Challenges for professional care of advanced dementia

Qualitative methodology based on action research identified challenges when caring for persons with advanced dementia, as perceived by key professional providers. Data collection was via five focus groups (total n  = 24) and 20 follow-up individual interviews. Participants included palliative care, aged care and dementia specialist nurses, medical specialists from an area health service, residential aged care staff and general medical practitioners. Responses emphasized the need for improved knowledge and skills, and clearer policy. Concerns included accurate assessment, especially of pain, owing to the inability of people with advanced dementia to communicate their symptoms. Assessment, managing physical and behavioural symptoms, and communicating with family presented as further challenges. Conclusions are that the need for a palliative approach to care in advanced dementia should be recognized. Aged care staff can deliver palliative care to people with advanced dementia only if the staff receive relevant education and training beyond their generalist competencies.     

Influencing factors that support and build aged care research capacity: Staff perspectives

BackgroundStrategic collaborative networks between care staff and researchers can be a powerful means of improving the provision of safe and quality care. Aged care staff hold vital information on research practicality and ease of implementation in the clinical setting. Aged care staff are best positioned to advise on a study’s feasibility in the clinical environment and for the particular residents in their care, regardless of the fact that they are often not involved in the research process.AimTo explore aged care staff attitudes towards research particularly the influencing factors that promote and sustain care staff participation in research in the residential aged care facility (RACF) setting.MethodsQualitative semi-structured interviews were conducted at two aged care facility sites in Sydney with 10 aged care staff before and after their participation in a randomised controlled trial on their ward. The interviews explored aged care staff perceptions of the importance of research, staff compliance and factors that influence research conducted in the RACF setting.FindingsAged care staff reported on the importance of conducting research in RACFs. The barriers to staff participation included insufficient time (50%), lack of belief in intervention effect (30%), deficits in research knowledge (40%) or support (30%). Research perceived as practical (40%) that could be conducted unobtrusively (60%), provided tailored education (70%) with effective communication (50%) between researcher and aged care staff, was more favourable for staff participation.DiscussionAged care staff recognised that findings from research when implemented was important for improving quality care provision but it was challenging to conduct research in the RACF setting. Implementing strategies that support aged care staff research time away from clinical tasks, access to research education and foster communication between academic and staff can improve care staff participation in research.ConclusionFocused strategies fostered by collaborative partnerships between aged care staff, academic researcher and industry management can promote and sustain the research capacity of staff caring for older people in RACFs.     

Dementia care. Part 3: end-of-life care for people with advanced dementia

End-of-life care issues for people with advanced dementia have only recently been addressed in guidance. There appear to be barriers to accessing good palliative care for people in the terminal phase of the disease. The reasons for this are multifactorial, but may be attributed to factors such as dementia not being recognized as a terminal disease like cancer, problems in recognizing the symptoms of terminal dementia, and decision-making conflicts between family caregivers and other health and social care providers. This article highlights common symptoms of advanced dementia, and the need for a palliative care approach. It also addresses specific issues in both caring for people with dementia at the end of their lives and in supporting carers.     

Barriers and facilitators to the receipt of palliative care for people with dementia: The views of medical and nursing staff

Background: The global prevalence of dementia is set to rise to almost 65 million people by 2030, providing policy makers and practitioners with significant challenges, not least within the realms of end-of-life care. The international literature would suggest that people with dementia may benefit from palliative forms of care, but evidence indicates that many fail to access such provision at the end of life. The role of the health care team is pivotal if people with dementia are to benefit from the transition to palliative care. Aim: This paper reports on qualitative research conducted in the UK that sought to explore the experiences of health care practitioners working in palliative care and sought to establish the issues relating to end-of-life care for people with dementia. Design: Eight focus groups and four individual interviews were held. Data were analysed using a thematic approach. Setting/participants: The study included palliative care practitioners (n = 58) including medical, nursing and allied health professionals. Participants were recruited from acute hospitals, general practice, hospices and specialist palliative care units in the UK. Results: Four themes were identified: Making the transition; Competence challenged; 'The long view' and Working together. Whilst there exists good practice in this area, the barriers to timely and appropriate transitions to palliative care for people with dementia and their families continue to exist. The paper concludes with recommendations for policy and practice development.     

