Comorbidity and Dementia: improving health care for people
with dementia (CoDem)
Dr Frances Bunn
Centre for Research in Primary & Community Care
University of Hertfordshire
Overview
• Comorbidity and dementia: improving health
care for people with dementia(CoDem)
– Background and introduction to study
– Preliminary findings
Dementia and Comorbidity
• Funded by NIHR HS&DR Programme
• Led by University of Hertfordshire
• Collaborators: UCL, Cambridge University,
Newcastle University, South Essex Partnership
Trust
• September 2012-April 2015
Background
• Many people with dementia may have other
medical conditions
• Dementia often viewed as isolated condition
• Little is known about how services are
organised for this vulnerable group or
what constitutes
‘best care’
In a previous study reviewing qualitative literature on
patient and carer experiences we found 102 studies but
there was little evidence relating to the experiences of
people diagnosed with dementia who have an
accompanying health condition.
Aims of study
• CoDem
– One of first studies looking at health service
delivery for people with dementia & comorbidity
• Aims
– Explore impact of comorbidities for people with
dementia on access to non-dementia services
– Identify ways of improving integration of services
for this population, reducing fragmentation and
inappropriate use of care
Study focus
• Focus on 3 specific conditions: stroke, diabetes,
visual impairment.
• Chosen because:
– Generally involve some form of external monitoring
– Require collaboration between primary & secondary
care
– Common in older people
– Diabetes – self management may be complicated by
presence of dementia
– VI – may exacerbate confusion
Phase 1
• Review of international literature
• Analysis of population cohort database
Phase 2
• Interviews people with dementia/family carers
• Focus groups with clinicians involved in their care
Phase 3
• Highlight interventions to support continuity & equity
of access
• Stakeholder conference to develop and refine
guidance
Research Plan
Theoretical framework
• Study is informed by theories about continuity of
care*
• Continuity may refer to:
–
–
–
–
Relationships between patients and practitioners
Co-ordination across services & over time
Information transfer
Coherent delivery of services for people with long
term conditions
* Freeman et al 2000. Continuity of Care: Report of a Scoping Exercise for the SDO programme of NHS R&D.
Scoping of literature
• Review aim
– understand current knowledge on the range of
comorbid disease amongst people with dementia &
the impact of comorbidity on experiences and service
• Included studies that looked at:
–
–
–
–
Prevalence of comorbidities in people with dementia
Quality of care & access to services
Current systems and structures
Patient & carer experiences
Scoping of literature
• Included 54 studies
• 28 focus on prevalence
• Other areas include quality of care, selfmanagement, experiences & views
• Type of comorbidity
– Diabetes 23, VI 14, Stroke 9
Prevalence
• Prevalence of 3 target conditions in people
with dementia (from scoping review)
– Diabetes 10%-26%
– Stroke 3%-34%
– Visual impairment 4%-29%
Quality of care
• Found 9 studies comparing access to care in groups
with & without dementia
• 8/9 studies found some evidence that quality of care
or access to services was poorer for people with
dementia compared to those without dementia
– Less likely to receive monitoring for conditions such as
diabetes and visual impairment
– Reduced access to treatment such as intravenous
thrombolysis for stroke, surgery for cataracts
Issues relating to continuity
Carers feel
excluded
from
decision
making
Lack of
understanding
& knowledge
Carers role &
experience
not
recognised
Lack of
joint
working
Barriers to
continuity
Poor
communic
ation
between
teams
Models of
care focus on
single
condition
Problems
with selfmanagem
ent
Interviews – people with dementia and
family carers
• Objective: to understand how having
Dementia & comorbidities impacts on access
to health care and service delivery
• Aiming to recruit 10-15 people with dementia
with each comorbidity (and/or carer)
• Currently recruited 13 people with diabetes, 5
VI, 2 stroke
Interviews: Preliminary findings
• People with dementia & carers
– Variation in care
– Carer has significant role in managing condition,
medication, appointments etc.
– Some people reported negative experiences
around transfer of information, lack of awareness
amongst hospital staff
– HCP prioritise comorbidity over memory problems
– Social isolation
Communication of information
• Issues emerging about the
transfer/communication of information
‘So it seems that within the hospital setup they don’t
always transfer all relevant information between
departments’ (Carer)
it didn’t actually say on his notes that he had dementia,
which would have been quite useful.. it’s on his diabetic
notes but it obviously hadn’t gone through to the eye
screening bit’ (Carer talking about husband with dementia
attending eye screening apt)
Management of condition
• HCP prioritising comorbidity over dementia
– “Any changes to medication … mum wasn’t able to
cope with it and she couldn’t remember what the
nurses or the doctor had said and they didn’t
realise that she wasn’t remembering ….and.. they
weren’t consulting me at the time and so I, ..I was
concerned that, you know, I didn’t want to come
over one day and find her in a diabetic coma or
something.” (Daughter referring to mother with
dementia)
To conclude
• Preliminary findings suggest lack of continuity
of care, poorer access to services
• CoDem due to be completed in April 2015
• Study will add to our understanding of how
having dementia impacts on the management
of other health conditions.
• For more information contact
[email protected]
Funder
• This presentation presents independent research
commissioned by the UK National Institute for Health
Research (NIHR) under HS&DR (Grant Reference Number
11/1017/07). The views expressed in this paper are those
of the authors and not necessarily those of the NHS, the
NIHR or the Department of Health. The sponsor of the
study has no role in study design, data analysis, data
interpretation or writing of the report.
• Fore more information contact [email protected]
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Dr Frances Bunn, Senior Research Fellow in Evidence Based Practice