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BackgroundIn dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. AimTo evaluate the effectiveness of advance care planning with family carers in dementia care homes. DesignPaired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. Setting/participantsA total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. ResultsThe primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (−10.5, 95% confidence interval: −16.4 to −4.7; p < 0.001). ConclusionAdvance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers.

BackgroundIn dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. AimTo evaluate the effectiveness of advance care planning with family carers in dementia care homes. DesignPaired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. Setting/participantsA total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. ResultsThe primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (−10.5, 95% confidence interval: −16.4 to −4.7; p < 0.001). ConclusionAdvance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers.

Objectives To report on the feasibility and acceptability of an ACP model for individuals living with dementia in a sample of care homes in the United Kingdom. Method As part of a cluster randomised controlled trial including 25 Care Homes, carers of residents living with dementia in 13 of these homes were exposed to an ACP intervention. This comprised of five elements: an ACP facilitator; family education; a family meeting with a follow-up; documentation of ACP decisions; and, orientation for GPs and care home staff about the intervention. One feature of the evaluation included a detailed documentation on the delivery of the intervention, supplemented with stakeholder interviews to assess its feasibility and acceptability. The ACP Facilitator maintained both a narrative journal and a log of activities associated with tasks during the delivery of the intervention. A qualitative interview was held with the ACP Facilitator to discuss their perceptions of the implementation, challenges and benefits of the ACP model. Participating care home managers and family carers also completed a qualitative interview to determine whether they perceived such a model helped or hindered care. Results On average administration of the ACP intervention took two hours to complete on an individual family basis. Care home managers (five from each study arm) and family carers in combination with the findings from the ACP facilitator highlighted the acceptability of the intervention, the importance of such a role to be fulfilled within the care home environment was stressed, however time and staff restraints were noted as key barriers. Nonetheless, the interest and motivation of staff to make such a role possible was clear. Conclusions This presentation identifies the feasibility and perceived acceptability of an ACP intervention suitable for dementia residents in care homes in the UK.

Background: Palliative care day services provide a safe environment for people with palliative care needs, enabling them to access a range of services while acting as a respite services for family caregivers. Viewed as marginal services, they are often under resourced and under researched. The aim of this study was to understand how palliative day care services contribute to client care from the perspective of management and hospice multidisciplinary teams. Methods: A descriptive qualitative study, using six focus groups conducted with staff at three United Kingdom hospices in England, Scotland and Northern Ireland. Thirty-five participants were recruited, including management and staff. Discussions were transcribed and analysed thematically. Results: Four key themes emerged: (1) variations of care, beyond heterogeneity of patients; (2) unclear referrals and inconsistent patient population; (3) recognising strengths and challenges and (4) an uncertain future. A major focus of group discussions was the model of care and the benefits of the service, however the importance of demonstrating services’ effectiveness and value for money was highlighted. Conclusions: Management and hospice staff believed day-services to be a helpful introduction to palliative care, providing both social and medical support. Economic pressures and patient demand were influencing them to move from a social model to a hybrid model. Further research is needed to understand the effectiveness of the service.

In the UK, there are between 70,000 and 100,000 hospice volunteers, of whom half have direct patient contact. This seminar draws on a commissioned literature review that highlighted how ‘volunteering is integral to voluntary action and often motivated by altruism.’ The review concluded that hospice at home volunteers can help improve the quality of responsiveness of end of life care, improve access to care and can support care and death in the person’s own home. Volunteers gain health and social benefits and personal growth from their volunteering and the patients and carers they support also gain benefits over and above the care they receive. Volunteers also bring benefits to the hospice as an organisation and to the local community, providing a link between the two and enabling the hospice to be more sensitive and responsive to local needs. The seminar will highlight further work that would seek to provide empirical, qualitative data on the role of the volunteer in two community settings, England and Northern Ireland, and would aim to explore the differences and similarities in these two community contexts. For the purposes of this seminar the following definition of volunteering in end of life care is used: ‘volunteering in end of life care is unpaid activity conducted for the benefit of others beyond close relatives provided in connection to an organisation that provides end of life care, support or services.’ (Naylor et al. 2013, p.2).

In the UK, there are between 70,000 and 100,000 hospice volunteers, of whom half have direct patient contact. This seminar draws on a commissioned literature review that highlighted how ‘volunteering is integral to voluntary action and often motivated by altruism.’ The review concluded that hospice at home volunteers can help improve the quality of responsiveness of end of life care, improve access to care and can support care and death in the person’s own home. Volunteers gain health and social benefits and personal growth from their volunteering and the patients and carers they support also gain benefits over and above the care they receive. Volunteers also bring benefits to the hospice as an organisation and to the local community, providing a link between the two and enabling the hospice to be more sensitive and responsive to local needs. The seminar will highlight further work that would seek to provide empirical, qualitative data on the role of the volunteer in two community settings, England and Northern Ireland, and would aim to explore the differences and similarities in these two community contexts. For the purposes of this seminar the following definition of volunteering in end of life care is used: ‘volunteering in end of life care is unpaid activity conducted for the benefit of others beyond close relatives provided in connection to an organisation that provides end of life care, support or services.’ (Naylor et al. 2013, p.2).

Background: Palliative care day services provide a safe environment for people with palliative care needs, enabling them to access a range of services while acting as a respite services for family caregivers. Viewed as marginal services, they are often under resourced and under researched. The aim of this study was to understand how palliative day care services contribute to client care from the perspective of management and hospice multidisciplinary teams. Methods: A descriptive qualitative study, using six focus groups conducted with staff at three United Kingdom hospices in England, Scotland and Northern Ireland. Thirty-five participants were recruited, including management and staff. Discussions were transcribed and analysed thematically. Results: Four key themes emerged: (1) variations of care, beyond heterogeneity of patients; (2) unclear referrals and inconsistent patient population; (3) recognising strengths and challenges and (4) an uncertain future. A major focus of group discussions was the model of care and the benefits of the service, however the importance of demonstrating services’ effectiveness and value for money was highlighted. Conclusions: Management and hospice staff believed day-services to be a helpful introduction to palliative care, providing both social and medical support. Economic pressures and patient demand were influencing them to move from a social model to a hybrid model. Further research is needed to understand the effectiveness of the service.