Dementia palliative care: A multi-site survey of long term care STAFF’S education needs and readiness to change

Many people with dementia reside in long-term care, where limited staff knowledge of dementia palliative care has been identified, along with poor awareness that a palliative approach can assist in identifying unmet care needs. Evidence-based guidance in palliative care for people with dementia is available however, implementing this guidance requires staff engagement and a tailored educational approach. This pre-implementation situational analysis informed a tailored staff education intervention to support the implementation of national guidance on dementia palliative care in long term care. Using a cross-sectional study design, underpinned by the Consolidated Framework for Implementation Research, survey data were collected on site profile, staff demographics, learning needs, and readiness-to change at three residential care sites for older people in Ireland. In total, 69 staff (predominantly nurses and healthcare attendants) completed the surveys. Medication management and management of pain were the most frequently identified learning needs. Staff were confident in their ability to implement change but de-motivation and powerlessness were substantial factors as only one-third of staff were “ready for change”. Staffing levels, managing risk during change and perceived reluctance in others were common barriers. These results informed an educational intervention to address the specific care context, staff learning needs and barriers to change prior to implementation.     

A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia

Aim. This paper considers the challenges of delivering effective palliative care to older people with dementia and the possible strategies to overcome barriers to end-of-life care in these patients. Background. In UK alone, approximately 100 000 people with dementia die each year and as the number of older people increases, dementia is set to become even more prevalent. Dementia is a progressive terminal illness for which there is currently no cure. Patients dying with dementia have significant health-care needs and in recent years it has been recognised that palliative care should be made available to everyone regardless of diagnosis, as this improves comfort and quality of life. Despite this, patients dying with dementia are often still not given access to palliative care services. Method. A review of English language literature published after 1996 to the present day relating to older people with dementia during the terminal phase of their illness. Results. Twenty-nine articles met inclusion criteria for the review. Most originated from North America and UK and were mostly quantitative in nature. Four key themes were identified: difficulties associated with diagnosing the terminal phase of the illness (prognostication); issues relating to communication; medical interventions; and the appropriateness of palliative care intervention. Conclusions. This review reinforces the importance of providing appropriate palliative care to individuals suffering from end-stage dementia and identifies some of the barriers to extending such specialist palliative care provision. Relevance to practice. There is an urgent need to improve palliative care provision for older people with end-stage dementia and, in addition, more research is required on the needs of patients entering the terminal phase of dementia to assist the allocation of appropriate resources and training to ensure quality and equality in the provision of end-of-life care.     

Supporting patients who have intellectual disabilities: a survey investigating staff training needs

AIMS: This article reports on a small exploratory survey aimed at establishing the perceived training needs of palliative care staff related to supporting people with intellectual disabilities. METHODS: Questionnaires were collected from a sample of 46 palliative care staff. Respondents were asked to describe 'worrying issues' about supporting a person with intellectual disabilities. Answers were analysed using content analysis. RESULTS: Most respondents (37, 80%) highlighted communication as a concern. Other major issues included assessment and symptom control, patient comprehension, empowerment and ethical issues/consent. DISCUSSION: Communication and symptom assessment can be challenging, particularly in people with limited verbal communication skills. Palliative care staff need to be aware of the range of communication methods used by people with intellectual disabilities. CONCLUSION: There is a lack of information and training materials around intellectual disabilities for palliative care staff. This needs to be addressed. More work is needed to develop appropriate training in this area.     

