Guidance for family about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15 year timespan.

BACKGROUND: To support family caregivers of people with dementia in end-of-life decision making, a family booklet on comfort care has been adapted and adopted by several European jurisdictions since the original publication in Canada in 2005. METHODS: We analyzed and compared the adaptations to the family booklets used in Canada, the Czech Republic, Italy, the Netherlands, the UK and Ireland that were made up to 2021. Qualitative content analysis was used to create a typology of changes to the original booklet. Interviews with the teams that adapted the booklets contributed to methodological triangulation. Further, using an established framework, we assessed whether the contents of the booklets addressed all domains relevant to optimal palliative dementia care. RESULTS: The booklets differed in the types of treatment addressed, in particular tube feeding, euthanasia, and spiritual care. There was also variability in the extent to which medical details were provided, an emphasis on previously expressed wishes in medical decision making, addressing of treatment dilemmas at the end of life, the tone of the messages (indirect or explicit) and the discussion of prognosis (as more or less positive), and the involvement of various healthcare professionals and family caregivers in care. All booklets addressed all domains of palliative dementia care. CONCLUSIONS: We identified core elements in providing information on end-of-life care to family caregivers of people with dementia as related to optimal palliative care in dementia. Additionally, local adaptations and updates are required to account for socio-cultural, clinical, and legal differences which may also change over time. These results may inform development of educational and advance care planning materials for different contexts.

Geriatric Depression and Inappropriate Medication: Benefits of Interprofessional Team Cooperation in Nursing Homes.

An investigation of inappropriate medication use in treatment of depressivity in institutionalized older adults, based on a nurse-led evaluation of functional status and depressive symptoms in nursing home residents. Methods: A cross-sectional multicenter study was performed using records from 1087 residents cared for in fifteen nursing homes (NHs) in the Czech Republic. Inclusion criteria were being a permanent resident of one of the facilities, being 60 years of age or older, having a Geriatric Depression Scale score of 6 or more, and having a Mini Mental State examination score 10 or more. The final sample for analysis included 317 depressed NH residents. Results: 52 percent of NH residents with depressivity had no antidepressant treatment. Benzodiazepines were the only medication in 16 percent of depressed residents, and were added to antidepressant treatment in 18 percent of residents. Benzodiazepine users had significantly higher GDS scores compared to non-users (p = 0.007). Conclusion: More than half of depressed NH residents remained without antidepressant treatment. Residents inappropriately treated with benzodiazepines were more depressed than residents treated with antidepressants only, or even not treated at all. Cooperation of the interprofessional team in the screening of depressive symptoms has the potential to improve the quality of care.

Palliative Care in Advanced Dementia: Comparison of Strategies in Three Countries.

Palliative care including hospice care is appropriate for advanced dementia, but policy initiatives and implementation have lagged, while treatment may vary. We compare care for people with advanced dementia in the United States (US), The Netherlands, and Israel. We conducted a narrative literature review and expert physician consultation around a case scenario focusing on three domains in the care of people with advanced dementia: (1) place of residence, (2) access to palliative care, and (3) treatment. We found that most people with advanced dementia live in nursing homes in the US and The Netherlands, and in the community in Israel. Access to specialist palliative and hospice care is improving in the US but is limited in The Netherlands and Israel. The two data sources consistently showed that treatment varies considerably between countries with, for example, artificial nutrition and hydration differing by state in the US, strongly discouraged in The Netherlands, and widely used in Israel. We conclude that care in each country has positive elements: hospice availability in the US, the general palliative approach in The Netherlands, and home care in Israel. National Dementia Plans should include policy regarding palliative care, and public and professional awareness must be increased.

Prevalence of psychotropic polypharmacy in nursing home residents with dementia: a meta-analysis.

