Advanced Dementia Care Research Articles

Quasi-experimental evaluation of a multifaceted intervention to improve quality of end-of-life care and quality of dying for patients with advanced dementia in long-term care institutions

Background: Improvement in the quality of end-of-life care for advanced dementia is increasingly recognized as a priority in palliative care. Aim: To evaluate the impact of a multidimensional intervention to improve quality of care and quality of dying in advanced dementia in long-term care facilities. Design: Quasi-experimental study with the intervention taking place in two long-term care facilities versus usual care in two others over a 1-year period. The intervention had five components: (1) training program to physicians and nursing staff, (2) clinical monitoring of pain using an observational pain scale, (3) implementation of a regular mouth care routine, (4) early and systematic communication with families about end-of-life care issues with provision of an information booklet, and (5) involvement of a nurse facilitator to implement and monitor the intervention. Quality of care was assessed with the Family Perception of Care Scale. The Symptom Management for End-of-Life Care in Dementia and the Comfort Assessment in Dying scales were used to assess the quality of dying. Participants: A total of 193 residents with advanced dementia and their close family members were included (97 in the intervention group and 96 in the usual care group). Results: The Family Perception of Care score was significantly higher in the intervention group than in the usual care group (157.3 vs 149.1; p = 0.04). The Comfort Assessment and Symptom Management scores were also significantly higher in the intervention group. Conclusions: Our multidimensional intervention in long-term care facilities for patients with terminal dementia resulted in improved quality of care and quality of dying when compared to usual care.

Examining trust in health professionals among family caregivers of nursing home residents with advanced dementia.

In a context of increasing emphasis on shared decision-making and palliative care in dementia, research on family caregivers' trust in health professionals in advanced dementia is surprisingly scant. The aim of the present study was to assess trust in nursing home health professionals of family caregivers of nursing home residents with advanced dementia, and possible correlates, such as family caregivers' satisfaction, involvement in care, care burden and patients' symptom burden. A cross-sectional study was carried out using structured questionnaires administered through the telephone. Generalized estimating equation analyses with adjustment for nursing home clustering were applied to assess the most important associations with family caregivers' trust. A total of 214 family caregivers of persons with dementia residing in 25 nursing homes participated in the study. The majority of the participants (67%) were women and adult children (75%). The majority of the family caregivers trusted physicians, nurses and nurses' aides at a moderate-to-high level. Approximately half to one-third reported moderate-to-low levels of trust. Higher levels of trust were associated with more positive care outcomes, such as higher family satisfaction with care and more positive evaluations of physician-family communication. The present study showed the importance of family caregivers trusting nursing home health professionals for their experiences as caregivers. Although causation cannot be established, increased family caregivers' trust in nursing home health professionals by improving communication and exchange of information might provide a good basis for providing optimal palliative care in advanced dementia. Geriatr Gerontol Int 2017; 17: 2466-2471.

Consensus statement of the International Summit on Intellectual Disability and Dementia related to end-of-life care in advanced dementia.

Adults with intellectual disability are affected by dementia at equivalent and elevated rates, many surviving into advanced age. End of life care and support considerations come into play among these individuals when most are in the advanced stage of dementia. A preliminary report summarizing available literature and making initial recommendations was developed by a workgroup, reviewed by all conference participants and then was finalized by the workgroup. The International Summit on Intellectual Disability and Dementia produced a report on End of life care in advanced dementia that provides a synthesis statement which encompasses defining the state of advanced dementia, proposes use of palliative care services (including hospice) and recommends special efforts for enabling advanced directives and advance care planning prior to the extensive progression of dementia. The Summit further recommended that when aiding adults with advanced dementia, the following be undertaken: integrative efforts between intellectual disability and palliative care providers, specialized training for carers on end of life care and supports, and involvement of adults with intellectual disability early on in their advance care planning. The Consensus recommendations will ensure greater and more appropriate support at end of life for persons with intellectual disabilities and advanced dementia.

Palliative Care for Advanced Dementia: Nursing Home Staff Knowledge and Attitudes (S714)

Palliative Care for Advanced Dementia: Nursing Home Staff Knowledge and Attitudes (S714)

Achieving Prudent Dementia Care (Palliare): An International Policy and Practice Imperative.

