Skip to main content

Table 2 Selection of research priorities set through the James Lind Alliance and revised for Ireland by All Ireland Institute of Hospice and Palliative Care (2015)

From: Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research

Priority research questions identified by James Lind Alliance and All Ireland Institute of Hospice and Palliative Care (2015)
 How can access to palliative care services be improved for everyone regardless of where they are in the UK? James Lind Alliance #2
 What are the benefits of Advance Care Planning and other approaches to listening to and incorporating patients’ preferences? Who should implement this and when? James Lind Alliance #3
 What are the best ways to begin and deliver palliative care for patients with non-cancer diseases (such as COPD, heart failure, MND, AIDS, multiple sclerosis, Crohn’s disease and stroke)? James Lind Alliance #6 / AIIHPC #9
 What are the best ways to assess and treat pain and discomfort in people at the end of life with communication and/or cognitive difficulties, perhaps due to motor neurone disease (MND), dementia, Parkinson’s disease, brain tumour (including glioblastoma) or head and neck cancer, for example? James Lind Alliance #10
Priority research questions identified in May 2016 workshop
 What are the limits and potential of proxy, i.e. family carers, decision making?
 How best to include people with dementia in research studies, to achieve useful and actionable outcomes?
 What is the economic benefit, if any, of care at home services for dementia, and other neurodegenerative disease?
 What are the factors that contribute to and build carer resilience in advanced dementia care?
 How can assessment and support through video technology be utilised?
 What are the most appropriate outcome measures to explore benefit (if any) of palliative care? These need to be validated in dementia, Parkinson’s disease, motor neuron disease, etc.
 What are the optimal methods to effect change in staff behaviours concerning palliative care for their patients with dementia?
 What is the optimal transferrable model of dementia palliative care?
 What is the incidence of, and how can we limit, chemical restraint through inappropriate antipsychotic prescribing in advanced dementia?
 What is the effect on quality of death and dying, of being transferred from an acute hospital to die at home?
 How can recognition of need be improved among primary care and other healthcare workers of palliative care needs in their patients with dementia, and other neurodegenerative disease?