), is particularly challenging, as symptoms of delirium such as inattention, cognitive dysfunction, and altered level of consciousness, are also features of dementia. Because DSD is associated with poorer clinical outcomes than dementia alone, detecting delirium is important for reducing morbidity and mortality in this population. We review a number of delirium screening instruments that have shown promise for use in DSD, including the 4-DSD, combined Six Item Cognitive Impairment Test (6-CIT) and 4 'A's Test (4AT), Confusion Assessment Method (CAM), and the combined UB2 and 3D-CAM (UB-CAM). Each has advantages and disadvantages. We then describe the operationalization of a CAM-based approach in a current ECT in dementia project as an example of modifying an existing instrument for patients with moderate to severe dementia. Ultimately, any instrument modified will need to be validated against a standard clinical reference, in order to fully establish its sensitivity and specificity in the moderate to severe dementia population. Future work is greatly needed to advance the challenging area of accurate identification of delirium in moderate or severe dementia. [ABSTRACT FROM AUTHOR]

Background: Studies related to tube feeding in people with dementia (PWD) remain a contested topic, neglecting the importance of speech-language therapists’ (SLTs) role in dysphagia management. Furthermore, SLT practices and beliefs regarding tube feeding in people with advanced dementia in an upper-middle-income country, such as South Africa, are unexplored. Objective: This study aimed to determine the practices and beliefs of SLTs in South Africa regarding tube feeding placement in PWD. Method: A self-compiled online survey was distributed using social media platforms and was completed by 83 South African SLTs with experience in swallowing and feeding management of PWD. Results: Most SLTs (78.8%) strongly believed they play a vital role in the decision-making regarding feeding tube insertion in PWD. This role is often met with several challenges, such as limited support from other healthcare professionals. Speech-language therapists with more experience and increased involvement in palliative care appeared to be more confident in supporting and counselling families of PWD on tube feeding. Many SLTs still recommend tube feeding despite its known negative consequences for PWD. Conclusion: The findings indicate a need for continued professional development for South African SLTs on feeding decisions in advanced dementia to increase knowledge and confidence in clinical practice. Speech-language therapists require guidelines by professional bodies and further dialogue amongst healthcare professionals to guide difficult feeding decisions in people with advanced dementia.

Background: People living with advanced dementia risk being seen as someone without personhood in contemporary societies, an understanding that has been described and challenged for decades in dementia scholarly literature. Such perception can be characterised as forms of existential dehumanisation, which still asserts itself in dementia care practices, adversely affecting the ethical and caring aspects of such care.Aim: To challenge dehumanisation in dementia care, we must first learn to recognise what foster it in caring relations. Thus, the aim of our study is to identify existing perceptions of care recipients living with advanced dementia, which elicit dehumanising attitudes among formal caregivers.Research design: We conducted an integrative review based on Whittemore and Knafl’s updated methodology. This allowed us to identify and analyse 26 articles incorporating both qualitative- and quantitative studies as well as theoretical- and grey literature all describing perceptions of care recipients living with dementia that lead to dehumanisation.Ethical considerations: Studying the darker sides in caring relations was to be beneficial in improving dementia care practices.Findings: Through an analytical process five themes that can sprout dehumanising attitudes in caring relations were identified, which include perceiving people living with advanced dementia as (1) absurd, (2) shadow, (3) perilous, (4) void, or (5) repugnant. We argue that these perceptions can be seen as unintentional and stem from a misled embodied perception, which caregivers should learn to recognise and consequently be able to resist through virtue ethics.Conclusion: Our study indicates that challenging dehumanisation is a practical matter of identifying and reacting in a timely way to ones misled embodied perceptions. We suggest the five themes offer a potential means to warn formal caregivers of impending dehumanising attitudes and help them to review how they ethically are thinking and perceiving the person living with advanced dementia. [ABSTRACT FROM AUTHOR]

