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6 Mapping the trajectory of the last 12 months of life of people with dementia: the role of specialist palliative care

Background Dementia is now one of the top five underlying causes of death. There are concerns about the quality of care and barriers to the provision of quality end of life care for people with dementia, meaning they may not have access to specialist palliative care (SPC) or adequate symptom control. Aim To map the last 12 months of life for people with dementia; the role of SPC Method Retrospective, mixed method study reviewing clinical records of decedent patients and narrative interviews of the carer/next of kin. Results Of 34 carers approached, 15 consented to being interviewed (44% response). 2 typical trajectories were identified: ‘A revolving door’ recurrent acute events and crises, with regular attendance at accident and emergency (A&E) and changes in care setting; and ‘gentle fading’, minimal health or social care intervention required). 13 patients had at least 1 visit to the A&E department (range 1–6) but recurrent attendance was common. There was limited evidence of ACP and DNACPR was predominantly completed in the final days of life. 12 of the patients were referred to SPC. Median time from referral to death was 10 days: input included non-complex end of life symptom control, ACP, education and support of care home staff and family support. Place of death was care home (5), hospital (6), hospice (2) and home (2). 7 died in their usual place of care. Conclusion SPC has a role in the last 12 months of life for people with dementia but late referral limits the efficacy of SPC intervention. Local initiatives are needed for health and social care to work together with SPC to look at optimising care for people with dementia earlier in the illness trajectory.