1. Comorbidity and Dementia: improving health care for people with dementia (CoDem)
Dr Frances Bunn
Centre for Research in Primary & Community Care
University of Hertfordshire

2. Overview
Comorbidity and dementia: improving health care for people with dementia(CoDem)
Background and introduction to study
Preliminary findings

3. 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
Funded by Health Services and Delivery Research Programme

4. 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’
One study found that 61% of people with dementia had three or more comorbidities, 30% had vascular or heart disease (Doraiswamy et al 2002)
Dementia often viewed as an isolated condition with little understanding of how other complex health needs might impact on patient and carer experiences or service use and provision.

5. 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.

6. Aims of study CoDem Aims
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
What is best practice/effective care for service delivery for people with dementia and a comorbid condition?
How does the presence of comorbidities impact on access to health care and service delivery for a person with dementia, their carers and health and social care professionals?
What are the barriers and facilitators for service delivery for PWD and a comorbid condition?
How can current services adapt to meet the needs of PWD who have other complex health care needs?

7. 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
Our main focus is on three exemplar comorbid medical conditions, stroke, diabetes and visual impairment; all of which generally involve some form of external monitoring and require collaboration between primary and secondary care. Stroke and diabetes are chosen because they are common in older people and are thought to exacerbate or influence the progression of dementia. Moreover management of these conditions, in particular self-management, is likely to be complicated by the presence of dementia. Visual impairment is also prevalent in older people and may exacerbate confusion. In addition, the ability to cope with visual impairment is reduced if a person also has dementia

8. Research Plan 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
There are three phases to our research (talk through phases). We are currently undertaking phase 1 and I am going to be presenting some of the preliminary finding of our scoping review.
Research Plan

9. 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
Our study is informed by theories about continuity of care. Navigating the different systems of care is particularly difficult for this population, not least because they receive advice and support from health and social care and increasingly third sector providers. Processes of care may be further complicated for people with dementia and other comorbid health conditions.
Continuity of care is a complex, multi-dimensional, concept that is co-constructed arising from interactions between patients, carers and professionals. It may refer to relationships between patients and practitioners, coordination across services, information transfer and coordination of care over time, and the coherent delivery of services for people with long term conditions
* Freeman et al Continuity of Care: Report of a Scoping Exercise for the SDO programme of NHS R&D.

10. Scoping of literature Review aim Included studies that looked at:
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

11. Scoping of literature Included 54 studies 28 focus on prevalence
Other areas include quality of care, self-management, experiences & views
Type of comorbidity
Diabetes 23, VI 14, Stroke 9

12. Prevalence
Prevalence of 3 target conditions in people with dementia (from scoping review)
Diabetes 10%-26%
Stroke 3%-34%
Visual impairment 4%-29%
A number of studies looked at prevalence of the three target conditions in people with dementia. The percentage of people varied from study to study – this may be accounted for by variations in the populations in the study – for example some looked at people in hospital, some community based populations and some people in nursing homes

13. 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
Bayer et al 1994: Comorbid condition is neglected –professionals and carers have low expectations about the need for specialist diabetes care
Zhang et al 2010: Given less attention by professionals – less likely to use optometry services or diabetes health services
Doucet 2008: Suggests management of diabetes patients often inadequate and inadequate follow up of these patients
Sinclair 2000: Less likely to attend a diabetes clinic than those without dementia
Yarnall 2012: 23% never saw a health professional about their diabetes.
Guijarro 2010: less likely to have cataract surgery
Lopponen 2004: less likely to be diagnosed with glaucoma

14. Issues relating to continuity
Barriers to continuity
Carers feel excluded from decision making
Lack of joint working
Problems with self-management
Models of care focus on single condition
Poor communication between teams
Carers role & experience not recognised
Lack of understanding
& knowledge

15. 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 people with dementia with each comorbidity (and/or carer)
Currently recruited 13 people with diabetes, 5 VI, 2 stroke
Recruiting participants in the East of England and the North East

16. 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
Variation in care being received - Some see a regular GP and report positive experiences - the GP knows the patient and all their health conditions
Positive experiences of community nurses visiting some patients in their home
Diabetes - PWDs/carers often think of diabetes as a lesser condition compared with other health problems
There are some negative experiences of hospital stays due to poor transfer of info and lack of staff training E.g. staff were unaware of patient’s dementia. Didn’t know how to manage PWD
Carer managing condition – includes giving meds, taking bloods, blood pressure, adjusting meds (with and without discussion with HCP)
HCP – focuses on their specialist area and not taking into account memory
Social isolation – both PWD and carers often confined to home, PWD stops reading even if previously keen readers

17. 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)
Carer is responsible for coordinating healthcare and transferring information across different services

18. 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)
Also shows the HCP prioritising comorbidity over memory. The daughter had told the nurse (repeatedly) about her mother’s deteriorating memory. But the nurse visited the PWD at home and adjusted her meds and told the PWD about the change – ignoring the daughter’s concerns about memory problems. The PWD couldn’t remember what the nurse had told her.

19. 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

20. 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