This paper examines the provision of integrated advanced dementia care within seven European countries and critically reviews the potential contribution of the Prudent Healthcare perspective as a starting point for reform. Progressive efforts to innovate, promote quality and integrate care are tempered with the reality of resource constraints. Some policy makers in Europe and North America have turned their attention to the principles of Prudent Healthcare as a potential mechanism to maximise benefits for patients within available resources. As dementia progresses, living well requires increasing levels of support and care, people living with advanced dementia have complex health and social care needs, are highly dependent on others but are not yet at the terminal end stage of the condition. People with advanced dementia can benefit from a dementia specific palliative approach to care (Palliare), that helps them to live the best life possible for the months and often years they live with advanced dementia. It is also highly desirable to align policy innovations with integrated palliative care practice models and the education of the dementia workforce to accelerate informed improvements in advanced dementia care. There may be some coherence, at least superficially between Prudent Healthcare and integrated palliative care models such as Palliare. It is argued that for successful implementation, both require practitioners to be equipped with knowledge and skills and be empowered to deliver high quality care often within impoverished care environments. Adoption of the prudent perspective will however require development of a repertoire of approaches to hear the voice or proxy voice of people living with advanced dementia and to commit to the development and implementation of new evidence for advanced dementia practice. Evidence informing this policy debate draws upon contemporary literature and policy and the findings from research activities undertaken by the Palliare project supported through the Erasmus+ K2 Strategic Partnerships funding programme.

F10-C Launching Namaste Care in Canada: Evaluation of a Facility-Wide Education Program to Improve End-of-Life Care in Advanced Dementia

Objectives 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 in their last months of life. This presentation will provide an overview of: (a) an innovative program, called Namaste Care, for residents who are dying with dementia; and (b) a facility-wide education program that was conducted to launch the program in Canada. Methods This study used a multiple methods survey design to evaluate the education program that was conducted in two LTC homes in Canada; one each of Ontario and Saskatchewan. The education program consisted of multiple sessions over a 2-day period for staff as well as an open public lecture for family, friends and others. We collected survey data from 44 LTC staff (e.g., personal support workers, licensed nurses, recreation staff), 25 in Ontario and 19 in Saskatchewan; and 44 family members and others (n= 21 from Ontario, 23 from Saskatchewan). Results The majority of participants rated the training program as excellent, stating “it’s just basic human care”. All participants stated that they now understand the purpose of Namaste Care. Most participants stated that they learned how to interact with residents in the Namaste room and the types of programming that are offered. Similarly, participants who attended the public lecture stated that they were very satisfied with the education, stating that the public lecture helped them learn more about how the program can be implemented. Participants in both groups suggested having follow-up sessions with a ‘report back’ about how the program impacts resident outcomes. Conclusions These study findings support the use of a facility-wide educational program to help launch a new innovation in LTC. The majority of participants were very satisfied with the education, providing suggestions for ongoing engagement throughout the implementation process.

Quality of care for people with dementia and professional caregivers' perspectives regarding palliative care in Japanese community care settings.

Palliative care for dementia includes psychosocial interventions as first-line treatment for challenging behaviour. However, the national dementia plan in Japan contradicts recommendations for palliative care for dementia. This study aimed to examine the association between care quality for patients with dementia and professional caregivers' perspectives regarding palliative care for dementia in Japanese community care settings. In total, 2116 professional caregivers from 329 agencies (217 in-home long-term care support providers; 29 small-scale, multiple home-care providers; and 83 group homes) in Tokyo prefecture, Japan, completed cross-sectional, paper-based questionnaires about 3603 people diagnosed with dementia, in May 2016. Quality of care measures included physical restraint and antipsychotic medication use and quality of life. Patients' quality of life was assessed via the Japanese version of the Alzheimer's Disease Health-related Quality of Life scale. The Japanese version of the Questionnaire on Palliative Care for Advanced Dementia was used to assess professional caregivers' knowledge and attitudes regarding palliative care for dementia. Professional caregivers' knowledge and attitudes regarding palliative care for dementia were positively associated with quality of life in patients with dementia. Physical restraint and antipsychotic medication were used regardless of professional caregivers' knowledge and attitudes. Professional caregivers' perspectives regarding palliative care for dementia could have exerted a positive effect on quality of life in patients with dementia. A national strategy for advocacy and the protection of adults is required to integrate several laws and guidelines and prevent the use of antipsychotics as a form of chemical restraint. Copyright © 2016 John Wiley & Sons, Ltd.

