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Dying and Dementia: Staff, Family and Multidisciplinary Team Concerns

Dying and Dementia: Staff, Family and Multidisciplinary Team Concerns. Dr Mary Cosgrave. Case Vignettes. Dying from Dementia Dying with Dementia and something else

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Dying and Dementia: Staff, Family and Multidisciplinary Team Concerns

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  1. Dying and Dementia: Staff, Family and Multidisciplinary Team Concerns Dr Mary Cosgrave

  2. Case Vignettes • Dying from Dementia • Dying with Dementia and something else • Levels of Palliative care: Palliative Care Approach, General Palliative Care interfacing with good Dementia Care, Specialist Palliative Care • Concerns of Staff, Family and MDT • Communication and Education

  3. Specific Issues • Diagnosis • Advanced plans or what (s)he would want • Admission to Care • Depression, malaise • Investigations • First trip to Accident and Emergency • Infections • Feeding • End of Life

  4. 1 F do we investigate? • F, 70 years old, long term patient in the Community • Lived with wife, started respite in St Ita’s • Became long-stay, minimal BPSD but resistive: intolerant of procedures • Pale, Hb 9.0 g/dl • WHAT DO WE DO?

  5. 2 T: do we transfer? • T 68 years old, dementia and cancer • Extremely disturbed at home: would not go to bedroom to sleep and agitated • No support services: admitted St Ita’s involuntary and transferred to long-stay • Diagnosis of metastases, increasing agitation: ? Pain. Family unhappy with Ita’s • DO WE TRANSFER?

  6. 3 G: angst • G 59 years, dx dementia after a long haul in St James’s Memory Clinic • Unusual variant: insight preserved • Uneasy from Day 1 “Will I become an incontinent?” • Three admissions for depression • 2006, admitted with agitation • STOPPED EATING: WHAT DID WE DO?

  7. 4 D: late presentation • D 66 years; lived with husband • Three of her siblings presented with AD • Husband hid her from services, very agitated by time of admission to St Ita’s • Never settled, ? In pain • Full investigations • HOW DID WE MANAGE?

  8. 5 J: “suicidal” • James: 68 year old man with advanced Parkinson’s disease with dementia, aphonia and diagnosed depression • Admitted BH, very ill, resuccitated but poor recovery. • Rehabilitation poor, needed enteral feeding • Pulled out tubes, tried to harm himself • WHAT DID WE DO?

  9. 6 M: ongoing active investigation and intervention • M, 65 year old married woman with end-stage AD on 1:4 week respite • Husband did not take advice and had PEG inserted by gastro team • Frequent problems with infections, insisted on full resuccitation for all illnesses • BECAME ACUTELY ILL. WHAT DID WE DO?

  10. Management of Cases • All had advanced dementia • Palliative Care Approach: same outlined to families, explaining likely life-span and aim to ensure quality of remaining time • Medical Advice sought for confirmation of underlying illnesses • Palliative Care advice sought for all • Specialist Palliative Care Advice obtained for those with malignancy and intractable symptoms • Communication with Families: frequent and detailed was key strategy.

  11. Recap of issues • Understanding of dementia, course, prognosis, duration. • Changing expectations, targets with disease change • Changing treatment target as appropriate • Balance of over and under investigation • Realism of health environment

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