14 Managing uncertainty in care for people with dementia at the end of life: the use of heuristics

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IntroductionThe 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.MethodsA 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.ResultsFour 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.ConclusionsPractitioners 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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