Association of Increasing Use of Mechanical Ventilation Among Nursing Home Residents With Advanced Dementia and Intensive Care Unit Beds

Mechanical ventilation may be lifesaving, but in certain persons, such as those with advanced dementia, it may prolong patient suffering without a clear survival benefit. To describe the use and outcomes of mechanical ventilation and its association with the increasing numbers of intensive care unit (ICU) beds in the United States for patients with advanced dementia residing in a nursing home 120 days before that hospital admission. This retrospective cohort study evaluated Medicare beneficiaries with advanced dementia hospitalized from January 1, 2000, to December 31, 2013, using the Minimum Data Set assessments linked with Medicare part A claims. A hospital fixed-effect, multivariable logistic regression model examined the effect of changes in ICU beds within individual hospitals and the likelihood of receiving mechanical ventilation, controlling for patients' demographic characteristics, function, and comorbidities. Mechanical ventilation. From 2000 to 2013, a total of 635 008 hospitalizations of 380 060 eligible patients occurred (30.5% male and 69.5% female; mean [SD] age, 84.4 [7.4] years). Use of mechanical ventilation increased from 39 per 1000 hospitalizations in 2000 to 78 per 1000 hospitalizations in 2013 (P < .001, test of linear trend). As the number of ICU beds in a hospital increased over time, patients with advanced dementia were more likely to receive mechanical ventilation (ie, adjusted odds ratio per 10 ICU bed increase, 1.06; 95% CI, 1.05-1.07). In 2013, hospitals in the top decile in the number of ICU beds were reimbursed $9611.89 per hospitalization compared with $8050.24 per hospitalization in the lower decile (P < .001) without an improvement in 1-year mortality (65.2% vs 64.6%; P = 54). Among hospitalized nursing home residents with advanced dementia, we found an increase in the use of mechanical ventilation over time without substantial improvement in survival. This increase in the use of mechanical ventilation was associated with an increase in the number of ICU beds within a hospital.

The extended palliative phase of dementia - An integrative literature review.

This article presents an integrative literature review of the experience of dementia care associated with the extended palliative phase of dementia. The aim was to highlight how dementia is defined in the literature and describe what is known about the symptomatology and management of advanced dementia regarding the needs and preferences of the person with dementia and their family carer/s. There was no consistent definition of advanced dementia. The extended palliative phase was generally synonymous with end-of-life care. Advanced care planning is purported to enable professionals to work together with people with dementia and their families. A lack of understanding of palliative care among frontline practitioners was related to a dearth of educational opportunities in advanced dementia care. There are few robust concepts and theories that embrace living the best life possible during the later stages of dementia. These findings informed our subsequent work around the concept, 'Dementia Palliare'.

Fidelity to a behavioral intervention to improve goals of care decisions for nursing home residents with advanced dementia.

Ensuring fidelity to a behavioral intervention implemented in nursing homes requires awareness of the unique considerations of this setting for research. The purpose of this article is to describe the goals of care cluster-randomized trial and the methods used to monitor and promote fidelity to a goals of care decision aid intervention delivered in nursing homes. The cluster randomized trial tested whether a decision aid for goals of care in advanced dementia could improve (1) the quality of communication and decision-making, (2) the quality of palliative care, and (3) the quality of dying for nursing home residents with advanced dementia. In 11 intervention nursing homes, family decision-makers for residents with advanced dementia received a two-component intervention: viewing a video decision aid about goals of care choices and then participating in a structured decision-making discussion with the nursing home care plan team, ideally within 3 months after the decision aid was viewed. Following guidelines from the National Institutes of Health Behavior Change Consortium, fidelity was assessed in study design, in nursing home staff training for intervention implementation, and in monitoring and receipt of the intervention. We also monitored the content and timing of goals of care discussions. Investigators enrolled 151 family decision-maker/resident dyads in intervention sites; of those, 136 (90%) received both components of the intervention, and 92%-99% of discussions addressed each of four recommended content areas-health status, goals of care, choice of a goal, and treatment planning. A total of 94 (69%) of the discussions between family decision-makers and the nursing home care team were completed within 3 months. The methods we used for intervention fidelity allowed nursing home staff to implement a goals of care decision aid intervention for advanced dementia. Key supports for implementation included design features that aligned with nursing home practice, efficient staff training, and a structured guide for goals of care discussions between family decision-makers and staff. These approaches may be used to promote fidelity to behavioral interventions in future clinical trials.

Palliative care for advanced dementia in Japan: knowledge and attitudes.

This study examined factors contributing to the knowledge and attitudes of nursing home staff regarding palliative care for advanced dementia in Japan. A cross-sectional survey of 275 nurses and other care workers from 74 long-term care facilities was conducted across three prefectures in August 2014. The Japanese versions of the Questionnaire on Palliative Care for Advanced Dementia (qPAD) and Frommelt Attitudes Toward Care of the Dying scale, Form B (FATCOD-B-J) were used. Greater knowledge was exhibited among nursing home staff in facilities that established a manual for end-of-life care. Higher levels of positive attitudes were observed among nursing home staff in facilities that had established a manual and those in facilities with a physician's written opinions on end-of-life care. An organisational effort should be explored to establish end-of-life care policies among nursing home staff for advanced dementia.