Objectives: Meaningful connections promote the quality of life of people living with advanced dementia in nursing homes. However, evidence internationally suggests people living with advanced dementia in nursing homes spend the majority of time alone, with little contact with anyone. Frontline care workers are in powerful positions to meaningfully engage with residents, yet research to date has not focused on their experiences. The aim of this study was to explore the experiences of nursing home staff, specifically, what care workers feel enables them to meaningfully engage with residents living with advanced dementia.Methods/design: Semi-structured interviews were conducted with 21 staff from seven nursing homes. Inductive thematic analysis was used.Results: Four themes were important for facilitating care workers to meaningfully engage with residents with advanced dementia: support from managers and nurses, support from experienced care workers, a caring culture and an appropriate physical environment.Conclusion: Effective leadership was the key thread that ran throughout. It was evident that meaningfully engaging with residents with advanced dementia was hard, particularly for new or inexperienced care workers. Those with experience (of care work and the residents they cared for), as well as those in formal leadership positions played key roles in facilitating care workers to: perceive it was their role to connect, understand, accept and empathise with residents, understand the importance of getting to know residents' and express their own caring attributes. Future research should focus on empirically testing leadership models that promote meaningful engagement. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To describe and compare the use of antidepressants between Black or African descent and White nursing facility residents with moderate to severe cognitive impairment. DESIGN: This was a secondary data analysis using baseline data from the Function and Behavior Focused Care for Nursing Facility Residents with Dementia randomized control trial. SETTING: Participants were recruited from 10 urban and two rural nursing facilities from Maryland. METHODS: Participants had to be 55 years of age or older, English-speaking, reside in long-term care at time of recruitment, and score a 15 or less on the Mini Mental-State Examination. A total of 336 residents participated at baseline. Data were collected by a research evaluator through observation, proxy report from staff caring for the resident the day of testing, and patient charts. MAIN OUTCOMES: A significant difference of antidepressant use between Black or African descent and White nursing facility residents with moderate to severe cognitive impairment would be noted when controlling for depression, age, gender, functional status, agitation, and number of co-morbidities. RESULTS: In adjusted models, Black or African descent residents were less likely to be prescribed antidepressants compared with White residents. CONCLUSION: Racial differences were noted regarding antidepressant use among nursing facility residents with moderate to severe cognitive impairment, but it is unknown if race could impact prescribing practices when indications for use are known. Further research is needed to ascertain if knowing the specific indications for use might contribute to racial disparities with antidepressant prescribing in nursing facility residents with moderate to severe cognitive impairment. [ABSTRACT FROM AUTHOR]

Background: The Mini Suffering State Examination (MSSE) has been explicitly recommended to assess suffering in dementia patients. This study aimed to develop a German version of the MSSE and assess its psychometric properties involving people with advanced dementia (PAD) in a nursing home setting.Methods: The MSSE was translated into German, and 95 primary nurses administered it cross-sectionally to 124 PAD in Zurich, Switzerland. The psychometric properties of the German MSSE version were calculated for this population.Results: The mean age of the PAD was 83.3 years (SD = 9.1, range = 55-102 years), and 98 of them (79.0%) were women. The Kuder-Richardson Formula 20 coefficient for the entire scale (0.58), the eight items relating to objective health conditions (0.39), and the professional and family estimation of the patient's suffering (0.64) indicated low internal consistency. A confirmatory factor analysis indicated an unsatisfactory fit to a one-factor structure, with a comparative fit index and root mean square error of approximation of 0.71 and 0.08, respectively, and a Tucker-Lewis index of 0.64. The MSSE total score was significantly but moderately correlated with the total scores of the Symptom Management-End-of-Life with Dementia (SM-EOLD) scale (Pearson's correlation coefficient (r) = -0.44; p < 0.05), the physical suffering scores (r = 0.41; p < 0.05), and the psychological suffering scores (r = 0.55; p < 0.05).Conclusions: The German version of the MSSE questionnaire did not perform well in the nursing home setting involving PAD. The instrument had low internal consistency, doubtful validity, and could not discriminate between suffering and other distressing symptoms. We do not recommend its use in this population. [ABSTRACT FROM AUTHOR]

Aim: To describe and discuss clinical strategies for nurses working in partnership with substitute decision‐makers for people living with advanced dementia. Background: By providing person‐centred care to patients living with advanced dementia, nurses are positioned to work in partnership with substitute decision‐makers who make healthcare decisions related to advanced care. Because the experience of being substitute decision‐makers is complex and stressful, nurses need skillsets for working in partnership with substitute decision‐makers. Design: In this discursive paper, an innovative framework for working in partnership with substitute decision‐makers is proposed. Method: Evidence‐based findings from a systematic review provided five domain foci for the partnership framework. In each domain, two clinical strategies were discursively proposed. Clinical strategies were hypothesised from research findings and insights from the authors' nursing experiences. Then, topical literature was searched, and findings were used to support the discursively argued strategies. Discussion: To deal with complexities and reduce stress for substitute decision‐makers, an innovative Nurse–Substitute Decision‐Maker Partnership Framework for use in the context of advanced dementia is proposed and discussed. The partnership framework consists of five domains: Building trust, Exploring emotions, Translating quality of life, Encouraging proactivity and Negotiating families. Within these domains, ten strategies to support the practices of clinical nurses to work in partnership with substitute decision‐makers are discussed. Relevance to Clinical Practice: In the framework, the ten clinical nursing strategies are designed to provide targeted care to substitute decision‐makers in areas that are known to cause complexity and stress to them. The Nurse–Substitute Decision‐Maker Partnership Framework has been designed to improve nurse–substitute decision‐maker partnerships and reduce the stress experienced by substitute decision‐makers as they work through the complexities associated with advanced dementia. [ABSTRACT FROM AUTHOR]