OBJECTIVES: Nursing home (NH) residents with dementia is exposed to high rates of psychotropic prescriptions. Our objectives were to: (1) pool the prevalence estimates of psychotropic polypharmacy from the existing literature and (2) examine potentially influential factors that are related to a higher or lower prevalence. DESIGN: Meta-analysis of data collected from randomized trials, quasi-experimental, prospective or retrospective cohort, and cross-sectional studies. English-language searches of PubMed and PsycINFO were completed by November 2020. Included studies reported prevalence estimates of psychotropic polypharmacy (i.e. defined as either two-or-more or three-or-more medications concurrently) in NH residents with dementia. SETTING AND PARTICIPANTS: NH residents with dementia. MEASUREMENTS: Random-effects models were used to pool the prevalence of psychotropic polypharmacy in NH residents with dementia across studies. Estimates were provided for both two-or-more and three-or-more concurrent medications. Heterogeneity and publication bias were measured. Meta-regression examined the influence of the percentage of the sample who were male, mean age of the sample, geographic region (continent), sample size, and study year on the prevalence of psychotropic polypharmacy. RESULTS: Twenty-five unique articles were included comprising medications data from 92,370 NH residents with dementia in 12 countries. One-in-three (33%, [95% CI: 28%, 39%]) NH residents with dementia received two-or-more psychotropic medications concurrently. One-in-eight (13%, [95% CI: 10%, 17%]) received three-or-more psychotropic medications concurrently. Estimates were highly variable across both definitions of psychotropic polypharmacy (p < 0.001). Among study-level demographics, geographic region, sample size, or study year, only male sex was associated with greater use of two-or-more psychotropic medications (Unadjusted OR = 1.02, p = 0.006; Adjusted OR = 1.04, p = 0.07). CONCLUSIONS: Psychotropic polypharmacy is common among NH residents with dementia. Identifying the causes of utilization and the effects on resident health and well-being should be prioritized by federal entities seeking to improve NH quality.

Importance of Distinguishing Reactive and Proactive Aggression in Dementia Care.

Aggressive behavior is one of the most disturbing symptoms of Alzheimer disease and other progressive neurodegenerative dementias. Development of strategies for management of aggressive behaviors in people with dementia is hindered by a lack of recognition that aggression is not a uniform behavioral construct. It is possible to distinguish 2 types of aggression: reactive or impulsive aggression and proactive or premeditated aggression. Research concerning aggressive behaviors in people with dementia is hindered by scales describing behavioral symptoms of dementia which do not distinguish between reactive and proactive aggressions because they do not consider the factors leading to these behaviors. Reactive aggression is caused by lack of understanding, leading to rejection of care, while proactive aggression could be caused by a psychopathic personality, hallucinations or delusions, and other determinants. It is difficult to underestimate the importance of distinguishing reactive and proactive aggressions in people with dementia because there are different strategies that can be used for management of these behaviors. For reactive aggression, delayed treatment, distraction, improved communication, and change in treatment strategy is useful, while antipsychotic medication may be needed for treatment of proactive aggression. Dementia is increasing the risk of both types of aggressions and antidepressant treatment can be helpful. Most importantly, persons exhibiting reactive aggression should not be labeled "aggressors" because this behavior could be caused by unmet persons' needs, pain and poor communication with care providers.

Physiological and pathological functions of beta-amyloid in the brain and alzheimer's disease: A review.

Alzheimer's disease is a major health problem all over the world. The role of beta-amyloid (Aß) is at the center of investigations trying to discover the disease pathogenesis and to develop drugs for treatment or prevention on Alzheimer's disease. This review summarizes both physiological and pathological functions of Aß and factors that may participate in the disease development. Known genetic factors are trisomy of chromosome 21, mutations of presenilin 1 and 2, and apolipoprotein E4. Lifetime stresses that increase the risk of development of Alzheimer's disease are described. Another important factor is the level of education, especially of linguistic ability. Lifestyle factors include mental and physical exercise, head injury, social contacts, and diet. All these factors might potentiate the effect of aging on the brain to increase the risk of development of pathological changes. The review summarizes pathological features of Alzheimer brain, Aß plaques, neurofibrillary tangles composed of hyperphosphorylated tau, and brain atrophy. Consequences of Alzheimer's disease that are reviewed include cognitive deficit, loss of function, and neuropsychiatric symptoms. Because there is no effective treatment, many persons with Alzheimer's disease survive to severe and terminal stages which they may fear. Alzheimer's disease at this stage should be considered a terminal disease for which palliative care is indicated. Importance of advance directives, promoting previous wishes of the person who was developing dementia and who subsequently lost decision-making capacity, and limitations of these directives are discussed. Information in this review is based on author's knowledge and clinical experience that were updated by searches of PubMed.

Evaluating the feasibility and acceptability of the Namaste Care program in long-term care settings in Canada.

