Title: Comorbidity and dementia: improving healthcare for people with dementia. (CoDem)
Funder: Department of Health (England)

Abstract: Conceptual frameworkA mixed method approach is proposed informed by theories about continuity of care. This will enable us to capture the impact of living with dementia and other conditions for patients carers and health care providers address how the presence of different providers in a variety of organisations increases or lessens the risk of fragmentation and identify how continuity may be enhanced for this vulnerable group. The work will be undertaken by an experienced team of researchers and clinicians with well established collaborative working and will be overseen by advisory and user reference groups.Research PlanThere are 3 phases to the research. These are:Phase 1 •Scoping of current evidence on patient need and systems and structures that exist for the care of people with dementia (PWD) and comorbid medical conditions •Cross sectional analysis of a population cohort database to explore health and social service use in PWD and a comorbid medication condition. Phase 2 •In-depth interviews with PWD and a comorbid medical condition and their carers •Focus groups or interviews with clinicians involved in their care Phase 3 •Map current models of care and how the presence of dementia with one or more comorbid conditions is addressed by service providers•Highlight interventions that support continuity and equity of care that can be incorporated into current models of service delivery •Develop and refine guidance about how services should engage with people with dementia and their carersWe will focus on 3 exemplar comorbid medical conditions stroke diabetes and visual impairment. The rationale being that these conditions are common in older people and management and clinical decision making processes are likely to be complicated by the presence of dementia. Moreover stroke and diabetes are thought to influence the progression of dementia and visual impairment may exacerbate confusion. Phase 1 – scopingThe scoping will provide an overview of current knowledge on prevalence patient need current systems and structures and gaps in knowledge. The scoping will be guided by Arksey and O’Malley’s six stage methodological framework. This includes: identifying the research question searching for relevant studies selecting studies charting the data collating summarizing and reporting the results and consulting with stakeholders. We will include all types of literature published and unpublished including documents relating to current guidance and advice on meeting the health care needs of PWD and other medical conditions. We will draw on international literature if considered relevant to the UK. Literature will be identified using electronic database searches lateral searches and contact with experts. Data will be presented in a narrative synthesis and findings discussed with key stakeholders.Phase 1 – secondary data analysisThe MRC Cognitive Function and Ageing Studies (CFAS & CFASII) will be used to estimate the prevalence of the target comorbid medical conditions (stroke diabetes and visual impairment) amongst people with incident (CFAS) or prevalent (CFASII) dementia. Service use associated with the presence of dementia and the target comorbidities will be estimated.Analysis: The CFAS and CFASII cohorts will be grouped as dementia or no dementia based on the AMS AGECAT. For each grouping the age standardised prevalence of the target comorbidities will be calculated. Analysis will consider the retrospective use of health and local authority services over the past four weeks and the number of inpatient and outpatient hospital visits over the past three months. Where appropriate linear logistic or Poisson regression will be employed. All analyses will control for confounding factors such as age sex and place of residence. Sensitivity analysis examining findings across age groups sex and centre will be undertaken to ensure the robustness of the findings.Phase 2- Focus Groups & interviews We propose to conduct in-depth semi-structured interviews and focus groups with purposive samples of:a) PWD with at least one of our target non dementia specific health related problems (e.g. stroke diabetes visual impairment)b) Family/unpaid carers of PWD c) Clinicians in both primary & secondary care (with a range of experience and interest) who organise and deliver care for our specified comorbid conditionsParticipants will be recruited from two geographical regions. At each site we aim to conduct 15-25 interviews with PWD and their family carers and 3 focus groups with primary and specialist service professionals. Interview schedules will be guided by the scoping and thematic content analysis used to identify key features of patient carer and clinicians experiences and barriers and facilitators to effective service provision. Phase 3 We propose to hold a confirmatory conference using nominal group techniques to present and discuss study findings and develop practical guidance about how services should be organised and delivered for people with dementia and comorbid medical conditions.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: MENTAL HEALTH