To realize patients' preferences for home death, this study aimed to identify factors associated with family caregiver burden of home-dwelling patients with advanced dementia and examine its relationship with end-of-life care treatment decisions. A prospective cohort study. Patient-family caregiver dyads enrolled in a home-based palliative care program for patients with advanced dementia, with family caregiver burden assessed using the Zarit Burden Interview (ZBI) on enrolment, were included. Independent variables included sociodemographic data, patients' clinical phase, symptom severity, quality of life, informal paid help availability, and community resources utilized. Dependent variable was continuous ZBI scores and ZBI scores dichotomized into <24 and ≥24 for predicting depression risk. Place of death and interventions received 2 weeks before death were also collected. Data were analyzed using multivariate linear and logistic regression. From October 2014 to December 2020, a total of 377 family caregivers were assessed with ZBI. Median score was 25 (IQR 15-36), and 54.4% of them were at risk of depression. Younger family caregivers had higher ZBI scores (β = −0.22, 95% CI –0.38, −0.07), with the depression risk doubling for family caregivers aged <60 years (OR 2.13, 95% CI 1.33, 3.43). Absence of informal paid help also increased the ZBI scores (β = −9.04, 95% CI –14.86, −3.22) and depression risk (OR 2.50, 95% CI 1.03, 6.09). In addition, caregivers' ZBI scores increased with patients' neuropsychiatric symptom severity (β = 0.49, 95% CI 0.08, 0.89), and caregivers of clinically unstable patients had a higher depression risk (OR 1.80, 95% CI 1.03, 3.12). Baseline caregiver burden was not associated with treatment decisions made at the end of life. Younger family caregivers caring for clinically unstable patients with severe neuropsychiatric symptoms experienced greater burden without informal paid help. For end-of-life care at home in advanced dementia to be tenable, relevant national agencies and stakeholders are recommended to work collectively to support family caregivers holistically. [ABSTRACT FROM AUTHOR]

The response to feeding needs in advanced dementia patients is a subject of ethical inquiry. Advanced dementia is the debilitating result of a range of neurodegenerative diseases. As this terminal illness progresses, patients develop mild to severe dysphagia that can make swallowing difficult. Of the two available options, artificial tube feeding or oral hand feeding, an estimated one-third of these patients will receive artificial tube feeding. However, observational studies have failed to validate the clinical benefits of tube feeding. Ethics of care, the feminist philosophical perspective, and Ubuntu philosophy offer arguments for the choice of oral hand-feeding as a preferrable first option by caregivers as far as possible. These moral theories acknowledge that human beings can be dependent for long periods, mostly early and later years of life. Both views reflect an approach that draws people into a system of interdependent caring relationships. They encourage hand feeding as a way of exhibiting solidarity and respecting human dignity even at the end of life. [ABSTRACT FROM AUTHOR]

Background: Patients with advanced dementia are commonly hospitalized in acute care wards, yet there is limited data regarding the end-of-life (EOL) care delivered to this population. The aim of the study was to examine EOL care delivered to patients with advanced dementia hospitalized on acute wards as reported by physicians and nurses. Methods: Participants were physicians and nurses from medical and surgical wards of two tertiary hospitals in Israel. Participants completed a self-report questionnaire evaluating EOL care experiences, knowledge, performance, assessment, communication, and perceived futile care regarding patients with dementia. Results: The questionnaire was completed by 315 providers. There were 190 medical ward respondents and 125 from general surgical wards. Of them, 48.6% recognized dementia as a terminal disease, while 26.0% of the participants reported that they knew the end-of-life preferences for less than 10% of their patients. Among the providers, 53.3% reported that end-of-life ward discussions took place only when there was a life-threatening situation and 11.1%–16.5% never engaged in end-of-life communication regarding EOL patient's preferences, appointing an attorney for the patient, disease trajectory or the essence of palliative care, with patients or their representatives. Only 17.1% reported "never" performing care they considered to be futile for patients with advanced dementia. Controlling for gender, age, role, position (senior/junior), and exposure to patients with advanced dementia, surgical ward respondents reported performing less EOL care than medical ward respondents in almost all aspects of palliative care. Conclusions: Despite growing attention, a significant portion of staff in acute care wards do not report applying EOL care to patients with advanced dementia in clinical practice, especially surgical ward staff. [ABSTRACT FROM AUTHOR]