BACKGROUND: Residents living and dying in long-term care (LTC) homes represent one of society's most frail and marginalized populations of older adults, particularly those residents with advanced dementia who are often excluded from activities that promote quality of life in their last months of life. The purpose of this study is to evaluate the feasibility, acceptability, and effects of Namaste Care: an innovative program to improve end-of-life care for people with advanced dementia. METHODS: This study used a mixed-method survey design to evaluate the Namaste Care program in two LTC homes in Canada. Pain, quality of life, and medication costs were assessed for 31 residents before and 6 months after they participated in Namaste Care. The program consisted of two 2-h sessions per day for 5 days per week. Namaste Care staff provided high sensory care to residents in a calm, therapeutic environment in a small group setting. Feasibility was assessed in terms of recruitment rate, number of sessions attended, retention rate, and any adverse events. Acceptability was assessed using qualitative interviews with staff and family. RESULTS: The feasibility of Namaste Care was acceptable with a participation rate of 89%. However, participants received only 72% of the sessions delivered and only 78% stayed in the program for at least 3 months due to mortality. After attending Namaste Care, participants' pain and quality of life improved and medication costs decreased. Family members and staff perceived the program to be beneficial, noting positive changes in residents. The majority of participants were very satisfied with the program, providing suggestions for ongoing engagement throughout the implementation process. CONCLUSIONS: These study findings support the implementation of the Namaste Care program in Canadian LTC homes to improve the quality of life for residents. However, further testing is needed on a larger scale.

Cognitive deficits in Parkinson's disease with excessive daytime sleepiness: a systematic review.

Objectives: This systematic review synthesizes the most recent literature on neuropsychological deficits in adults with Parkinson's disease who experience excessive daytime sleepiness (EDS). Confounds and methodological limitations are explored. A framework entitled the Cascade Model of Excessive Daytime Sleepiness (CMEDS) is proposed to explain the role of EDS in contributing to cognitive impairment for patients with Parkinson's disease.Method: Systematic search through PubMed, PsychInfo and citation records. In total, 175 articles were screened for possible inclusion. Eight studies were included, encompassing 1373 patients with Parkinson's disease - 442 of whom had Parkinson's disease with EDS.Results: For Parkinson's disease patients with EDS, global deficits, executive dysfunction and deficits in processing speed were found beyond the typical cognitive phenotype of patients without EDS. Language skills, memory and visuospatial skills appeared to be similar between those with and without EDS. In untreated, de novo, patients, there were no cognitive differences between the EDS groups.Conclusion: This review suggests that Parkinson's disease patients suffering from EDS may have additional cognitive deficits globally, in executive control, and in processing speed. As suggested by the CMEDS framework, the impact of EDS on cognition may be related to Parkinson's disease pathology, comorbidities and medication use.

Review of Programs for Persons Facing Death with Dementia.

BACKGROUND: Persons with advanced dementia cannot initiate activities because of the executive dysfunction. The lack of activities was identified as one of the most important factors contributing to behavioral problems of these persons. The unmet needs were boredom/sensory deprivation, loneliness/need for social interaction, and need for meaningful activities. There is a need for activities designed specifically for residents with advanced dementia. OBJECTIVE: A description of patient's needs and of programs that intend to maintain quality of life for people with dementia and facing death. DATA SOURCES: A literature review of programs used for persons with advanced dementia and residing in long-term facilities, using the PubMed data base and collateral sources. RESULTS: Since palliative care is appropriate for persons with advanced dementia, attention has to be paid to three following important aspects of care: Medical issues, behavioral symptoms, and meaningful activities. Medical interventions should be limited to those which have more benefits than burdens, behavioral symptoms should be distinguished according to the context in which they occur, and treated by non-pharmacological interventions that involve meaningful activities. This review describes four programs that may promote the quality of life in persons with advanced dementia and facing death. They are designed for persons with advanced dementia, taking into account their functional impairments. Most of these programs involve short infrequent sessions. In contrast, Namaste Care is a daily extended program of enhanced nursing care that can provide quality of life until the last breath. CONCLUSIONS: It is possible to maintain quality life for people with advanced dementia if a special program of activities is available.

Ratings of activities of daily living in nursing home residents: comparison of self- and proxy ratings with actual performance and the impact of cognitive status.

This study was conducted to examine differences between self- and proxy ratings of activities in daily living (ADL) in nursing home residents and to compare them with actual performance. An impact of cognitive status on these ratings was also determined. Data were obtained from 164 dyads of nursing home residents (self-ratings) and their professional care providers (proxy ratings). Statistical procedures included t tests, intraclass correlations, Pearson's correlations, analysis of variance (ANOVA) and ROC curves. Paired t test provided evidence that residents in general overestimated their abilities for all ADLs (p < .01 in all cases), but a substantial subset of 54 residents, with mean MMSE of 18, agreed with their care providers. The mean MMSE score of those who overestimated their abilities was 13 (N = 57). The ANOVA revealed that greater rating differences were associated with more severe cognitive impairment (MMSE, F = 9.93, p < .001). Proxy ratings of walking were not significantly different from actual performances (p = .145), while self-ratings overestimated it (p < .001). Although residents in general overestimated their ADL abilities and results of comparison with actual performance indicated that proxies may be closer to the actual status in this population, a considerable number of those with milder cognitive impairment were able to assess their ADLs with reasonable accuracy.

