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.

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.

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.

Achieving consensus and controversy around applicability of palliative care to dementia.

BACKGROUND: People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and recommendations, but the domain concerning the applicability of palliative care to dementia required revision. METHODS: To examine in detail, the opinions of the international panel of 64 experts around the applicability of palliative care, we explored feedback they provided in the Delphi process. To examine which experts found it less important or less applicable, ordinal regression analyses related characteristics of the panelists to ratings of overall importance of the applicability domain, and to agreement with the domain's four recommendations. RESULTS: Some experts expressed concerns about bringing up end-of-life issues prematurely and about relabeling dementia care as palliative care. Multivariable analyses with the two outcomes of importance and agreement with applicability indicated that younger or less experienced experts and those whose expertise was predominantly in dementia care found palliative care in dementia less important and less applicable. CONCLUSIONS: Benefits of palliative care in dementia are acknowledged by experts worldwide, but there is some controversy around its early introduction. Further studies should weigh concerns expressed around care receiving a "palliative" label versus the benefits of applying palliative care early.

Palliative care and quality of life for people with dementia: medical and psychosocial interventions.

BACKGROUND: Despite mounting evidence that principles of palliative care are appropriate in care for individuals with dementia they are often not applied. As a result, patients with dementia are often exposed to burdensome interventions that have little or no benefit and are not provided with psychosocial treatments. METHODS: Recommendations for applying palliative care principles in caring for people with dementia are provided, based on the WHO definition of palliative care, our clinical experience and some key literature reports. RESULTS: People with a diagnosis of an irreversible dementia such as Alzheimer's disease (AD) and their families are rarely informed that this is a terminal disease and palliative care principles are not discussed with them. They are applicable early in the course of illness when the person can still make end-of-life decisions. Palliative care can be used in conjunction with other therapies and services, such as hospice care that provide relief from pain and other distressing symptoms. The care should include keeping people with dementia involved in meaningful activities which decrease or eliminate behavioral symptoms of dementia. CONCLUSIONS: Educating families and professionals about palliative care is important as many professionals and non-professionals believe that this approach intends to hasten death, instead of affirming life and regarding dying as a normal process. Living, not just existing, with a dementing illness involves encouraging the person to continue to be involved in meaningful activities. Medical interventions should be compatible with goals of care and balance benefits and burdens for each intervention taking into consideration severity of dementia.

White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care.

BACKGROUND: Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia. AIM: To define optimal palliative care in dementia. METHODS: Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries drafted a set of core domains with salient recommendations for each domain. We invited 89 experts from 27 countries to evaluate these in a two-round online survey with feedback. Consensus was determined according to predefined criteria. The fourth round involved decisions by the core team, and the fifth involved input from the European Association for Palliative Care. RESULTS: A total of 64 (72%) experts from 23 countries evaluated a set of 11 domains and 57 recommendations. There was immediate and full consensus on the following eight domains, including the recommendations: person-centred care, communication and shared decision-making; optimal treatment of symptoms and providing comfort (these two identified as central to care and research); setting care goals and advance planning; continuity of care; psychosocial and spiritual support; family care and involvement; education of the health care team; and societal and ethical issues. After revision, full consensus was additionally reached for prognostication and timely recognition of dying. Recommendations on nutrition and dehydration (avoiding overly aggressive, burdensome or futile treatment) and on dementia stages in relation to care goals (applicability of palliative care) achieved moderate consensus. CONCLUSION: We have provided the first definition of palliative care in dementia based on evidence and consensus, a framework to provide guidance for clinical practice, policy and research.

Nursing home residents dying with dementia in Flanders, Belgium: a nationwide postmortem study on clinical characteristics and quality of dying.

OBJECTIVES: There is a lack of large-scale, nationwide data describing clinical characteristics and quality of dying of nursing home residents dying with dementia. We set out to investigate quality of end-of-life care and quality of dying of nursing home residents with dementia in Flanders, Belgium. DESIGN/SETTING/PARTICIPANTS: To obtain representativity, we conducted a postmortem study (2010) using random cluster sampling. In selected nursing homes, all deceased residents with dementia in a period of 3 months were reported. For each case, a structured questionnaire was filled in by the nurse most involved in care, the family physician, and the nursing home administrator. We used the Cognitive Performance Scale and Global Deterioration Scale to assess dementia. Main outcome measures were health status, clinical complications, symptoms at the end of life, and quality of dying. MEASUREMENTS: Health status, clinical complications, symptoms at the end of life, and quality of dying. RESULTS: We identified 198 deceased residents with dementia in 69 nursing homes (58% response rate). Age distribution was the same as all deceased residents with dementia in Flanders, 2010. Fifty-four percent had advanced dementia. In the last month of life, 95.5% had 1 or more sentinel events (eg, eating/drinking problems, febrile episodes, or pneumonia); most frequently reported symptoms were pain, fear, anxiety, agitation, and resistance to care. In the last week, difficulty swallowing and pain were reported most frequently. Pressure sores were present in 26.9%, incontinence in 89.2%, and cachexia in 45.8%. Physical restraints were used in 21.4% of cases, and 10.0% died outside the home. Comparing stages of dementia revealed few differences between groups regarding clinical complications, symptoms, or quality of dying. CONCLUSION: Regardless of the dementia stage, many nursing home residents develop serious clinical complications and symptoms in the last phase of life, posing major challenges to the provision of optimum end-of-life care.

