Navigating dementia feeding decisions in Asia: a mixed methods study of caregivers.

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.

Prediction of survival of persons with advanced dementia using the advanced dementia prognostic tool: A 2-year prospective study.

BACKGROUND: 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. METHODS: The study predicted the 2-year mortality of 115 persons with AD using the ADEPT score. RESULTS: 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. CONCLUSIONS: 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.

Humans: An integrative review exploring dehumanisation in 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.

Family relationships as a source of narrative identity of people with advanced dementia.

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.

Supporting the "hallway residents": a qualitative descriptive study of staff perspectives on implementing the Namaste Care intervention in long-term care.

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.

Predicting mortality in patients diagnosed with advanced dementia presenting at an acute care hospital: the PROgnostic Model for Advanced DEmentia (PRO-MADE).

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.

'Making the most of time during personal care': nursing home staff experiences of meaningful engagement with residents with advanced dementia.

OBJECTIVES: 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. METHODS: Semi-structured interviews, supplemented by informal conversations, were conducted with 21 staff from seven nursing homes. Inductive thematic analysis identified themes in the accounts. RESULTS: 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). CONCLUSION: 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.

Identifying Delirium in Persons With Moderate or Severe Dementia: Review of Challenges and an Illustrative Approach.

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.

Leading by example: Nursing home staff experiences of what facilitates them to meaningfully engage with residents with advanced dementia.

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.

Facilitated case conferences on end-of-life care for persons with advanced dementia-a qualitative study of interactions between long-term care clinicians and family members.

BACKGROUND: Prognostic uncertainty and the need for proxy decision-making owing to cognitive impairment in advanced dementia, adds complexity to end-of-life care planning within the long-term care setting. Case conferences provide a structure to facilitate difficult conversations and an opportunity for family and clinicians to engage in prospective planning, and reach agreement on goals of end-of-life care. OBJECTIVE: To explore interactions between multidisciplinary healthcare clinicians and families during facilitated case conferences on end-of-life care for residents with advanced dementia. METHODS: A qualitative approach was used. Transcripts of audio-recorded case conferences facilitated by a trained registered nurse were coded by two independent researchers and analysed inductively. Transcripts were selected from an available pool until thematic saturation was reached. Emerging themes were confirmed with the wider research group. RESULTS: Thematic saturation was reached after 25 transcripts. An overarching theme concerned the ways in which clinicians and families bridged medical and person-centred perspectives. Subthemes included: details of day-to-day care versus establishing overall goals of care; expression of emotion versus retreat from emotion; and missed opportunities versus expressed cues. Successful facilitation served to 'bridge the gap' between family and clinicians. CONCLUSION: Facilitation of case conferences for residents with advanced dementia should focus on ensuring that: clinicians do not miss opportunities to discuss end-of-life care; discussions on the minutiae of care regularly return to the resident's broader goals of care; and information on dementia and treatments provided by clinicians is integrated with advice by family members regarding the resident's premorbid values and likely preferences.

A bitter pill to swallow - Polypharmacy and psychotropic treatment in people with advanced dementia.

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.

The German version of the Mini Suffering State Examination (MSSE) for people with advanced dementia living in nursing homes.

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.

Flaws in advance directives that request withdrawing assisted feeding in late-stage dementia may cause premature or prolonged dying.

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?

A framework for nurses working in partnership with substitute decision-makers for people living with advanced dementia: A discursive paper.

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.

Practitioner Bias as an Explanation for Low Rates of Palliative Care Among Patients with Advanced Dementia.

Patients with advanced dementia are less likely than those with other terminal illnesses to receive palliative care. Due to the nature and course of dementia, there may be a failure to recognize the terminal stage of the disease. A possible and under-investigated explanation for this healthcare disparity is the healthcare practitioner who plays a primary role in end-of-life decision-making. Two potential areas that might impact provider decision-making are cognitive biases and moral considerations. In this analysis, we demonstrate how the cognitive biases and moral considerations of practitioners related to clinical decision-making are inherent in clinical practice and may impact on providers' accuracy related to diagnostic and treatment related decision-making associated with patients with advanced dementia. Anchoring, default, availability, representativeness and framing biases are cognitive biases based on the "Two System Model" that relate to decision-making in end-of-life care. In patients with advanced dementia, those biases may result in a tendency to adhere to traditional mandatory care, involving an aggressive approach to care, which values saving lives at all costs, without taking into account the possible suffering and long-term consequences. Aspects such as moral sensitivity and moral courage play an important role in ethical decision-making related to advanced dementia. Investigations of clinical decision-making that include the cognitive biases and ethical considerations of practitioners might advance the comprehensive understanding of the clinical decision-making process related to care of patients with advanced dementia and promote the quality of care given to this population.

