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Palliative and End of Life Care for patients with Dementia

Palliative and End of Life Care for patients with Dementia. Dr Katharine Thompson Consultant in Palliative Medicine February 2019. Background. Prevalence and Relevance. 1 /3 people >65yrs have dementia 2/3 are female Huge rise in numbers (1 million in UK by 2021). Definition.

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Palliative and End of Life Care for patients with Dementia

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  1. Palliative and End of Life Care for patients with Dementia Dr Katharine Thompson Consultant in Palliative Medicine February 2019

  2. Background

  3. Prevalence and Relevance • 1 /3 people >65yrs have dementia • 2/3 are female • Huge rise in numbers (1 million in UK by 2021)

  4. Definition • A syndrome due to disease of the brain • Chronic and progressive nature • Disturbance of multiple higher cortical functions • Memory, thinking, orientation, comprehension, language, judgement • Consciousness is not impaired • Impairment of cognitive function and associated decline in: • Emotional control • Social behaviour • Motivation

  5. Clinical Features of Dementia 3 Clusters: • Neuropsychological • Memory loss, executive function (reasoning/judgement) • Function (ADLs) • Washing, dressing, shopping, driving • Neuropsychiatric - Behavioural and psychological symptoms of dementia (BPSD) • Mood, agitation, hallucinations

  6. Indicators of Advancing Dementia • Unable to walk without assistance • Urinary and faecal incontinence • No consistently meaningful conversation • Unable to manage ADLs • Barthel score <3 Plus any of: • Weight loss • Urinary tract infection • Severe pressure sores, stage 3 or 4 • Recurrent fever • Reduced oral intake • Aspiration pneumonia Predictors of End Stage Dementia • 5-10% weight loss over 1-2 months • Admission to care home

  7. Challenges

  8. Unmet Need Symptom Burden may be similar to: • Cancer • Chronic obstructive pulmonary disease • Advanced heart failure Symptoms: • Anxiety • Agitation • Dysphagia Holistic Need: • Functional • Financial • Existential/Spiritual needs • Carer burden

  9. Barriers to Palliative Care Service • Potential number of service users • Location of care • Social care versus health care • Visibility to secondary care • Lack of prognostic markers • Culture Patient • Unable to articulate symptoms • Behavioural change often multi-factoria Disease • Challenging behavioural and psychological symptoms • Often co-morbidities • Survival is unpredictable • Death may be due to dementia or inter-current illness

  10. Palliation of Symptoms

  11. Symptom Management BPSD: • Depression • Anxiety • Sleep/Wake Cycle Reversal • Hallucinations/Delusions • Agitation Pain Distress

  12. Case Study

  13. Mrs D • 84 year old female • Dementia for several years • Long standing nursing home resident • Slow deterioration over months • Family felt NH unable to meet needs

  14. Recent History Symptoms: • Family felt patient had abdominal pain • Patient unable to articulate this verbally • Wincing, grimacing, drawing legs up intermittently • New agitation/aggression In context of: • Significant weight loss • Not eating • Sleeping more • Mainly bed bound

  15. What would you do? • Assessment • Investigations? • Management • Referral?

  16. Assessment • Patient unable to provide further history Obs: • Hypotensive • Afebrile Examination • Very frail, cachectic • Agitated, tense • Abdominal examination • Grimacing and shouting out • Distended bowel loops – faecal loading • Palpable bladder

  17. Diagnosis?

  18. Diagnosis • Hypotensive • Urinary retention • Constipation In context of rate of change described: • Approaching EOL

  19. Management?

  20. Management Reverse the reversible: • Catheterise • Bowel intervention • Rationalise meds • Anticipatory prescribing

  21. Outcome • Patient died peacefully in the Hospice over 1 week later....could have been in NH

  22. Questions

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