Palliative Care In Dementia Research Articles

Identifying palliative care needs in people with dementia.

Dementia is now recognized as a progressive life-limiting illness where many patients can benefit from access to palliative care. The present review has focused on three areas namely, advanced care planning in supporting palliative care for dementia, hospice provision for people with dementia and provision of care within family home. In advanced care planning, there is little research on systematically developed and implemented advance care planning interventions or whether they achieve desired outcomes for end-of-life care. There is limited research on hospice-based care for patients with dementia and most studies are U.S. based. Equally studies exploring how family carers can be supported and facilitated to care at home for the person with dementia to the end of life are exploratory rather than determining what factors may be important. There are relatively few studies, especially quantitative studies or intervention studies being carried out to determine most effective means of providing palliative care for people with dementia, particularly with respect to advanced care planning, the provision of hospice-based care and support at home. Despite increased public awareness of dementia as a terminal illness, more research is required to support patients with dementia and their families at the end of life.

End-of-life care: A qualitative study comparing the views of people with dementia and family carers

Background: In recent years, UK policy has increasingly recognised the importance of end-of-life care in dementia. While professional consensus on optimal palliative care in dementia has been reported, little is known about the perspectives of people with dementia and family carers. Aim: To compare the views of people with dementia and family carers of people with dementia (current and recently bereaved) on optimal end-of-life care. Design: Qualitative interviews (32) and a focus group were conducted. Data were thematically analysed. Setting/participants: Participants comprised people with early stage dementia, living at home in the north-east of England (n = 11); and current and bereaved carers (n = 25) from six services providing end-of-life care in England. Findings: Seven areas were identified as important to end-of-life care for people with dementia and/or family carers. People with dementia and carers expressed the need for receiving care in place, ensuring comfort and a skilled care team. However, they disagreed about the importance of planning for the future and the role of families in organising care and future decision-making. Conclusion: Further comparison of our findings with expert consensus views highlighted key areas of divergence and agreement. Discordant views concerning perceptions of dementia as a palliative condition, responsibility for future decision-making and the practical co-ordination of end-of-life care may undermine the provision of optimal palliative care. Professionals must explore and recognise the individual perspectives of people with dementia and family carers.

Palliative dementia care: lessons from a European perspective.

It is ambitious to say that this viewpoint is able to provide a European perspective. Defining ‘Europe’ can mean anything between 28 countries within the European Union (notwithstanding the impending the impending UK ‘Brexit’) and up to 50 countries if you include all dependent territories with different health systems, policies and priorities To some extent, the future direction of palliative care for dementia patients in Europe has taken a positive turn and there has been strong innovation in cross-national working in this area, some linked to the work of the European Association for Palliative Care.

The development of palliative care for dementia

Palliative care, which is the basis of hospice care, was originally developed for patients with terminal cancer.

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.

A facilitated approach to family case conferencing for people with advanced dementia living in nursing homes: perceptions of palliative care planning coordinators and other health professionals in the IDEAL study.

Palliative care for nursing home residents with advanced dementia is often sub-optimal due to poor communication and limited care planning. In a cluster randomized controlled trial, registered nurses (RNs) from 10 nursing homes were trained and funded to work as Palliative Care Planning Coordinators (PCPCs) to organize family case conferences and mentor staff. This qualitative sub-study aimed to explore PCPC and health professional perceptions of the benefits of facilitated case conferencing and identify factors influencing implementation. Semi-structured interviews were conducted with the RNs in the PCPC role, other members of nursing home staff, and physicians who participated in case conferences. Analysis was conducted by two researchers using a thematic framework approach. Interviews were conducted with 11 PCPCs, 18 other nurses, eight allied health workers, and three physicians. Perceived benefits of facilitated case conferencing included better communication between staff and families, greater multi-disciplinary involvement in case conferences and care planning, and improved staff attitudes and capabilities for dementia palliative care. Key factors influencing implementation included: staffing levels and time; support from management, staff and physicians; and positive family feedback. The facilitated approach explored in this study addressed known barriers to case conferencing. However, current business models in the sector make it difficult for case conferencing to receive the required levels of nursing qualification, training, and time. A collaborative nursing home culture and ongoing relationships with health professionals are also prerequisites for success. Further studies should document resident and family perceptions to harness consumer advocacy.

Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development

BackgroundWhen entering the dying phase, the nature of physical, psychosocial and spiritual care needs of people with dementia and their families may change. Our objective was to understand what needs to be in place to develop optimal palliative care services for the terminal phase in the face of a small evidence base.MethodsIn 2015–2016, we performed a mixed-methods qualitative study in which we (1) analysed the domains and recommendations from the European Association for Palliative Care (EAPC) dementia white paper and identified those with particular relevance for the terminal phase; (2) performed a series of focus group discussions with Dutch family caregivers of people with dementia in variable stages; (3) conducted interviews with experts involved in 15 special forms of terminal care for people with dementia in five countries. The terminal phase was defined as dying but because of the difficulty predicting it, we included advanced dementia. We initially analysed the three parts separately, followed by an integrated analysis of (1)-(3) to inform service development.Results(1) The EAPC domain of “avoiding overly aggressive, burdensome, or futile treatment” was regarded of particular relevance in the terminal phase, along with a number of recommendations that refer to providing of comfort. (2) Families preferred continuity in care and living arrangements. Despite a recognition that this was a time when they had complex support needs, they found it difficult to accept involvement of a large team of unfamiliar (professional) caregivers. Mostly, terminal care was preferred at the place of residence. (3) The expert interviews identified preferred, successful models in which a representative of a well-trained team has the time, authority and necessary expertise to provide care and education of staff and family to where people are and which ensure continuity of relationships with and around the patient.ConclusionA mobile team that specializes in palliative care in dementia and supports professional and family caregivers is a promising model. Compared to transfer to a hospice in the last weeks or days, it has the potential to address the priorities of families and patients for continuity of care, relationships and specialist expertise.

Palliative Care for Dementia: A Randomized Controlled Study of a Replicable and Financially Viable Model for Organizations Providing Caregiver Support (SA518A)

Palliative Care for Dementia: A Randomized Controlled Study of a Replicable and Financially Viable Model for Organizations Providing Caregiver Support (SA518A)

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.

General practitioners' perceptions of the barriers and solutions to good-quality palliative care in dementia.

The general practitioner (GP) is in a pivotal position to initiate and adapt care for their patients living with dementia. This study aimed to elicit GPs' perceptions of the potential barriers and solutions to the provision of good-quality palliative care in dementia in their practices. A postal survey of GPs across Northern Ireland was conducted with open-ended items soliciting for barriers in their practices and possible solutions; 40.6% (138/340) were returned completed. Barriers to palliative care in dementia were perceived to be a dementia knowledge deficit for healthcare staff and the public, a resource shortfall within the GP practice and community, poor team coordination alongside inappropriate dementia care provision, and disagreements from and within families. These findings have significant implications for educators and clinicians as enhanced dementia education and training were highlighted as a strong agenda for GPs with the suggestions of dementia awareness programmes for the public.

Health care professionals' perspectives of advance care planning for people with dementia living in long-term care settings: a narrative review of the literature.

This comprehensive synthesis of published literature from a team in Northern Ireland focused on the perspectives of healthcare professionals in relation to ACP for people with dementia living in long-term care settings. From the 14 papers discussed, the authors identified that people with dementia are often not recognised as having a terminal illness. Four key themes were identified: ■ Early integration and planning for palliative care in dementia is important. ■ Healthcare professionals' perspectives on ACP are influenced by ethical and moral concerns including presumptions regarding capacity of the person with dementia towards ACP and the impact of the increased role of the family in the decision-making processes. ■ Challenges in communicating with people who have dementia and their families. ■ A need for improvement in healthcare professionals' knowledge of the disease trajectory of dementia with emphasis on end of life care, and a greater understanding of the process of ACP itself. This would assist them in engaging in ACP discussions.

Health care professionals’ perspectives of advance care planning for people with dementia living in long-term care settings: A narrative review of the literature

This paper provides an overview of the evidence on the perspective of health care professionals (HCPs) in relation to advance care planning (ACP) for people with dementia, residing in long-term care settings. A narrative approach was adopted to provide a comprehensive synthesis of previously published literature in the area. A systematic literature search identified 14 papers for inclusion. Following review of the studies four themes were identified for discussion; Early integration and planning for palliative care in dementia; HCPs ethical and moral concerns regarding ACP; Communication challenges when interacting with the person with dementia and their families and HCPs need for education and training. Despite evidence, that HCPs recognise the potential benefits of ACP, they struggle with its implementation in this setting. Greater understanding of dementia and the concept of ACP is required to improve consistency in practice. Synthesising the existing evidence will allow for further understanding of the key issues, potentially resulting in improved implementation in practice.

Palliative care in dementia: literature review of nurses' knowledge and attitudes towards pain assessment.

