S4.9 End-of-life care in people with dementia
Chair: Bettina Husebø
We all have to die. The best way for end-of-life care and treatment in people with dementias has been much debated by clinicians and researchers because these individuals are neither able to express suffering, nor able to report treatment and side effects after symptom management has been started. Advance care planning should be initiated early to include the patient in a decision-making process when she/he is still able to participate. This complex intervention including patients, relatives and health care professional is suggested to manage end-of-life care in dementia, but what such intervention should comprise exactly is unknown. Based on different research methods, this symposium will elucidate these challenges and include: a white paper for palliative care in people with dementia; necessity of proper methodology of tool development, and novel approaches e.g. “Rules of thumb” and the “SEED” programme. Together with the audience, we will discuss different approaches and how we can develop a standard to improve end-of-life care in these individuals.
S4.9.1 Palliative care in dementia based on the European Association for Palliative Care
(EAPC) white paper
Jenny T van der Steen1, Maartje S Klapwijk1, Nathan Davies2
1 Leiden University Medical Center, The Netherlands, 2 University College London, UK
Palliative care for people with dementia includes end-of-life care, but the end-of-life is difficult to predict and palliative needs often arise earlier. There are many possible complications and symptoms which may develop, including: infections, shortness of breath, swallowing difficulties and pain which the individual may not be able to clearly express, or expresses in different ways. Caring for someone with dementia is one of the most difficult caring roles, and support for family caregivers as part of a palliative approach is essential. In a white paper, the optimal approach to palliative care for people with dementia has been defined by the EAPC with eleven domains including, e.g.: Optimal treatment of symptoms and providing comfort, and Setting care goals and advance care planning. Not all people with dementia will require specialist palliative care. However, all involved in dementia care should be able to provide palliative care, employing care and treatment which aims to increase the comfort and quality of life of the individual and to support their family.
S4.9.2 Discarded in cancer patients but good enough for dying nursing home patients?
Bettina S. Husebø1, Elisabeth Flo1, Knut Engedal2
1 University of Bergen, Norway, 2 Norwegian National Advisory Unit on Ageing and Health, Oslo University Hospital, Norway
Background The Liverpool Care Pathway (LCP) is an interdisciplinary protocol, aiming to ensure that dying patients receive dignified and individualized treatment and care at the end-of-life. The method was withdrawn in the UK (2013) but is still used in nursing homes (NH) in different countries. We investigated whether LCP has been adapted and validated for use in people with dementia. Methods This systematic review is based on literature search of MEDLINE, CINAHL, EMBASE, and Web of Science. Results: The search identified 12 studies, but none describing an evidence-based adaption of LCP to people with dementia. No studies described the LCP implementation procedure, including strategies for discontinuation of medications, procedures for nutrition/hydration, or testing of such procedures in NHs. No effect studies addressing the assessment and treatment of pain and symptoms that include dying NH patients with dementia are available. Conclusion: LCP has not been adapted to NH patients with dementia. Validity and reliability in clinically settings are prerequisites. Advance care planning and disease-specific recommendations for people with dementia are required.
S4.9.3 An ethnographic study of professional caregivers’ experiences with the Liverpool
Care Pathway in nursing homes for people with dementia in the Netherlands
Natashe Lemos Dekker, Marjolein Gysels, Jenny T. van der Steen
Leiden University Medical Center, The Netherlands
Background The Liverpool Care Pathway (LCP) continues to be used in the Netherlands (NL) despite critiques in UK. Fhere are few observations of professional caregivers’ experiences with the LCP in nursing home (NH) care for people with dementia. Methods This presentation draws on four months of ethnographic fieldwork (2015) in 11 psychogeriatric NH units in NL. 25 semi-structured, audio-recorded interviews with elderly care physicians and nursing staff were conducted. Results Informants experienced the LCP as too complicated and as duplication of work. LCP did not cover the complexity of dementia care needs, which calls its contribution into question. However, LCP was appreciated as a communication tool and reminder of care goals, contributing confidence in staff. Conclusions The benefits of LCP as reminder and communication tool need continuous consideration related to the amount of work it requires as a bureaucratic obligation to secure palliative care. Currently, LCP does not match the context of dementia care in the NH.
S4.9.4 The SEED programme
Louise Robinson, Claire Bamford, Marie Poole, Catherine Exley
Newcastle University, UK
Background In the UK, dementia is the commonest cause of death in older women but over third of people with dementia die in hospital. Aim To support professionals to deliver better quality end-of-life care to people with dementia in the community. Methods We used a range of methods (interviews, focus groups, observation) to explore the delivery of end-of-life care from the perspectives of people with dementia, family carers, frontline staff and service managers. Results Through an integrative analysis of our extensive dataset, we identified eight key issues which influence the delivery of end-of-life care in dementia. Issues span the entire illness trajectory from key planning discussions soon after diagnosis to continuing care after death. Data was next used to develop an evidence-based intervention grounded in the eight key issues and delivered by a dementia care nurse facilitator, based in primary care but linking with existing services; the nurse is responsible for providing training and resources to other professionals. Conclusion Our intervention is currently being implemented; we will present early findings from the pilot trial and discuss in detail the challenges of such undertaking such research.
S4.9.5 Implementing a heuristic-based end-of-life care intervention into practice
Elizabeth Sampson, Nathan Davies, Rammya Matthew, Kethakie Lamahewa, Steve Iliffe, Jill Manthorpe
University College, London
Background Providing optimal palliative care in dementia can be challenging. Interventions need to take account of, and be adaptable to, differing contexts. Successful implementation requires use of theory and engagement with end-users. Methods We developed a toolkit of heuristics (rules-of-thumb) to aid practitioners using an iterative co-design approach; literature review, qualitative interviews and focus groups with family carers and practitioners (expertise including; general practitioners, palliative care specialists, geriatricians). A co-design group of practitioners and family carers synthesised findings and produced a toolkit of heuristics. Results Four broad areas required complex decisions; 1) eating/swallowing difficulties, 2) agitation/restlessness, 3) ending life-sustaining treatment, and 4) providing "routine care" at the end-of-life. Each topic became a heuristic consisting of a flowchart or decision tree. Field-testing showed heuristics were easy to use and remember, offering a novel approach to decision making for dementia end-of-life care. Conclusions Evaluation showed a key mechanism was how they made staffs' "implicit knowledge explicit". This is the first study to synthesise experience and existing evidence into easy-to-use heuristics for dementia end-of-life care. We will discuss how implementation theory can ensure end-of-life care interventions in practice.