Pragmatic cluster randomised controlled trial of facilitated family case conferencing compared with usual care for improving end of life care and outcomes in nursing home residents with advanced dementia and their families: the IDEAL study protocol.

BackgroundCare for people with advanced dementia requires a palliative approach targeted to the illness trajectory and tailored to individual needs. However, care in nursing homes is often compromised by poor communication and limited staff expertise. This paper reports the protocol for the IDEAL Project, which aims to: 1) compare the efficacy of a facilitated approach to family case conferencing with usual care; 2) provide insights into nursing home- and staff-related processes influencing the implementation and sustainability of case conferencing; and 3) evaluate cost-effectiveness.Design/MethodsA pragmatic parallel cluster randomised controlled trial design will be used. Twenty Australian nursing homes will be randomised to receive either facilitated family case conferencing or usual care.In the intervention arm, we will train registered nurses at each nursing home to work as Palliative Care Planning Coordinators (PCPCs) 16 h per week over 18 months. The PCPCs’ role will be to: 1) use evidence-based ‘triggers’ to identify optimal time-points for case conferencing; 2) organise, facilitate and document case conferences with optimal involvement from family, multi-disciplinary nursing home staff and community health professionals; 3) develop and oversee implementation of palliative care plans; and 4) train other staff in person-centred palliative care.The primary endpoint will be symptom management, comfort and satisfaction with care at the end of life as rated by bereaved family members on the End of Life in Dementia (EOLD) Scales. Secondary outcomes will include resident quality of life (Quality of Life in Late-stage Dementia [QUALID]), whether a palliative approach is taken (e.g. hospitalisations, non-palliative medical treatments), staff attitudes and knowledge (Palliative Care for Advanced Dementia [qPAD]), and cost effectiveness. Processes and factors influencing implementation, outcomes and sustainability will be explored statistically via analysis of intervention ‘dose’ and qualitatively via semi-structured interviews. The pragmatic design and complex nature of the intervention will limit blinding and internal validity but support external validity.DiscussionThe IDEAL Project will make an important contribution to the evidence base for dementia-specific case conferencing in nursing homes by considering processes and contextual factors as well as overall efficacy. Its strengths and weaknesses will both lie in its pragmatic design.Trial registrationAustralian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12612001164886. Registered 02/11/2012.

Development of a model for integrated care at the end of life in advanced dementia: A whole systems UK-wide approach

Background: The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. Aim: To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. Design: A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Setting/participants: Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process. Results: A total of 29 statements were agreed and mapped to individual, group, organisational and economic/political levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers. Conclusion: Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia.

Tensions and ambiguities: A qualitative study of final year adult field nursing students' experiences of caring for people affected by advanced dementia in Wales, UK

Rising dementia prevalence means that general nurses globally will encounter more people affected by advanced dementia. Advanced dementia care is profoundly complex yet there is a paucity of research exploring how general nursing students experience and thus learn to care for those affected. To explore final year nursing students' (adult field) experiences of caring for people affected by advanced dementia. A qualitative design was adopted. The setting was Wales, UK. Eleven final year nursing undergraduates (adult field). Data were collected using digitally recorded one-to-one in-depth interviews in 2013 and analysed using thematic analysis. Participants' experiences fell within three main themes: they can be quite challenging; a lot of dementia patients are seen as hazards and it's not all about doing stuff. Participants aspired to person-centred care. However, they felt insufficiently prepared for what they believed was knowledgeable work requiring interpersonal competence and confidence. Participants appreciated that many practitioners, their clinical educators, were insufficiently prepared for advanced dementia care. The study provided further evidence of the complexity of caring for those with advanced dementia and associated theory, practice and policy gaps. There are important implications for education in terms of curriculum development and learning from and in practice.

