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14 Managing uncertainty in care for people with dementia at the end of life: the use of heuristics
  1. Nathan Davies1,
  2. Kethakie Lamahewa1,
  3. Rammya Mathew1,
  4. Jane Wilcock1,
  5. Jill Manthorpe2,
  6. Elizabeth L Sampson3,4 and
  7. Steve Iliffe1
  1. 1Research Department of Primary Care and Population Health, University College London, Rowland Hill Street, London, UK
  2. 2Social Care Workforce Research unit, Kings College London, The Strand, London, UK
  3. 3Division of Psychiatry, Marie Curie Palliative Care Research Department, University College London, 6th Floor, Wing B, Maple House, 149 Tottenham Court Road, London, UK
  4. 4Barnet Enfield and Haringey Mental Health Trust Liaison Team, North Middlesex University Hospital, Sterling Way, London, UK


Introduction The end of life for someone with dementia can present several challenges for practitioners. Challenges may be eased with the use of heuristics (rules-of-thumb). For example, FAST is used in stroke: Facial-weakness, Arm-weakness, Slurred-speech, Time to call 999. Our study developed a toolkit of heuristics to aid practitioners making difficult decisions when caring for someone with dementia at the end of life.

Methods A co-design approach with three phases:

1. Focus groups and semi-structured interviews with family carers and practitioners, to identify key decisions and how these should be made.

Results were presented to a co-design group consisting of health and care practitioners, and family carers tasked with developing a toolkit of heuristics, through workshops.

2. Testing the heuristics in practice for six-months in five clinical and care settings.

3. Evaluation of heuristics through interviews and questionnaires at three and six-months.

Results Four sets of heuristics were developed, covering; eating/swallowing difficulties, agitation/restlessness, reviewing treatment, and routine care. The heuristics are arranged as flowcharts. Eating/swallowing difficulties have two rules; ensuring eating/swallowing difficulties do not come as a surprise and reflection about ‘comfort-feeding’ only. Agitation/restlessness encourages a holistic approach, considering the environment, physical causes, and caregivers’ health/wellbeing. Reviewing treatment/interventions prompts practitioners to consider the benefits to quality-of-life and comfort. Finally, routine care, such as bathing, prompts practitioners to ensure care interventions improve or do not harm quality-of-life.

Conclusions Practitioners liked the simplicity of the heuristics, making their implicit knowledge explicit, enhancing their confidence in making decisions at the end of life.

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