Slawomir Tobis,1 Agnieszka Neumann-Podczaska,2 Lyudmila Yermukhanova,3 Gulnara Sultanova,4 Gulnara Kurmanalina,5 Kerbez Kimatova,3 Marzena Dworacka,6 Katarzyna Wieczorowska-Tobis2 1Department of Occupational Therapy, Poznan University of Medical Sciences, Poznan, Poland; 2Geriatric Unit, Department and Chair of Palliative Medicine, Poznan University of Medical Sciences, Poznan, Poland; 3Department of Public Health and Health Care, West Kazakhstan Marat Ospanov State Medical University, Aktobe, Kazakhstan; 4West Kazakhstan Marat Ospanov State Medical University, Aktobe, Kazakhstan; 5Department of Internal Medicine, West Kazakhstan Marat Ospanov State Medical University, Aktobe, Kazakhstan; 6Department of Pharmacology, Poznan University of Medical Sciences, Poznan, PolandCorrespondence: Slawomir TobisDepartment of Occupational Therapy, Poznan University of Medical Sciences, ul. Swiecickiego 6, 60-781 Poznan, PolandTel +48 61 8546573Email stobis@ump.edu.plPurpose: The medical students’ attitude toward pain in people with advanced dementia, while constituting an important factor in care, has rarely been assessed to date. The aim of our study was thus to perform such assessment in medical students in Kazakhstan, to enable an improvement of the existing curriculum (like we previously did in Poland).Materials and Methods: We analyzed the knowledge about pain using a short anonymous questionnaire, which was completed by 112 students of the Medical University of Aktobe, Kazakhstan.Results: On average, students listed symptoms of 1.4 ± 1.2 (out of 6 analyzed) pain areas (median 2.0). The symptoms related to changes in mental status were suggested the most often (57 students: 50.9%). The students who indicated these symptoms also listed a higher number of symptoms from the remaining domains (1,1 ± 1.0 [median 1.0] vs 0.6 ± 0.8 [median 0.0]; p< 0.01). Observational methods in the assessment of the severity of pain in people with dementia were indicated by 44 students (39.3%), but only one participant (0.9%) was able to name an observational scale for pain assessment. Correct answers regarding pain treatment rules were presented by 18 students (16.0%), and the answers of the next 47 participants (42.0%) were very general but suggested the same treatment no matter what the cognitive status.Conclusion: The study revealed gaps in the knowledge of Kazakh medical students regarding pain in advanced stages of dementia. Demographic changes, combined with the coexistence of pain with dementia, indicate that medical students worldwide must have sufficient knowledge and skills to adequately care for the continually growing number of people with these conditions. It is imperative in countries like Kazakhstan, where the dementia burden was unrecognized until now, but it will blow up in the near future.Keywords: education, pain, advanced dementia, medical students, knowledge

Abstract Background The knowledge about the experience of informal caregivers who provide care to people with moderate to advanced dementia in a domestic home setting is limited. A consequence of long hours of caregiving in addition to dealing with normal challenges of daily living is their experience of a poor quality of life. Some of their experiences may be described in terms of a feeling of powerlessness to make changes during care provision. This feeling may also suggest an experience of moral distress. The aim of this systematic review is to synthesise qualitative evidence relating to these experiences. Methods This review adopts a narrative synthesis approach. A search will be conducted for studies written in the English language in the bibliographic databases MEDLINE Complete, CINAHL, EMBASE, PsycINFO, Web of Science and Academic Search Complete covering periods from 1984 to present. Included studies will be qualitative or mixed-methods designs. The search terms will be related to dementia and caregivers, and the process will be focused on dementia at the moderate to the advanced stages within the domestic home setting. Reference lists of included papers will also be searched for additional relevant citations. Search terms and strategies will be checked by two independent reviewers. The identification of abstracts and full texts of studies will be done by the author, while the quality and the risk of bias will also be checked by the two independent reviewers. Discussion Psychological distress is cited as an experience reported within informal caregiving. For the caregiver, it is associated with a negative impact on general health. To date, no synthesis exists on the specific experience of informal caregiving for people with moderate to advanced dementia within the domestic home setting. This review considers that variation of accounts contributes to how the informal caregivers’ general experience is explored in future research. This may enable gaps in current knowledge to be highlighted within the wider context of caregiving in the domestic home setting. Systematic review registration This review is registered with PROSPERO ( CRD42020183649 ).