Pain is prevalent among older people, yet is often under-recognised and undertreated in people with dementia. The nurse has a central role in identifying and appropriately assessing pain in order to provide effective treatment. Research however suggests there are significant deficits in this area. To explore the evidence on nurses' knowledge and attitudes to pain assessment in older people with dementia. A systematic narrative review of peer-reviewed articles published between 2000 and 2014. Seven electronic data bases (CINAHL, MEDLINE, PsycInfo, Wiley, Pubmed, ProQuest and OVID) were searched and articles focusing on nurses knowledge and attitudes on pain assessment towards people with dementia. Research participants within the studies reviewed were to include registered nurses involved in the assessment and management of pain in older adults with dementia from across all healthcare settings (e.g. dementia units, nursing homes, community and acute settings). Data were systematically analysed from 11 papers. Using an inductive approach for thematic content analysis informed by the theory of planned behaviour, five themes were identified. These included: 1) Challenges in diagnosing pain in dementia 2) Inadequacies of pain assessment tools 3) Time constraints and workload pressures 4) Lack of interdisciplinary teamwork and communication 5) Training and education. Nurses play a key role in the effective management of pain through the use of pain assessment tools, behavioural observation, and analgesic choice. Pain assessment in dementia remains challenging for nurses due to the complexity and individualisation of pain behaviours. The accessibility of appropriate training, workforce stability and a standardised approach to pain assessment are key to the successful management of pain in older people with dementia.

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

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. 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. 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. 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.

Symptom Assessment for a Palliative Care Approach in People With Dementia Admitted to Acute Hospitals: Results From a National Audit.

As the prevalence of dementia increases, more people will need dementia palliative and end-of-life (EOL) care in acute hospitals. Published literature suggests that good quality care is not always provided. To evaluate the prescription of antipsychotics and performance of multidisciplinary assessments relevant to palliative care for people with dementia, including those at EOL, during hospital admission. As part of a national audit of dementia care, 660 case notes were reviewed across 35 acute hospitals. In the entire cohort, many assessments essential to dementia palliative care were not performed. Of the total sample, 76 patients died, were documented to be receiving EOL care, and/or were referred for specialist palliative care. In this cohort, even less symptom assessment was performed (eg, no pain assessment in 27%, no delirium screening in 68%, and no mood or behavioral and psychological symptoms of dementia in 93%). In all, 37% had antipsychotic drugs during their admission and 71% of these received a new prescription in hospital, most commonly for "agitation." This study suggests a picture of poor symptom assessment and possible inappropriate prescription of antipsychotic medication, including at EOL, hindering the planning and delivery of effective dementia palliative care in acute hospitals.

The unmet palliative care needs of those dying with dementia.

An estimated 33.9 million people are living with dementia worldwide. The overall estimated median survival time from onset of dementia to death is 4.1 years for men and 4.6 years for women, with longer survival times in those with early-onset dementia. Much has been discussed about the needs of this vulnerable group of people particularly in terms of their health-care and end-of-life care (EoLC) needs. However, the literature suggests that people with end-stage dementia are still not receiving adequate or appropriate EoLC. Difficulty diagnosing dementia, a stigma surrounding the disease, lack of education of the dementia disease process and the ability to identify complications encountered at end-stage dementia by health-care providers, families and carers are some of the factors preventing those with dementia receiving effective EoLC. Great strides have been made to improve dementia palliative care; however, this cohort of patients still receive fewer referrals to appropriate palliative care services than other terminally ill patients.

Predictors of spiritual care provision for patients with dementia at the end of life as perceived by physicians: a prospective study.

BackgroundSpiritual caregiving is part of palliative care and may contribute to well being at the end of life. However, it is a neglected area in the care and treatment of patients with dementia. We aimed to examine predictors of the provision of spiritual end-of-life care in dementia as perceived by physicians coordinating the care.MethodsWe used data of the Dutch End of Life in Dementia study (DEOLD; 2007–2011), in which data were collected prospectively in 28 Dutch long-term care facilities. We enrolled newly admitted residents with dementia who died during the course of data collection, their families, and physicians. The outcome of Generalized Estimating Equations (GEE) regression analyses was whether spiritual care was provided shortly before death as perceived by the on-staff elderly care physician who was responsible for end-of-life care (last sacraments or rites or other spiritual care provided by a spiritual counselor or staff). Potential predictors were indicators of high-quality, person-centered, and palliative care, demographics, and some other factors supported by the literature. Resident-level potential predictors such as satisfaction with the physician’s communication were measured 8 weeks after admission (baseline, by families and physicians), physician-level factors such as the physician’s religious background midway through the study, and facility-level factors such as a palliative care unit applied throughout data collection.ResultsAccording to the physicians, spiritual end-of-life care was provided shortly before death to 20.8% (43/207) of the residents. Independent predictors of spiritual end-of-life care were: families’ satisfaction with physicians’ communication at baseline (OR 1.6, CI 1.0; 2.5 per point on 0–3 scale), and faith or spirituality very important to resident whether (OR 19, CI 5.6; 63) or not (OR 15, CI 5.1; 47) of importance to the physician. Further, female family caregiving was an independent predictor (OR 2.7, CI 1.1; 6.6).ConclusionsPalliative care indicators were not predictive of spiritual end-of-life care; palliative care in dementia may need better defining and implementation in practice. Physician-family communication upon admission may be important to optimize spiritual caregiving at the end of life.