Effects of Namaste Care on residents who do not benefit from usual activities.

Namaste Care is a program designed to offer meaningful activities to nursing home residents with advanced dementia or those who cannot be engaged in traditional activities. This 7-day-a-week program is staffed by specially trained nursing assistants who provide activities of daily living in an unhurried manner, with a ''loving touch'' approach to care. The program takes place in a room with lowered lighting, soft music playing, and the scent of lavender. Analyses of Minimum Data Set data before the program were implemented and after residents were involved in the program for at least 30 days showed a decrease in residents' withdrawal, social interaction, delirium indicators, and trend for decreased agitation. Namaste Care helps families feel that in spite of the many losses experienced because of the disease process, something special can still help their loved one to feel comforted, cared for, and cared about in a unique loving environment.

Hospice access for individuals with dementia.

Involvement in a hospice program is important because it may allow individuals with dementia to delay or prevent institutionalization as well as provide psychosocial support for their families. Once used mostly by patients with a terminal cancer, now more than one half of the hospice patients have diagnoses other than cancer. Yet hospice is still underused for individuals dying with advanced dementia. We conducted a pilot study of hospice agencies to determine barriers and characteristics of dementia hospice enrollment. Using a mailed questionnaire and interview, we looked at demographics, accessibility, training, referral sources, and marketing. Our analysis divided the agencies based on dementia census and availability to non-Medicare eligible individuals. Results showed hospices having Bridge and Transition programs had on average 4 times higher Alzheimer's disease (AD) and dementia census than hospices without these programs. The highest rated barriers to hospice use for individuals with dementia were prognosis, education, and finance.

Evaluations of end of life with dementia by families in Dutch and U.S. nursing homes.

BACKGROUND: The End-of-Life in Dementia (EOLD) scales comprise the most specific set of instruments developed for evaluations of patients' end of life by their families. It is not known whether the EOLD scales are useful for cross-national comparisons. METHODS: We used a mortality follow-back design in multi-center studies in the Netherlands (pilot study 2005-2007) and the U.S.A. (1999), and we compared EOLD Satisfaction With Care (SWC; last three months of life), Symptom Management (SM; last three months) and Comfort Assessment in Dying (CAD) scores for 54 Dutch and 76 U.S. nursing home residents. RESULTS: SWC total scores did not differ significantly between the Dutch and U.S. studies (31.9, SD 4.7 versus 30.4, SD 6.1), but three of ten items were rated more favorable for Dutch residents, as were SM total scores (29.1, SD 9.2 versus 20.4, SD 10.6). CAD total scores did not differ (32.0, SD 5.4 versus 30.5, SD 5.9, respectively), but the "well-being" subscale was rated more favorably for Dutch residents. Results were similar after adjustment for demographics and dementia severity. CONCLUSION: The Dutch families rated end of life with dementia in nursing homes as somewhat better than did U.S. families. Although differences were small, the observed patterns were consistent. This suggests validity of the SM and CAD to assess differences in quality of dying and possible sensitivity to differences between countries or time frames. Larger, simultaneous, cross-national studies are needed to confirm usefulness of the scales and to detect areas which need improvement in the respective countries.

The validity and reliability of scales for the evaluation of end-of-life care in advanced dementia.

The lack of valid and reliable instruments designed to measure the experiences of older persons with advanced dementia and those of their health care proxies has limited palliative care research for this condition. This study evaluated the reliability and validity of 3 End-of-Life in Dementia (EOLD) scales that measure the following outcomes: (1) satisfaction with the terminal care (SWC-EOLD), (2) symptom management (SM-EOLD), and (3) comfort during the last 7 days of life (CAD-EOLD). Data were derived from interviews with the health care proxies (SWC-EOLD) and primary care nurses (SM-EOLD, CAD-EOLD) for 189 nursing home residents with advanced dementia living in 15 Boston-area facilities. The scales demonstrated satisfactory to good reliability: SM-EOLD (alpha=0.68), SWC-EOLD (alpha=0.83), and CAD-EOLD (alpha=0.82). The convergent validity of these scales, as measured against other established instruments assessing similar constructs, was good (correlation coefficients ranged from 0.50 to 0.81). The results of this study demonstrate that the 3 EOLD scales demonstrate "internal consistency" reliability and demonstrate convergent validity, and further establish their utility in palliative care dementia research.

Advanced dementia research in the nursing home: the CASCADE study.

Despite the growing number of persons with advanced dementia, and the need to improve their end-of-life care, few studies have addressed this important topic. The objectives of this report are to present the methodology established in the CASCADE (Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life) study, and to describe how challenges specific to this research were met. The CASCADE study is an ongoing, federally funded, 5-year prospective cohort study of nursing [nursing home (NH)] residents with advanced dementia and their health care proxies (HCPs) initiated in February 2003. Subjects were recruited from 15 facilities around Boston. The recruitment and data collection protocols are described. The demographic features, ownership, staffing, and quality of care of participant facilities are presented and compared to NHs nationwide. To date, 189 resident/HCP dyads have been enrolled. Baseline data are presented, demonstrating the success of the protocol in recruiting and repeatedly assessing NH residents with advanced dementia and their HCPs. Factors challenging and enabling implementation of the protocol are described. The CASCADE experience establishes the feasibility of conducting rigorous, multisite dementia NH research, and the described methodology serves as a detailed reference for subsequent CASCADE publications as results from the study emerge.