Comorbidity and Dementia: improving health care for people with dementia (CoDem)

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

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’

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 • 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

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

8. 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 * Freeman et al 2000. Continuity of Care: Report of a Scoping Exercise for the SDO programme of NHS R&D.

10. 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

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%

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

14. Issues relating to continuity 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 10-15 people with dementia with each comorbidity (and/or carer) • Currently recruited 13 people with diabetes, 5 VI, 2 stroke

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

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)

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)

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 f.bunn@Herts.ac.uk

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 f.bunn@herts.ac.uk