End of Life Care in Dementia: How
Family Carers Understand Quality of
Care?
Nathan Davies
Primary supervisor: Prof. Steve Iliffe
Secondary supervisor: Dr Greta Rait
PhD upgrade 26.04.13
Overview
• Background
– Definitions
– Quality
– Dementia
– Family Carers
• Overview of Methodology
• Early results/ideas
• What’s next?
Palliative care
Palliative care is an approach that improves the
quality of life of patients and their families facing the
problems associated with life-threatening illness,
through the prevention and relief of suffering by
means of early identification and impeccable
assessment and treatment of pain and other
problems, physical, psychosocial and spiritual.
(WHO,2002)
End of life care
• Many different defintions:
– Extended period of 1 – 2 years (Radbruch & Payne,
2009)
– Synonymous with palliative care (Radbruch & Payne,
2009)
– 12 months (DOH, 2008)
– Last few days
What is quality?
• WHO base Quality of care (QOC) on 6 concepts:
– Effective
– Efficient
– Accessible
– Acceptable/patient centred
– Equitable
– Safe
Donabedian’s model of QOC
Structure
Outcome
Process
How do we measure quality of care?
• Different for EOLC – the patient will die
– Quality indicators
– Questionnaires/tools/instruments measuring:
• Process
• Structure
• Outcome
– Family reports
How common is dementia?
• Ageing population - 2 billion worldwide by 2050
(UNFPA, 2012)
• 800,000 have dementia in the UK expected to be
over 1 million by 2025 (Alzheimer’s Society, 2007)
• over 115 million worldwide by 2050 (Alzheimer’s
Disease International, 2009)
• Median survival after diagnosis 6.7 years (60-69)
and 1.9 years (90+) (Rait et al., 2010)
Dementia symptoms at the end of life
– Severe communication
impairment
– Aspiration
– Dyspnea
– Incontinence
– Infections (immune system
failure)
– Risk of falls/immobility
– Difficulties in swallowing
Palliative approach or aggressive treatments
• Aggressive treatments:
– Antibiotics – when patient is already suffering and they
will do little to relieve suffering
– Tube feeding – PEG/NG feeding
tubes
• Argued that these should not be used in end of life
care with dementia
Pain in dementia
• Dementia does not itself cause pain but
associated complications and comorbidities do.
• Pain is undertreated in people with dementia:
– Differences in dementia and non-dementia patient
receipt of pain management (Morrison et al., 2000;
Schreder et al., 2005)
• IMPACT showed some professionals did not think
people with dementia experience pain (Davies et
al. 2012)
Prognostication
Death trajectory typical in cancer
Prognostication
Death trajectory typical in chronic conditions (including
dementia)
Why are family carers important?
• 670,000 in the UK
• Many taxonomies of quality devised by
professionals
• Experts through experience
– Wishes of patients
– Accurate predictions
• Cant speak to patients at the EOL
Family carers
• Review of palliative care services and experience
of family and professional carers (Raymond et al.
2012)
– Wishes and rights
– Medical management and symptom control
– Place of care
– Food and drink
– Grief
Research question
What are the features of good
quality end-of-life care for
people with dementia from the
perspective of family
caregivers?
Objectives
• Explore the experiences and perspectives of family carers
who are caring for someone with dementia.
• Understand what family carers expect of end-of-life care
for their relative with dementia.
• Understand what family carers judge to be good quality
end-of life-care for their relative with dementia.
• Develop an understanding of the current state of the art of
end-of-life care for people with dementia within the UK.
Systematic review
• Search completed
– 403 articles found 325 after duplicates
– 213 excluded reading titles and abstracts
– 112 full texts to read
• Mixture of studies predominantly
– Qualitative
– North American
Method
• Qualitative methodology
• In-depth interviews
• 3 groups
– Carers of people recently diagnosed with dementia
– Carers of people currently caring for someone dying
with dementia
– Bereaved carers
• Analysed using Thematic Framework Analysis
Sampling
• Recruited from Uniting Carers, Dementia UK
• Purposive sampling
• Unable to recruit recently diagnosed to gain
expectations:
– Lack of responses
– 2 interviews completed – very difficult
• Sampling bias of carers (Van der Steen et al.,
2012)
Interviews
• Where am I?
– Interviewing complete 46 Interviews (47 participants)
• 4 phone interviews remainder face-face
• Characteristics
– 31 bereaved, 15 currently caring
– Bereaved sample range in time from death 3 months –
10years
– 29 adult children, 17 spouses, 1 close friend
Where are they from?
Manchester
Liverpool
London
Middlesbrough
Cambridge
Dover
Bristol
Dorset
Experience of interviews
• Different approach for current compared to
bereaved carers
• Interviewer judgement
• Interviewers characteristics
• Lasting between 25min and 2 hours
• Participants find them therapeutic
Difficulties interviewing
• Patient and family presence
• Participants become emotional
• Rambling – life stories
• Recording – noisy environments
Results
• Early emerging themes:
– Dignity of person with dementia
– Personalisation of care
– Communication from professionals
– Place of care
– Battles with professionals/care homes
– Care for the carers
Compassion
“I asked them [hospital staff] not to put him next to
the electrical box, but they ignored this, and put him
there anyway. He thought the coloured tags
attached to his cannula were the keys to open the
electrical box so he pulled out his cannula, making
his arm bleed copiously. There was blood all over
the pillow, but the nurse just turned the pillow over.
The nurse said that “my father was nothing but a
problem”” (Daughter)
Fear
“An auxiliary nurse came back in and told him to ‘sit
the f*** down’. I saw this when I was there, which
made me only wonder what happened when I wasn’t
there. No matter what anyone says you cannot say
anything to the nurses because you are leaving your
loved one at their mercy” (Daughter)
After death care
• “[…] watched them [undertakers] carrying her
down the stairs, you know in sort of a black body
bag and that was, that was horrible. I felt really, as
if at that point we maybe shouldn't have been
there, we maybe should have been sat in the
lounge […] I mean because she was vertical at
one point, because they were negotiating bends in
the stairs […] we could have been alleviated from
that” (Daughter)
Thesis outline
• Ch. 1. Quality of End of Life Care
• Ch. 2. Quality of Dementia End of Life Care
• Ch. 3. Systematic Review
• Ch. 4. Study Rationale
• Ch. 5. Methodology
• Ch. 6. Results
• Ch. 7. Discussion
Published
– A synthesis of the literature reporting the views and experiences of
professionals and family carers
– Evaluating educational initiatives to improve palliative care for people with
dementia: A narrative review
Under review
– Palliative and end of life care for people with dementia – lessons for
clinical commissioners.
– Modelling the landscape of palliative care for people with dementia: a
European mixed methods study.
Almost ready to submit
– Barriers to the Provision of High Quality Palliative Care for People with
Dementia in England.
– Quality Palliative Care across Europe for Cancer and Dementia:
International Challenges.
Acknowledgments
• My supervisors Prof. Steve Iliffe and Dr Greta Rait
• Family and friends for their support
• Dementia UK for helping with recruitment
• All the carers which have taken part
• European commission for funding
• All the IMPACT team
Funding source: This research has received funding from the [European Union's] [European Atomic Energy Community's] Seventh Framework Programme ([FP7/2007-2013]
[FP7/2007-2011]) under grant agreement n°[258883]. Disclaimer: The views expressed here are those of the authors and not of the European Commission.