Dying and Dementia: Staff, Family and Multidisciplinary Team Concerns

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 Itas
• 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 Itas
  involuntary and transferred to long-stay
• Diagnosis of metastases, increasing agitation ?
  Pain. Family unhappy with Itas
• DO WE TRANSFER?

6
3 G angst

• G 59 years, dx dementia after a long haul in St
  Jamess 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 Itas
• Never settled, ? In pain
• Full investigations
• HOW DID WE MANAGE?

8
5 J suicidal

• James 68 year old man with advanced Parkinsons
  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
  14 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