Ann Regan presentation from Dementia: Quality of Care conference

1. Outcomes found during the early years of
the dementia outreach service
Ann
Regan
Dementia at the end of life

2.  Deterioration in condition in the last year;
 Initial assessment: Independently mobile, but
hesitant, clutching door frames and furniture, to
steady herself. Poor leaning posture forward at an
angle that must have put a strain on her back.
 Maintained a stable weight (BMI of 26) despite
often leaving food uneaten, even with supervision
 Resistant to personal care
 Non-compliant with medication  only taking
liquid medicines covertly with her food
80 years-old
Alzheimer’s/mixed dementia
PMH: Osteoporosis, Breast cancer, fractured wrist
Admitted to residential home 3 years before
 Behaviour changes: Hallucinations (images of children), frightened, anxious, tearful.
 Victoria, her family and staff distressed!
 Started mirtazapine 4 months earlier, previously on venlafaxine  not helpful!

3. interventions
 Gradual increase in analgesia
Paracetamol

Codeine + paracetamol

Buprenorphine 5 micrograms/hour patch
 Profiling bed
 Review by Psychiatrist and CPN:
Stopped mirtazapine.
One month later:
 Only occasionally resisted personal care;
 Little agitation, no hallucinations.

4. Some time later:
 Recurrence of resistance to care
 Distressed, muttering and
whimpering to herself
Regular paracetamol had
been stopped

Calmer mood restored
when regular paracetamol
prescribed again
Many months later:
 further deterioration occurred
 ? recurrence of breast cancer  daughter and GP felt would not be in her best
interests to investigate.
 No longer able to take oral medication  Transdermal analgesia was increased
 Two weeks later, she was calmer and willing to accept fluids/soft food from staff
 After a further week she died peacefully surrounded by her family
80 years-old
Alzheimer’s/mixed dementia
PMH: Osteoporosis, Breast cancer, fractured wrist
Admitted to residential home 3 years before

5.  care package to provide personal care
and company and to give regular short
walks
 assistive technology to monitor safety
 new incontinence of faeces causing
distress
 showing observable signs of back pain,
though rarely complaining of pain
83 years-old
Vascular dementia
PMH: osteoporosis, vertebral fractures, ischaemic
heart disease
Living alone with support from services, her
daughter and her son
 family worries about dietary and fluid intake
 some hallucinations leading to distress; ‘they’re here now, round the curtains’
 good ‘social front’ disguising cognitive difficulties on casual encounters
 Regular medications:
Paracetamol as required for pain relief; bisoprolol & furosemide

6. interventions
 faecal incontinence resolved after
constipation was found to be the underlying
problem and treated
 deterioration started with a fall – underlying
infection found to be the cause
 advanced care plan written with son and
daughter looking at June’s best interests
 chest infections and UTIs became frequent
 periods of distress - gradual increase in
analgesia up to 20 microgram/hour
buprenorphine transdermal patch with regular
review – oromorph to titrate dose
 small pressure ulcer developed – resolved
with treatment and upgrade in pressure
relieving mattress
Condition changing and new symptoms emerging as existing ones were resolved.
Frequent review needed to maintain comfort and provide support for family

7. dying phase
 sleeping more, reduced intake of diet and
fluids, swallowing difficulty increasing
 poor mobility- became bedbound
 care package was increased and CHC funding
secured
 oromorph not always settling distress,
diazepam, then promazine given with effect
 gentle facial massage found to relieve distress
 district nurses involved, anticipatory
prescribing & syringe driver available for when
needed
 family devoting more time ensuring 24 hour
supervision, night sits obtained where possible,
family paying for some of these
 relief from symptoms achieved
June died peacefully in her own bed with her family around her
Her son and daughter expressed satisfaction in knowing they had helped to fulfil
their mother’s wish to die at home

8. Vulnerability in advanced dementia
based on evidence gathered over the first 12 months of
the Willow Wood Dementia Service
Behaviour changes

9. Findings from the first 12
months of the Willow Wood
Dementia Service
1. McClean W& Cunningham C (2007)
Pain in Older People and People with
Dementia: a Practice Guide.
Dementia Services Development
Centre, University of Stirling.
2. Tapley M, Regan A and Jolley D
(2013) Hospice: putting the heart
back into dementia care. Journal of
Dementia Care; 21(5):14-15
3. Regan A, Tapley M and Jolley D
(2014) Dementia at the end of life:
what can hospices do? European
Journal of Palliative Care; 21(1)

10. Summary  People with advanced dementia form a
highly vulnerable group at high nutritional risk
and at high risk of pressure ulceration;
 They are highly dependent on others to
anticipate and support their additional needs
as dementia advances;
 Resistance to personal care and food refusal
are often part of advancing dementia, but can
be ameliorated by skilled dementia sensitive
communication, attention to symptom relief
and supportive measures;
 In order to improve end of life care for
people with dementia, we need to look
beyond the dementia for the reasons behind
any distress seen.

11. Sometimes fairly simple supportive measures can
make a big difference to quality of life.
Thank you