Maggie Stobbart-Rowlands presentation at Open Forum Events' Dementia: Innovation conference.

1. Compassionate care for people
with dementia
End of Life care for people with
dementia
Maggie Stobbart-Rowlands
National GSF Centre
www.goldstandardsframework.org.uk
info@gsfcentre.co.uk

2. The National GSF Centre in
End of Life Care
The leading EOLC training centre
enabling generalist frontline staff
to deliver a ‘gold standard’ of care
for all people nearing
the end of life
“Every organisation involved in providing end of life
care will be expected to adopt a coordination
process , such as the GSF”
DH End of Life Care Strategy July 08
The right care, for the right people, in the
right place, at the right time… everytime

3. Current GSF Training Programmes
GSF Primary Care- 95% Foundation Level
GSF Care Homes - 2300 care homes trained
GSF Acute Hospitals – 40 acute hospitals
GSF Domiciliary care – 300 care workers
GSF Community Hospitals - 42 community hospitals
GSF Dementia Care- 60 candidates

4. Improving End of Life Care with GSF
Head Hands and Heart
HEAD
Evidenced-based
knowledge, clinical
competence
‘what you know’
HANDS
Systems minded
care coordination
‘what you do’
HEART
person-centred
compassionate care
‘the way you do it’

5. Decreased hospital admissions and deaths
with GSFCH Training programme
as measured by ADA phases 4-6
Halving hospital deaths
Potential Cost Savings – estimated £30-40k/ care home/ year
- £1-2 m / PCT area

6. The National Dementia Strategy
• Focus on
– Diagnosis rates
– Dementia Friendly Communities
– Dementia Friendly Hospitals
– Research
• Missed opportunity of also focusing on good
end of life care for people with dementia.

7. Your understanding of Dementia
• In general is it widely understood that
dementia is a terminal illness?
• Is it widely accepted that a person with
dementia is an appropriate referral for
palliative care?
• How comfortable are you in caring for
someone with dementia in the final stages?

8. Prevalence 1
• Dementia affects ~ 5% people > 65 years
– Rises to 20% aged over 80 years
– 36% live in a Care Home
• ~820,000 people in the UK have dementia
– Likely to double in the next 20 years
– Current cost £17 billion
• More than cancer, stroke or heart disease
• ‘A global health and social care crisis’

9. Prevalence 2
• Only 1/3rd people with dementia have any specialist
healthcare assessment or diagnosis
– Lack of identification by GP
– Stigma
• When they do it is often:
– Late in the progression of the illness
– In crisis
– Too late to enable effective interventions
• National GP Contract ‘Quality and Outcome
Framework’ (QOF)
– New incentives for increased identification of dementia
and entry on registers

11. End of Life Care in Dementia –
what do we know?
Quality of dying?
NHS Complaints
Certification of death
The trajectory of dementia
Terminal illness?

12. Why does dementia matter in
end of life care?
• Increasing ageing population = higher risk
of dementia
• Age is also a big risk factor for most
cancers.
• By 2030 - 63,000,0000 people worldwide
will have dementia(2)
• By 2030 – 70% of all cancers will occur in
elderly people(1)

13. Why does dementia matter in end of life
care?
• ¼ of Acute hospital beds are occupied
by people with dementia
• 1/3rd of people in acute hospital beds
are in the last year of life
• On average ¾ of care home residents
have some degree of cognitive
impairment

14. 70% of UK adults said they would be scared of
moving into a care home in the future.
Reasons given:-
• 53% said the risk of their relative being abused
• 18% said risk of their relative losing their
independence
• 12% said lack of activities for their
relative/boredom
• 6% said that they would have less influence over
decisions about their care
• 2% said risk that the home would be closed
• 1% said another concern not listed
• 8% didn’t know.

15. Moving between homes
• 45% said this was because their care needs became too
high for the home to cope
• 22% said it was because the quality of care was poor
• 7% said it was because the home closed
• only 1% said the reason was the fees being too high
• a further 39% responded ‘other’
• 1% did not answer this question.
• nearly a third (32%) of respondents said the person with
dementia had to move care home

16. Danger of under diagnosis of cancer in
people with dementia.
• People with Alzheimers Disease have a 69%lower
chance of being treated for cancer. (4)
• A Dutch study with Elderly Care Physicians found
that advanced dementia was the leading cause of
non-referral of patients with suspected cancer. (5)
• GPs are more likely to discuss end of life care
arrangements for patients with cancer than with
other conditions such as dementia. (6)

17. Prognosis
• What is the cause of death in patients with
dementia?
– Death due to unrelated cause
– Death directly from Dementia
– Death as a result of interaction between
dementia and other disease

18. Age Bands 65 to 74 75 to 84 85+
Cancer
Number of deaths 33305 43330 20474
Number with dementia 977 3800 5951
% with dementia 2.90% 8.80% 29.10%
Circulatory
Number of deaths 31548 71469 67962
Number with dementia 941 6319 19992
% with dementia 3.00% 8.80% 29.40%
Respiratory
Number of deaths 9615 21019 18239
Number with dementia 1817 5224
% with dementia 2.90% 8.60% 28.60%

