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PO5. Palliative care approaches

Detailed programme, abstracts and poster presentations

PO5.1. Effects of advance care planning and use of technology at the end of life for persons with dementia and their caregivers: Trial design

AZIZI Bahar1, TILBURGS Bram2, SMALING Hanneke3, LAURE Tajda3, ACHTERBERG Wilco3, VAN DER STEEN Jenny4

1LUMC, Leiden, Netherlands, 2Department of Public Health and Primary Care, Leiden UMC, Leiden, Netherlands | Department of IQ-Healthcare Care, Radboud UMC, Nijmegen, Netherlands, 3Department of Public Health and Primary Care, Leiden UMC, Leiden, Netherlands, 4Department of Public Health and Primary Care, Leiden UMC, Leiden, Netherlands | Department of Primary and Community Care, Radboud UMC, Nijmegen, Netherlands

Introduction: In primary care practice, preferences for future care are often not discussed with persons with dementia. There is no evidence-based standard on advance care planning with dementia. Therefore, we will examine effects of two different advance care planning interventions. Intervention 1 will focus on establishing actionable medical advance treatment orders. Intervention 2 will focus on setting of global care goals and promote acceptance of an uncertain future and coping with the disease. In addition, as verbally expressing discomfort is often impossible in late-stage dementia, we will also examine planning of and applying distress-monitoring technology use.

Methods: In a three-armed cluster-randomized controlled trial, we aim to enrol 45 general practitioners and 279 dyads of persons with dementia and their family caregivers. The main outcome for the persons with dementia is quality of life. Decisional conflict experienced by family caregivers will be the key secondary outcome. Other outcomes include caregivers’ self-efficacy to interact with the physician and communication with the physician. We powered to detect differential effects of advance care planning for those who are more ready to engage in either intervention. The effects of technology use for persons with dementia will be evaluated through in-depth description of cases.

Results: Not yet available.

Conclusion: We expect that the study will contribute to more personalized advance care planning interventions.

PO5.2. Research in dementia palliative care: “What evidence exists to support the components of a Model for Dementia Palliative Care?”

FOX Siobhan1, O'CONNOR Niamh1, DRENNAN Jonathan2, GUERIN Suzanne3, KERNOHAN George4, MURPHY Aileen5, TIMMONS Suzanne1

1Centre for Gerontology and Rehabilitation, University College Cork, Cork, Ireland, 2School of Nursing, Midwifery and Health Systems, University College Cork., Cork, Ireland, 3School of Psychology, University College Dublin, Dublin, Ireland, 4Institute of Nursing and Health Research, Newtownabbey, Ireland, 5Department of Economics, University College Cork, Cork, Ireland

Background: Palliative care is recognised as an international priority in dementia care, although few people with dementia experience optimal palliative care. To address this, several European agencies have called for research to explore “effective models” of dementia palliative care. The Model for Dementia Palliative Care project will develop an acceptable, evidence- and practice-based model for palliative care for people with dementia in the community. One study aim was to identify core components of effective models of dementia palliative care in the community.

Methods:A scoping literature review following Arskey and O’Malley’s (2005) framework was conducted. A search strategy was devised to identify all peer-reviewed research papers relating to our aim. Databases searched were: PubMed, Embase, Cinahl, PsychInfo, and Scopus. Inclusion criteria were: non-pharmacological palliative care interventions; for people with moderate to advanced dementia, of any type; who were living in the community.

Results:Limited empirical research supporting components of dementia palliative care models in the community exists.Most of the available research evidence focuses on advance care planning, and palliative care for advanced disease.However, overall the core areas of an effective palliative care model for people with dementia in the community may be: advanced care planning, adoption of a palliative care approach, education about the disease process, 24-hour home support, improved care co-ordination, and support for the carer. Complex ethical issues are identified as one barrier to conducting good quality research in this area.

Conclusion:Although a supportive palliative care framework applies from soon after diagnosis, the empirical literature largely equates “palliative care” with “end-of-life care”. We must steer away from this approach and consider dementia palliative care as a holistic care approach which acknowledges person-centred care frameworks and the four pillars of palliative care. Barriers to conducting good quality research must be overcome as additional evidence is essential.