Consensus on quality indicators to assess the organisation of palliative cancer and dementia care applicable across national healthcare systems and selected by international experts

BackgroundLarge numbers of vulnerable patients are in need of palliative cancer and dementia care. However, a wide gap exists between the knowledge of best practices in palliative care and their use in everyday clinical practice. As part of a European policy improvement program, quality indicators (QIs) have been developed to monitor and improve the organisation of palliative care for patients with cancer and those with dementia in various settings in different European countries.MethodA multidisciplinary, international panel of professionals participated in a modified RAND Delphi procedure to compose a set of palliative care QIs based on existing sets of QIs on the organisation of palliative care. Panellists participated in three written rounds, one feedback round and one meeting. The panel’s median votes were used to identify the final set of QIs.ResultsThe Delphi procedure resulted in 23 useful QIs. These QIs represent key elements of the organisation of good clinical practice, such as the availability of palliative care teams, the availability of special facilities to provide palliative care for patients and their relatives, and the presence of educational interventions for professionals. The final set also includes QIs that are related to the process of palliative care, such as documentation of pain and other symptoms, communication with patients in need of palliative care and their relatives, and end-of-life decisions.ConclusionInternational experts selected a set of 23 QIs for the organisation of palliative care. Although we particularly focused on the organisation of cancer and dementia palliative care, most QIs are generic and are applicable for other types of diseases as well.

OPTIMAL PALLIATIVE CARE IN DEMENTIA: BARRIERS AND FACILITATORS IN A LOW-RESOURCE SETTING

Project Description: Palliative care needs of people with dementia are not widely recognised. Many of them suffer unnecessary pain and undergo needless interventions which do not improve the quality of care. The care is often uncoordinated. Prolonged and progressive decline in functions complicate the matters further. According to the WHO, palliative care is an approach to enhance the quality of life of patients and their families which consists of early identification, assessment and treatment of pain and other problemsphysical, psychosocial and spiritual. There are several guidelines which describe the criteria and domains to define optimal palliative care in dementia. Most, if not all of these guidelines are from developed country settings with high resources. Multidisciplinary assessments, anticipatory care, interventions which only improve the quality of life, avoiding unnecessary transfers, advanced planning, shared decision making and adequate pain management are the core features of these guidelines. In this study we attempt to explore how relevant these criteria are in a low resource setting in terms of attitudes, finances as well as trained professionals. We reveal the barriers in providing optimal palliative care but also describe the facilitators when there are good models of practice to follow. The study included medical and nursing staff; trained and untrained carers who work in dementia care homes and health care personnel from palliative care settings. The study consisted of two stages. Semistructured interview of the sixty participants based on existing guidelines was followed by focus groups in the second stage which discussed the themes emerging from the interviews. Qualitative data categorisation was done using a thematic analytic approach. Many do not view dementia as a terminal condition. Close involvement of family in the care of patients is facilitatory in improving the care quality. Multidisciplinary models of working are gaining attention in dementia care. Most participants believe educational and training programmes for qualified and unqualified staff impart skills, change attitudes and also help in exploring their own beliefs and attitudes towards death and terminal illnesses. There are several other findings which may be relevant in high resource settings as well. These findings will be discussed in detail.

When do people with dementia die peacefully? An analysis of data collected prospectively in long-term care settings

Background: Little is known about dying peacefully with dementia in long-term care facilities. Dying peacefully may be influenced by characteristics of the palliative care provided and characteristics of the long-term care setting. If so, dying peacefully may serve as a quality indicator for palliative care in dementia. Aim: This study aims to describe whether residents with dementia in Dutch long-term care facilities die peacefully and to assess which characteristics of the resident, the palliative care provided and the facilities are associated with dying peacefully. Design and Setting: We analysed existing data from the Dutch End of Life in Dementia study, collected between January 2007 and July 2010 in 34 long-term care facilities in the Netherlands. We used descriptive statistics and Generalised Estimating Equation models. Results: The sample consisted of 233 residents with dementia. Family members indicated that the resident died peacefully in 56% of cases. This percentage ranged from 17% to 80% across facilities. Residents were more likely to die peacefully if they had an optimistic attitude, if family found that there were enough nurses available and if residents died in facilities with a moderate (versus no) perceived influence of religious affiliation on end-of-life decision-making policies. Conclusions: Only half of the residents with dementia in Dutch long-term care facilities die peacefully, as perceived by relatives. In addition to residents’ optimistic attitude, facility characteristics are associated with dying peacefully, which suggests that ‘the percentage of relatives who indicate that the patient died peacefully’ can function as a quality indicator.