Palliative care provision for people with intellectual disabilities: interviews with specialist palliative care professionals in London

Growing numbers of people with intellectual disabilities (ID) are in need of palliative care, but there is inequity of access to palliative care services for this group. This study investigates the issues and difficulties arising for palliative care staff in providing care for people with ID. Semi-structured interviews were conducted with 32 palliative care professionals in London. Factors affecting palliative care provision for people with ID included social issues (home situation and family issues), emotional and cognitive issues (fear, patient understanding, communication, cooperation and capacity to consent), problems with assessment, and the impact on staff and other patients. An underlying theme was the need to take more time and to build trust. Despite the challenges, many palliative care staff managed the care of people with ID well. The importance of collaboration with carers and ID services is highlighted. Further studies are needed to investigate how widespread the problems are.     

Can multidisciplinary guidelines improve the palliation of symptoms in the terminal phase of dementia?

Dementia is a progressive terminal disease. More than 95% of patients will require 24-hour care either in long-stay hospital wards or in nursing homes at the end of life. There are many issues in the care of patients with dementia that parallel palliative cancer care, but relatively few patients with dementia currently access palliative care. Following an initial audit that found that many patients dying with dementia had symptoms that were not palliated, multidisciplinary guidelines were developed jointly by medical and nursing staff working in psychiatry for older people, together with pharmacy and palliative care staff. Following the implementation of guidelines, there was a significant decrease in the prescribing of antibiotics in the last 2 weeks of life and patients were much more likely to be prescribed analgesia, including opiates. This small study suggests that when developed collaboratively, multidisciplinary guidelines can have a positive impact on palliative care for non-oncology patients.     

Differences in supporting families of dementia patients and cancer patients: a palliative perspective

OBJECTIVES: To investigate what staff working in close contact with patients perceive as good support of families in dementia care as compared with support of families in palliative cancer care. DESIGN AND SUBJECTS: During four national courses on dementia care and one national course on palliative cancer care, 316 and 121 participants, respectively, responded to an open-ended question: In your experience, what are the two most important measures for supporting families of dementia patients/severely ill cancer patients? Sixty-one items were coded and allocated into 10 main categories and analysed with both a qualitative and quantitative approach. RESULTS: The dominant items for both staff groups were to listen to the family member and to give information, although listening was significantly more often stressed in the palliative group (P < 0.001). The staff in dementia care stressed significantly more the importance to form support groups for families (P < 0.001), to offer respite care (P < 0.001), to educate families (P < 0.001) and to try to relieve the family's feeling of guilt (P < 0.001). In the palliative staff group, the importance of being available (P < 0.05), creating a sense of security (P < 0.001) and supporting the family after the patients death (P < 0.01) were significantly more focused on. DISCUSSION: The respondents from the dementia staff group and from the palliative cancer group stressed the importance of supporting family members. However, the type of support needed partly differs because of the different trajectories in dementia compared with severe cancer phases.     

International reflections on caring for people with advanced dementia

Dementia is causing global concern with its massive impacts on affected individuals, families, society, and national economies. As the disease progresses, patients’ needs increase in number, depth, and breadth, covering physical, psychological, social, and spiritual domains. Care varies from place to place, from country to country and from east to west. To learn from some of these variations, we explored advanced dementia care in United Kingdom and Japan. Informed by an overview of literature on care of people with advanced dementia, we reflected on direct nonparticipant observations of care in urban areas of Northern Ireland and Japan. While we identified a common purpose to address the complex needs of people living with dementia, there were differences in the approach to care. Broadly, dementia care in United Kingdom tends toward person‐centered care with a strong interest in Advance Care Planning as part of a palliative care approach. In Japan, we found less evidence of early stage palliative care and more of family‐based decision making to inform care of older people. In both countries, dementia care varies regionally, being more available in some areas than others. International knowledge exchange and further comparative studies will help to improve care for people with advanced dementia, everywhere.     