Race and prevalence of percutaneous endoscopic gastrostomy tubes in patients with advanced dementia.

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.

Managing feeding needs in advanced dementia: perspectives from ethics of care and ubuntu philosophy.

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.

Neuropsychiatric symptoms in early stage of Alzheimer's and non-Alzheimer's dementia, and the risk of progression to severe dementia.

BACKGROUND: Neuropsychiatric symptoms (NPSs) in early dementia have been suggested to predict a higher risk of dementia progression. However, the literature is not yet clear whether the risk is similar across Alzheimer's dementia (AD) and non-Alzheimer's dementia (non-AD), as well as across different NPSs. This study examined the association between NPSs in early dementia and the risk of progression to severe dementia, specifically in AD and non-AD, as well as across various NPSs. METHOD: This cohort study included 7,594 participants who were ≥65 years and had early dementia (global Clinical Dementia Rating [CDR] = 1). Participants completed Neuropsychiatric-Inventory-Questionnaire at baseline and were followed-up almost annually for progression to severe dementia (global CDR = 3) (median follow-up = 3.5 years; interquartile range = 2.1-5.9 years). Cox regression was used to examine progression risk, stratified by AD and non-AD. RESULTS: The presence of NPSs was associated with risk of progression to severe dementia, but primarily in AD (HR 1.4, 95% confidence interval [CI]: 1.1-1.6) and not in non-AD (HR 0.9, 95% CI: 0.5-1.5). When comparing across various NPSs, seven NPSs in AD were associated with disease progression, and they were depression, anxiety, apathy, delusions, hallucinations, irritability and motor disturbance (HR 1.2-1.6). In contrast, only hallucinations and delusions were associated with disease progression in non-AD (HR 1.7-1.9). CONCLUSIONS: NPSs in early dementia-especially among individuals with AD-can be useful prognostic markers of disease progression. They may inform discussion on advanced care planning and prompt clinical review to incorporate evidence-based interventions that may address disease progression.

Trust of Nursing Home Staff Caring for Residents with Advanced Dementia: A Qualitative Descriptive Study of Family Caregivers' Perspectives.

BACKGROUND/OBJECTIVES: Studies of interpersonal trust within nursing homes (NHs) is limited. This study aimed to describe the perspectives of interpersonal trust in NH staff among family caregivers of residents with advanced dementia. Additionally, comparisons of Black and White caregivers' perspectives were also explored. DESIGN: We used data generated from a parent study, Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life (ADVANCE) to examine the experience of trust from the family caregivers' perspectives. PARTICIPANTS: Data generated from interviews with 44 family caregivers of residents with advanced dementia (Black n = 19 and White n = 25) were analyzed using thematic analysis. RESULTS/CONCLUSIONS: While both Black and White family caregivers experienced trust and mistrust, Black caregivers more often experienced differential mistrust. As differential mistrust is a new concept relative to trust, additional research is required to elucidate its meaning. DESIGN: We used data generated from a parent study, Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life (ADVANCE) to examine the experience of trust from the family caregivers' perspectives. PARTICIPANTS: Data generated from interviews with 44 family caregivers of residents with advanced dementia (Black n = 19 and White n = 25) were analyzed using thematic analysis. RESULTS/CONCLUSIONS: While both Black and White family caregivers experienced trust and mistrust, Black caregivers more often experienced differential mistrust, trust for certain staff members and mistrust of others. As differential mistrust is a new concept relative to trust, additional research is required to elucidate its meaning.

Dispelling Medico-Legal Misconceptions Impeding Use of Advance Instructions to Shorten Immersion in Deep Dementia.

Progressive dementia afflicts millions of people, ultimately entailing precipitous mental decline and years of complete dependence on others. Many people deem the prospect of serious cognitive dysfunction, helplessness, and dependence to be intolerably degrading (as well as overly burdensome on others). To avoid being mired in prolonged dementia, they prefer to hasten death by advance instructions rejecting life-sustaining medical intervention at a point of decline they define as unacceptable.Some health care providers resist implementation of such advance instructions, especially as applied to patients with dementia who are not ostensibly suffering in their demented states and no longer recall their prior instructions and the dignity concerns that underlay them. The clash between advance wishes to hasten death and some health care providers' preference to maintain the well-being of nonsuffering patients will be surfacing, in coming years, in institutional ethics committees, professional disciplinary forums, and the courts. This article defends the legal and moral status of advance instructions seeking to shorten the unwanted limbo of deep dementia.