PO5.3. Evidence-based counselling for neurocognitive disorder advance care planning

LO Chih-Yu1, LIN Chih-Yuan1, LO Chih-Yu2, LIN Yi-Di3, HSIEH Hui-Ting3, SU Yu-An4, LAI Yi-chen4, KUO Jen-Hwa5, HUANG Chien-Jung6, YEH Yuh-Hsiang7, LIN Chih-Yuan8

1Taipei City Hospital, Taipei, Taiwan, Province Of China, 2Holistic Social Preventive and Mental Health Center, Taipei City Hospital, Taipei, Taiwan, Province Of China, 3Department of Family Medicine, Taipei City Hospital, Taipei, Taiwan, Province Of China, 4Department of Social Work, Taipei City Hospital, Taipei, Taiwan, Province Of China, 5Department of Long Term Care, Taipei City Hospital, Taipei, Taiwan, Province Of China, 6Department of Metabolism and Endocrinology, Taipei City Hospital, Taipei, Taiwan, Province Of China, 7Department of Chinese Medicine, Taipei City Hospita, Taipei, Taiwan, Province Of China, 8Department of Neurology, Taipei City Hospital, Taipei, Taiwan, Province Of China

Background: Critical resuscitation illness frequently as a common pathway of neurocognitive disorder. Taiwan Department of Health and Welfare launched Patient Autonomy Act in 2019 for neurocognitive disorder people and family by advance care planning counseling to avoid low-value care and prevent suffering. As a neurocognitive care team, evidence from real-world post-resuscitation scenarios for shared decision making is still lacking. This study aims to compare the palliative care services group with usual care group their clinical scenario and realized life-sustained treatments utilization.

Methods: We conducted a retrospective cohort study included all people with critical resuscitation from emergency department visit from Taiwan National Health Insurance Research Database during 2009 to 2013 as study population. We selected people who received palliative care services as palliative care group (n = 336) and assembled a usual care group (n = 1,344) through 1:4 matching for age, gender, comorbidity, event year confounding factors. Multivariate logistic regression and survival analyses to evaluate the days of survival, medical utilization and life-sustaining treatments use.

Results: Palliative care group significantly lower cardiopulmonary resuscitation, hemolysis, ventilator life-sustaining treatments usage, and shorter survival post-resuscitation days. Nasogastric tube feeding still prevalent in both groups.

Conclusions: Palliative care services could lower the life-sustaining low-value care and shorten suffering post critical resuscitation illness. Besides, along with the course of neurocognitive disorder, research is still lacking in regards to the issue of comfortable oral feeding.

PO5.4. Recognising the needs of older, frail, spousal carers

HARRISON DENING Karen

Dementia UK, London, United Kingdom

Relationship-centred care recognises the importance of the interpersonal and intrapersonal relationships that exist between the person and others around them and forms the context within which caring occurs.  The interconnectedness of the physical, spiritual, social and emotional aspects of well-being and illness underpins care provision for the person with dementia.  Whilst there has been much research on the psychosocial needs of family carers, little attention has been paid to the presence (or risk) of frailty in older spousal carers. Similarly, definitions of physical illness and multiple illness tend to presuppose that one disease is assuming a central place. Comorbid conditions in people with dementia are likely to be those that are common in older spousal carers, such as coronary heart disease, diabetes, hypertension, chronic obstructive pulmonary disease, heart failure, depression, arthritis and cancer. Frailty is linked to, but not the same as, ageing and in people aged over 85, a quarter to a half are estimated to be frail.  Such age-related decline leaves older people vulnerable to minor stressor events or sudden changes to health status such as an infection, minor surgery or a new drug therapy. It also puts them at increased risk of falls, disability, long-term care and death. This added into this equation also being a carer of a spouse with dementia can create a highly vulnerable situation.  This poster will consider case management in supporting the older spousal carer.

PO5.5. Living and dying well: Identification and co-ordination approaches for people living in care homes

PROVAN Hilary

NHS Tayside, Dundee, United Kingdom

The Scottish Government's Strategic Framework for Action on Palliative and End of Life Care states that everyone who needs palliative care will have access to it by 2021.

In support of this the Scottish Goverment has developed 10 commitments with Commitment 1 of the Strategic Framework for action on Palliative and End of Life Care to focus and improve the earlier identification of and co-ordination of care for those who have palliative care needs.

Dundee is also focussing on Comittment 6 and 7 of the 3rd Dementia Strategy 2017-2020 where delivery of care co-ordination is supported by Alzheimer Scotland's Advanced Dementia Practice Model so that care and support given to people with advanced dementia and also at the end of life with dementia experience an integrated and comprehensive approach to providing care. The 8 pillars Model of Community Support introduces an advanced dementia specialist team for optimum care.

The aim of this project is to improve the quality of care for people in a care home through:

  • Focus on a person centred and flexible approach
  • Timely and skilled co-ordination of End of Life and Palliative Care
  • Best support: Advanced Dementia Practice Model and End of Life Care
  • Focus on carers and family
  • Working together to achieve outcomes that matter to the individual.

While this work relates to the Living Well in Communities and Focus on Dementia groups, it is also relevant to other groups such as people with frailty and those living with multiple long term conditions. It is also hoped that the project will also impact on unplanned admissions to hospital, reducing delayed discharges and also highlighting the importance of conversations regards wishes and preferences for care.

 

 

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Last Updated: Thursday 07 November 2019

 

 
  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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