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: Symptoms: Anxiety
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 Catheterise Bowel intervention Rationalise meds
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