Challenges that specialist palliative care nurses encounter when caring for patients with advanced dementia

Specialist palliative care (SPC) has expanded recently in Ireland to incorporate diseases other than cancer, including dementia. Two care areas that pose specific challenges for SPC nurses when caring for people with advanced dementia are pain and nutrition/hydration. Assessment and management of pain for a patient who has advanced dementia differs greatly from that for a typical palliative care patient. Similarly, nutrition and hydration pose extraordinary ethical and practical dilemmas not encountered when caring for a patient without dementia. This paper reports a literature review which revealed that although evidence-based information related to each of these areas is available, it tends to be written from the perspective of health professionals with an interest in dementia rather than from the perspective of the SPC nurse. SPC nurses require evidence-based palliative care research to guide their practice, but such research appears to be limited for patients with advanced dementia. Knowledge from specialists in both dementia care and palliative care needs to be combined if we are to provide these patients with the best possible end-of-life care. Further research is required and evidenced-based guidelines need to be formulated.     

Older adults' attitudes to death, palliative treatment and hospice care

BACKGROUND: Cancer patients who receive care from specialist palliative care services in the UK are younger than those who do not receive this care. This may be explained by age-related differences in attitudes to end-of-life care. OBJECTIVE: To determine the relationship between age and i) attitudes to death and preparation for death; and ii) knowledge about, and attitudes to, cancer and palliative care. DESIGN: Interviews with older people, using a novel questionnaire developed using nominal groups. Main comparisons were made between people aged 55-74 with those aged 75 years and over. SETTING: General practices in London. SUBJECTS: 129 people aged 55-74 and 127 people aged 75 years or over on the lists of general practitioners. METHODS: A cross-sectional survey to determine knowledge and experience of hospice care; preparation for end-of-life; and attitudes to end-of-life issues. RESULTS: Participants were knowledgeable about specialist palliative care and almost half had some indirect contact with a hospice. People aged >74 were less likely than younger participants to want their doctor to end their life in a terminal illness. Although they believed death was easier to face for older people, they did not believe that younger people deserved more consideration than older people when dying, or that they should have priority for hospice care. Education, social class, hospice knowledge and anxiety about death had little influence on overall attitudes. CONCLUSIONS: The relative under-utilization of hospice and specialist palliative care services by older people with cancer in the UK cannot be explained by their attitudes to end-of-life issues and palliative care.     

Attitudes towards end-of-life care in a geriatric hospital in Japan

Nursing and medical staff attitudes toward end-of-life care at a private, not-for-profit geriatric hospital in Japan were measured as part of a larger intervention study to develop a palliative care programme. The intervention consisted of focus groups, education with pre- and post-testing, and attitude/belief surveys. All the medical staff (n = 8) and 99% (n = 97) of the nursing staff participated. Nursing staff overwhelmingly agreed that a palliative care programme would improve end-of-life care (94.6%) and that nurses should be more involved in discussing treatment options with families (85.7%). Of the nursing staff, 88.7% did not agree that doctors currently spend enough time discussing care plans with patients/families. The main barriers to improving end-of-life care perceived by the nursing staff were the treatment-oriented attitude of the doctors and their limited communication skills. The main barriers perceived by doctors were the lack of alternatives to their medical approach and legal concerns. The findings suggest that improving doctor/nurse communication would facilitate the development of a palliative care programme at this hospital.     

Dementia deaths in hospice: a retrospective case note audit

Dementia is now recognized as a progressive terminal illness and it is established that people with dementia have significant palliative care needs as they approach the end of life. However, population prevalence studies suggest that very few people with dementia access hospice services in the UK. The literature further suggests that hospice staff may be inadequately prepared to care for people with dementia. A retrospective internal case note audit covering a 3-month period of referrals was undertaken in one hospice in the south of England as part of work to establish staff education requirements arising from patient make-up. Only patients over the age of 65 were included. Of the 288 case notes audited, 9% of the patients had either been diagnosed with dementia or suffered with dementia as a comorbidity. The results of the audit suggest that the number of people with dementia referred to hospice services may have increased in the last decade. This is in keeping with expectations and future predictions resulting from increased disease surveillance and an increasingly ageing population.