Effects of the Namaste Care Family programme on quality of life of nursing home residents with advanced dementia and on family caregiving experiences: study protocol of a cluster-randomised controlled trial.

INTRODUCTION: Quality of life of people with advanced dementia living in nursing homes is often suboptimal. Family caregivers can feel frustrated with limited contact with their relatives, which results in visits that are perceived as stressful and not very meaningful. Few psychosocial interventions are specifically developed for people with advanced dementia, and actively involve family caregivers or volunteers. Also, interventions usually stop when it becomes difficult for people to participate. The Namaste Care Family programme aims to increase the quality of life of people with advanced dementia, and improve family caregiving experiences through connecting to people and making them comfortable. METHODS AND ANALYSIS: Our study will evaluate the effects of the Namaste Care Family programme on quality of life of people with advanced dementia living in nursing homes and family caregiving experiences using a cluster-randomised controlled trial. Longitudinal analyses will be performed taking into account clustering at the nursing home level. Both a cost-effectiveness and a cost-utility analysis from a societal perspective will be performed. We will modify the Namaste Care Family programme to increase family and volunteer involvement in ongoing and end-of-life care. Data collection involves assessments by family caregivers, nursing staff and elderly care physicians using questionnaires, and observations by the researchers at baseline and multiple times over 12 months. The last questionnaire will be sent up to month 24 after the death of the person with dementia. During semistructured interviews, the feasibility, accessibility and sustainability of the Namaste Care Family programme will be assessed. ETHICS AND DISSEMINATION: The study protocol is approved by the Medical Ethics Review Committee of the VU University Medical Center in Amsterdam (protocol no. 2016.399) and registered with the Nederlands Trial Register (NTR5692). The findings will be disseminated via publications in peer-reviewed journals, conference presentations and presentations for healthcare professionals where appropriate. TRIAL REGISTRATION NUMBER: NTR5692.

Behavioral Problems and Dementia.

Behavioral problems decrease quality of life of people with dementia and their care providers. Three main consequences of dementia are functional impairment and in some cases also mood disorders and psychosis. These consequences, alone or in combination, result in 3 main behavioral problems: apathy, agitation, and rejection of care/aggression. Nonpharmacologic management strategies include meaningful activities and individualized comfort care, for example, Namaste Care. If needed, pharmacologic management should concentrate on treatment of main dementia consequences, especially depression, instead of treating secondary symptoms, for example, insomnia. Use of antipsychotics should be minimized but antipsychotics may be necessary for augmentation of antidepressants.

Implementing the Namaste Care Program for residents with advanced dementia: exploring the perceptions of families and staff in UK care homes.

BACKGROUND: Increasing numbers of older people with advanced dementia are cared for in care homes. No cure is available, so research focused on improving quality of life and quality of care for people with dementia is needed to support them to live and die well. The Namaste Care programme is a multi-dimensional care program with sensory, psycho-social and spiritual components intended to enhance quality of life and quality of care for people with advanced dementia. The aim of the study was to establish whether the Namaste Care program can be implemented in UK care homes; and what effect Namaste Care has on the quality of life of residents with advanced dementia, their families and staff. This article explores the qualitative findings of the study, reporting the effect of the programme on the families of people with advanced dementia and care home staff, and presenting their perceptions of change in care. METHODS: An organisational action research methodology was used. Focus groups and interviews were undertaken pre/post implementation of the Namaste Care program. The researcher kept a reflective diary recording data on the process of change. A comments book was available to staff and relatives in each care home. Data was analysed thematically within each care home and then across all care homes. RESULTS: Six care homes were recruited in south London: one withdrew before the study was underway. Of the five remaining care homes, four achieved a full Namaste Care program. One care home did not achieve the full program during the study, and another discontinued Namaste Care when the study ended. Every home experienced management disruption during the study. Namaste Care challenged normal routinised care for older people with advanced dementia. The characteristics of care uncovered before Namaste was implemented were: chaos and confusion, rushing around, lack of trust, and rewarding care. After the programme was implemented these perceptions were transformed, and themes of calmness, reaching out to each other, seeing the person, and, enhanced well-being, emerged. CONCLUSIONS: Namaste Care can enrich the quality of life of older people with advanced dementia in care homes. The program was welcomed by care home staff and families, and was achieved with only modest expenditure and no change in staffing levels. The positive impact on residents quality of life influenced the well-being of family carers. Care staff found the changes in care enjoyable and rewarding. Namaste Care was valued for the benefits seen in residents; the improvement in relationships; and the shift towards a person-centred, relationship-based culture of care brought about by introducing the program. Namaste Care deserves further exploration and investigation including a randomised controlled trial.