19. Advanced Dementia
• Clinical indicators that patients with dementia
are approaching the end stages of their disease
process:
– Unable to walk without assistance
– Urinary and faecal incontinence
– No consistently meaningful verbal communication
– Unable to dress without assistance
– Barthel score <3
– Reduced ability to perform activities of living
Gold Standards Framework (2008)

20. Advanced Dementia
• Plus any one of the following:
– 10% weight loss in previous 6 months without other
cause
– pyelonephritis or urinary tract infection, recurrent fevers
– serum albumin 25 g/l
– severe pressure ulcers
– reduced oral intake/weight loss,
– aspiration pneumonia

21. Advanced Dementia
• Common complications include1:
– Pneumonia (41%)
– Febrile episodes (53%)
– Eating problems (86%)
• All are predictors for high 6 month mortality
(~50%)
1. Mitchell S et al. NEJM 2009; 361 (16) 1529 – 1538.

24. Advance Planning

25. Thanks for looking after me in your magnificent
dementia care home .
PLEASE……….
Let me be outside in the fresh air as much as possible
Don’t check my blood, or take my blood pressure
Do give me beer, cake, crisps, butter
Put me in front of the DVD box set of England winning
the Ashes 2005 on repeat and in HD
Don’t put on any garage music, rap or Craig David
Don’t give me aspirin, anti-hypertensives, statins anti-
psychotics,
Do give me pain killers, opiates, antibiotics.
Don’t try and resuscitate me.
Thanks

26. Recall an episode of care that you were
involved in or witnessed with a person
with dementia
Consider:
Attitude
Behaviour
Compassion
Dialogue

27. 1. Did your or their actions value & honour that
person?
2. Did you/they recognise & acknowledge the
individual uniqueness of that person and
others involved?
3. Did you/they make a serious attempt to see
your/their actions from the perspective of
that person?

28. If you had dementia
What would you want for yourself?

29. GSF Dementia training programme
Key Aims
1) Improve person centred care & reduce carer stress
2) Improved assessment of symptoms including pain & distress
3) Improvement in Advance care planning & best interests
(MCA)
4) Increase in people dying in their usual place of residence by
reducing inappropriate hospital admissions and deaths

30. Sessions Key topic Comparative
Evaluation
Outcome
1. Identify
Right person
Awareness -
of impact, dignity, carers
Confidence
survey
Case studies
Greater knowledge
skills and confidence
2. Assess –
clinical
Right care
Pain management -
and symptom control
Questionnaire Greater knowledge
+skills in pain
assessment
3. Assess –
personal
Right care
Advance Care Planning-
needs and preferences
recorded
Case studies Increased numbers
offered ACP
4. Plan- care
Right place,
right time
Reduce hospitalisation -
the right to die in the
preferred place of residence
Supportive Care
Analysis
Case studies
Decreased
hospitalisation
↓crisis
↓hospital deaths
The GSF Dementia Training programme
(4 x 1 1/2 hr sessions – distance learning)

31. “ the course has changed
the whole ethos &
atmosphere of the home”
“The GSF
dementia training
has been very
educational and
interesting for
me. I hope that in
the future others
will have the
same opportunity
“
‘Brillian
t
course’
‘Very
educationa
l and
interesting’
What the
course did
for us
GSF End of Life care for
people with dementia
We have gained
knowledge and
confidence in the
correct use of pain
charts which we
use as evidence of
need to educate
the GPs as to the
need for good pain
relief.

32. • For further information
www.goldstandardsframework.org.uk
info@gsfcentre.co.uk

33. References
1. Yanuki, R. Ries, LA. Cancer in older persons: an international issue in an aging
world. Semin – Oncology. 31(2), 128-136. (2007)
2. Ferri, CP. Prince, M. Brayne, C et al. Global prevalence of dementia: a Delphi
consensus study. The Lancet 366 (9503). 2112 – 2117. (2005)
3. Solomons, L. Solomons, J. Gosney, M. Dementia and Cancer. Aging Health. 9
(3): 307 – 319.(2013).
4. Roe, CM. Behrens, MI, Xiong, C et al. Alzheimers Disease and Cancer.
Neurology. 74 (2) 106 – 112. (2010)
5. Hamaker, ME. Hamelink, VC et al. Non referral of nursing home patients with
suspected breast cancer. Journal of Advanced Medicine: Dir Assoc. 13 (5),
464 – 469. (2012)
6. Abarshi, E. Echfeld, M. Donker, G et al. Discussing end of life issues in the last
months of life: a nationwide study among GPs. Journal of Palliative Medicine.
14 (3), 323 – 330. (2011)
7. McCormick, WC. Kukull, WA, van Belle, G et al. Symptom patterns and
comorbidity in the early stages of Alzheimers Disease. Journal of American
Geriatric Society: 42 (5) 517 – 521. (1994)
8. Iritani, S. Toghi, M. Miyata, H. Ohi, G. Impact of dementia or cancer discovery
and pain. Psychogeriatric. 11 (1), 6 -13. (2011).