Presentation on theme: "Dr Frances Bunn Centre for Research in Primary & Community Care"— Presentation transcript:
1 Comorbidity and Dementia: improving health care for people with dementia (CoDem) Dr Frances BunnCentre for Research in Primary & Community CareUniversity of Hertfordshire
2 OverviewComorbidity and dementia: improving health care for people with dementia(CoDem)Background and introduction to studyPreliminary findings
3 Dementia and Comorbidity Funded by NIHR HS&DR ProgrammeLed by University of HertfordshireCollaborators: UCL, Cambridge University, Newcastle University, South Essex Partnership TrustSeptember 2012-April 2015Funded by Health Services and Delivery Research Programme
4 Background Many people with dementia may have other medical conditions Dementia often viewed as isolated conditionLittle is known about how services are organised for this vulnerable group orwhat 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 & comorbidityAimsExplore impact of comorbidities for people with dementia on access to non-dementia servicesIdentify ways of improving integration of services for this population, reducing fragmentation and inappropriate use of careWhat 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 focusFocus on 3 specific conditions: stroke, diabetes, visual impairment.Chosen because:Generally involve some form of external monitoringRequire collaboration between primary & secondary careCommon in older peopleDiabetes – self management may be complicated by presence of dementiaVI – may exacerbate confusionOur 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 databasePhase 2Interviews people with dementia/family carersFocus groups with clinicians involved in their carePhase 3Highlight interventions to support continuity & equity of accessStakeholder conference to develop and refine guidanceThere 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 practitionersCo-ordination across services & over timeInformation transferCoherent delivery of services for people with long term conditionsOur 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 serviceIncluded studies that looked at:Prevalence of comorbidities in people with dementiaQuality of care & access to servicesCurrent systems and structuresPatient & carer experiences
11 Scoping of literature Included 54 studies 28 focus on prevalence Other areas include quality of care, self-management, experiences & viewsType of comorbidityDiabetes 23, VI 14, Stroke 9
12 PrevalencePrevalence 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 careFound 9 studies comparing access to care in groups with & without dementia8/9 studies found some evidence that quality of care or access to services was poorer for people with dementia compared to those without dementiaLess likely to receive monitoring for conditions such as diabetes and visual impairmentReduced access to treatment such as intravenous thrombolysis for stroke, surgery for cataractsBayer et al 1994: Comorbid condition is neglected –professionals and carers have low expectations about the need for specialist diabetes careZhang et al 2010: Given less attention by professionals – less likely to use optometry services or diabetes health servicesDoucet 2008: Suggests management of diabetes patients often inadequate and inadequate follow up of these patientsSinclair 2000: Less likely to attend a diabetes clinic than those without dementiaYarnall 2012: 23% never saw a health professional about their diabetes.Guijarro 2010: less likely to have cataract surgeryLopponen 2004: less likely to be diagnosed with glaucoma
14 Issues relating to continuity Barriers to continuityCarers feel excluded from decision makingLack of joint workingProblems with self-managementModels of care focus on single conditionPoor communication between teamsCarers role & experience not recognisedLack 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 deliveryAiming to recruit people with dementia with each comorbidity (and/or carer)Currently recruited 13 people with diabetes, 5 VI, 2 strokeRecruiting participants in the East of England and the North East
16 Interviews: Preliminary findings People with dementia & carersVariation in careCarer has significant role in managing condition, medication, appointments etc.Some people reported negative experiences around transfer of information, lack of awareness amongst hospital staffHCP prioritise comorbidity over memory problemsSocial isolationVariation in care being received - Some see a regular GP and report positive experiences - the GP knows the patient and all their health conditionsPositive experiences of community nurses visiting some patients in their homeDiabetes - PWDs/carers often think of diabetes as a lesser condition compared with other health problemsThere 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 PWDCarer 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 memorySocial 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 concludePreliminary findings suggest lack of continuity of care, poorer access to servicesCoDem due to be completed in April 2015Study will add to our understanding of how having dementia impacts on the management of other health conditions.For more information contact
20 FunderThis 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