Behavioral Symptoms Among Patients Before and After Implementation of a Specialized Advanced Dementia Care Program in a Nursing Home

Behavioral Symptoms Among Patients Before and After Implementation of a Specialized Advanced Dementia Care Program in a Nursing Home

Development and Testing of a Decision Aid on Goals of Care for Advanced Dementia

ObjectivesDecision aids are effective to improve decision-making, yet they are rarely tested in nursing homes (NHs). Study objectives were to (1) examine the feasibility of a goals of care (GOC) decision aid for surrogate decision-makers (SDMs) of persons with dementia; and (2) to test its effect on quality of communication and decision-making. DesignPre-post intervention to test a GOC decision aid intervention for SDMs for persons with dementia in NHs. Investigators collected data from reviews of resident health records and interviews with SDMs at baseline and 3-month follow-up. SettingTwo NHs in North Carolina. ParticipantsEighteen residents who were over 65 years of age, had moderate to severe dementia on the global deterioration scale (5, 6, or 7), and an English-speaking surrogate decision-maker. Intervention(1) GOC decision aid video viewed by the SDM and (2) a structured care plan meeting between the SDM and interdisciplinary NH team. MeasurementsSurrogate knowledge, quality of communication with health care providers, surrogate-provider concordance on goals of care, and palliative care domains addressed in the care plan. ResultsEighty-nine percent of the SDMs thought the decision aid was relevant to their needs. After viewing the video decision aid, SDMs increased the number of correct responses on knowledge-based questions (12.5 vs 14.2; P < .001). At 3 months, they reported improved quality of communication scores (6.1 vs 6.8; P = .01) and improved concordance on primary goal of care with NH team (50% vs 78%; P = .003). The number of palliative care domains addressed in the care plan increased (1.8 vs 4.3; P < .001). ConclusionsThe decision-support intervention piloted in this study was feasible and relevant for surrogate decision-makers of persons with advanced dementia in NHs, and it improved quality of communication between SDM and NH providers. A larger randomized clinical trial is underway to provide further evidence of the effects of this decision aid intervention.

Challenging Common Practice in Advanced Dementia Care

Challenging Common Practice in Advanced Dementia Care

Development and Testing of a Decision Aid on Goals of Care for Advanced Dementia

Development and Testing of a Decision Aid on Goals of Care for Advanced Dementia

Educating families about end-of-life care in advanced dementia: acceptability of a Canadian family booklet to nurses from Canada, France, and Japan

The families of people with late-stage dementia need to be informed about the course of the dementia and the comfort/palliative care option. A booklet was written for that purpose and can be provided to family members by physicians and nurses. The acceptability of the booklet for nurses was tested in Canada (French and English version), France (French Canadian version) and Japan (translated and adapted version). Overall, 188 nurses completed a survey questionnaire. The booklet was accepted best in Canada and less so in France and Japan. Despite regional variation, the majority of the nurses perceived the booklet as useful for families. The French and Japanese nurses also reported a greater need for palliative care education in advanced dementia. The booklet may help nurses educate families about end-of-life issues in dementia palliative care, but local adaptation of the booklet content and physician engagement are necessary.

The Palliative Efficacy and Mechanism of Action of CAM Modalities for Advanced Dementia Care (TH317-B)

Objectives 1. Describe the biologic mechanism of action underlying manual CAM modalities. 2. Compare the palliative efficacy of two commonly used CAM modalities. Background. Despite limited empirical support, complementary therapies (CAM) have become an important part of palliative care for older adults with dementia. Previous studies evaluating CAM in older adult patients with end stage dementia are limited and tend to focus on subjective measures or behavioral indicators of distress. Knowledge regarding the specificity and mechanism of action underlying these interventions is lacking, particularly the complex interactions among biological and behavioral outcomes. Research Objectives. The aim of this proof of concept trial was to evaluate the neuroendocrine effect of two commonly used CAM modalities (reflexology and Swedish massage) in a sample of end stage dementia patients and explore the palliative efficacy of these modalities for reducing pain and behavioral symptoms of agitation. CAM modalities are hypothesized to promote palliation of symptoms in dementia patients by down-regulating hypothalamic/pituitary/adrenal (HPA)/sympathetic nervous system (SNS) activity through the stimulation of C-fiber polymodal nociceptors. Method. Using a within-subject longitudinal design, biologic and behavioral measures were collected four times daily from 60 adults with advanced stage dementia aged 70 to 102. Subjects were followed across three conditions: no treatment, four weekly sessions of reflexology, and four weekly sessions of Swedish massage. Measures included observations of behavior and pain, and collection of salivary assays for measurement of HPA/SNS activity across the study period. Mixed-model analysis was used to test the association between biologic and behavioral measures. Result. Improvements were noted in measures of HPA/SNS activity (F 1⁄47.5, P 1⁄4.008), and observed pain (F 1⁄4 3.6, P 1⁄4 .031) in response to both modalities. Conclusion. These findings contribute a preliminary understanding of the palliative benefit of CAM and new data on underlying mechanisms by which improvements are achieved. Implications for Research, Policy, or Practice. As a cure is not imminent, there is a critical need to advance efficient nonpharmacologic strategies to manage the palliative needs that are almost universal among dementia patients.