title: A co-design process developing heuristics for practitioners providing end of life care for people with dementia.
abstract: BACKGROUND
  The end of life for someone with dementia can present many challenges for practitioners; such as, providing care if there are swallowing difficulties. This study aimed to develop a toolkit of heuristics (rules-of-thumb) to aid practitioners making end-of-life care decisions for people with dementia.
  
  
  METHODS
  An iterative co-design approach was adopted using a literature review and qualitative methods, including; 1) qualitative interviews and focus groups with family carers and 2) focus groups with health and care professionals. Family carers were recruited from a national charity, purposively sampling those with experience of end-of-life care for a person with dementia. Health and care professionals were purposively sampled to include a broad range of expertise including; general practitioners, palliative care specialists, and geriatricians. A co-design group was established consisting of health and social care experts and family carers, to synthesise the findings from the qualitative work and produce a toolkit of heuristics to be tested in practice.
  
  
  RESULTS
  Four broad areas were identified as requiring complex decisions at the end of life; 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 rules arranged into flowcharts. Eating/swallowing difficulties have three rules; ensuring eating/swallowing difficulties do not come as a surprise, considering if the situation is an emergency, and considering 'comfort feeding' only versus time-trialled artificial feeding. Agitation/restlessness encourages a holistic approach, considering the environment, physical causes, and the carer's wellbeing. Ending life-sustaining treatment supports practitioners through a process of considering the benefits of treatment versus quality-of-life and comfort. Finally, a heuristic on providing routine care such as bathing, prompts practitioners to consider adapting the delivery of care, in order to promote comfort and dignity at the end of life.
  
  
  CONCLUSIONS
  The heuristics are easy to use and remember, offering a novel approach to decision making for dementia end-of-life care. They have the potential to be used alongside existing end-of-life care recommendations, adding more readily available practical assistance. This is the first study to synthesise experience and existing evidence into easy-to-use heuristics for dementia end-of-life care.
authors.affiliation: Research Department of Primary Care & Population Health, University College London, Royal Free Campus, Rowland Hill Street, London, NW3 2PF, UK. Nathan.davies.10@ucl.ac.uk.
authors.forename: Nathan
authors.identifier: http://orcid.org/0000-0001-7757-5353
authors.initials: N
authors.lastname: Davies
authors.affiliation: Research Department of Primary Care & Population Health, University College London, Royal Free Campus, Rowland Hill Street, London, NW3 2PF, UK.
authors.forename: Rammya
authors.initials: R
authors.lastname: Mathew
authors.affiliation: Research Department of Primary Care & Population Health, University College London, Royal Free Campus, Rowland Hill Street, London, NW3 2PF, UK.
authors.forename: Jane
authors.initials: J
authors.lastname: Wilcock
authors.affiliation: Social Care Workforce Research Unit, King's College London, London, WC2B 6NR, UK.
authors.forename: Jill
authors.initials: J
authors.lastname: Manthorpe
authors.affiliation: Division of Psychiatry, Marie Curie Palliative Care Research Department, University College London, 6th Floor, Wing B, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.|Barnet Enfield and Haringey Mental Health Trust Liaison Team, North Middlesex University Hospital, Sterling Way, London, N18 1QX, UK.
authors.forename: Elizabeth L
authors.initials: EL
authors.lastname: Sampson
authors.affiliation: Research Department of Primary Care & Population Health, University College London, Royal Free Campus, Rowland Hill Street, London, NW3 2PF, UK.
authors.forename: Kethakie
authors.initials: K
authors.lastname: Lamahewa
authors.affiliation: Research Department of Primary Care & Population Health, University College London, Royal Free Campus, Rowland Hill Street, London, NW3 2PF, UK.
authors.forename: Steve
authors.initials: S
authors.lastname: Iliffe
mesh_terms: D032722:Advance Care Planning; D017028:Caregivers / Q000193:education*; D002648:Child; D000066491:Clinical Decision-Making / Q000379:methods*; D002985:Clinical Protocols; D003663:Decision Trees; D003704:Dementia / Q000523:psychology / Q000628:therapy*; D017144:Focus Groups; D000066506:Heuristics; D006801:Humans; D010166:Palliative Care / Q000379:methods* / Q000523:psychology / Q000639:trends; D017410:Practice Guidelines as Topic; D011788:Quality of Life; D013727:Terminal Care / Q000379:methods* / Q000639:trends; D006113:United Kingdom
keywords: Co-design; Dementia; End-of-life care; Palliative care; Qualitative research