BackgroundAmong people living with dementia (PLWD) there is a high prevalence of comorbid medical conditions but little is known about the effects of comorbidity on processes and quality of care and patient needs or how services are adapting to address the particular needs of this population.ObjectivesTo explore the impact of dementia on access to non-dementia services and identify ways of improving the integration of services for this population.DesignWe undertook a scoping review, cross-sectional analysis of a population cohort database, interviews with PLWD and comorbidity and their family carers and focus groups or interviews with health-care professionals (HCPs). We focused specifically on three conditions: diabetes, stroke and vision impairment (VI). The analysis was informed by theories of continuity of care and access to care.ParticipantsThe study included 28 community-dwelling PLWD with one of our target comorbidities, 33 family carers and 56 HCPs specialising in diabetes, stroke, VI or primary care.ResultsThe scoping review (n = 76 studies or reports) found a lack of continuity in health-care systems for PLWD and comorbidity, with little integration or communication between different teams and specialities. PLWD had poorer access to services than those without dementia. Analysis of a population cohort database found that 17% of PLWD had diabetes, 18% had had a stroke and 17% had some form of VI. There has been an increase in the use of unpaid care for PLWD and comorbidity over the last decade. Our qualitative data supported the findings of the scoping review: communication was often poor, with an absence of a standardised approach to sharing information about a person’s dementia and how it might affect the management of other conditions. Although HCPs acknowledged the vital role that family carers play in managing health-care conditions of PLWD and facilitating continuity and access to care, this recognition did not translate into their routine involvement in appointments or decision-making about their family member. Although we found examples of good practice, these tended to be about the behaviour of individual practitioners rather than system-based approaches; current systems may unintentionally block access to care for PLWD. Pathways and guidelines for our three target conditions do not address the possibility of a dementia diagnosis or provide decision-making support for practitioners trying to weigh up the risks and benefits of treatment for PLWD.ConclusionsSignificant numbers of PLWD have comorbid conditions such as stroke, diabetes and VI. The presence of dementia complicates the delivery of health and social care and magnifies the difficulties that people with long-term conditions experience. Key elements of good care for PLWD and comorbidity include having the PLWD and family carer at the centre, flexibility around processes and good communication which ensures that all services are aware when someone has a diagnosis of dementia. The impact of a diagnosis of dementia on pre-existing conditions should be incorporated into guidelines and care planning. Future work needs to focus on the development and evaluation of interventions to improve continuity of care and access to services for PLWD with comorbidity.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

BackgroundThere have been fundamental shifts in the attitude towards, access to and nature of long term care in high income countries. The proportion and profile of the older population living in such settings varies according to social, cultural, and economic characteristics as well as governmental policies. Changes in the profiles of people in different settings are important for policy makers and care providers. Although details will differ, how change occurs across time is important to all, including lower and middle income countries developing policies themselves. Here change is examined across two decades in England.Methods and FindingsUsing the two Cognitive Function and Ageing Studies (CFAS I: 77% response, CFAS II: 56% response), two population based studies of older people carried out in the same areas conducted two decades apart, the study diagnosis of dementia using the Automated Geriatric Examination for Computer Assisted Taxonomy, health and wellbeing were examined, focusing on long term care. The proportion of individuals with three or more health conditions increased for everyone living in long term care between CFAS I (47.6%, 95% CI: 42.3–53.1) and CFAS II (62.7%, 95% CI: 54.8–70.0) and was consistently higher in those without dementia compared to those with dementia in both studies. Functional impairment measured by activities of daily living increased in assisted living facilities from 48% (95% CI: 44%-52%) to 67% (95% CI: 62%-71%).ConclusionsHealth profiles of residents in long term care have changed dramatically over time. Dementia prevalence and reporting multiple health conditions have increased. Receiving care in the community puts pressure on unpaid carers and formal services; these results have implications for policies about supporting people at home as well as for service provision within long term care including quality of care, health management, cost, and the development of a skilled, caring, and informed workforce.

BackgroundWith declining rates of participation in epidemiological studies there is an important need to attempt to understand what factors might affect response. This study examines the pattern of response at different adult ages within a contemporary cross-sectional population-based cohort, the Cambridge Centre for Ageing and Neuroscience (Cam-CAN).MethodsUsing logistic regression, we investigated associations between age, gender and Townsend deprivation level for both participants and non-participants. Weighted estimates of the odds ratios with confidence intervals for each demographic characteristic were calculated. Reasons given for refusal were grouped into three broad categories: ‘active’, ‘passive’ and illness preventing interview.ResultsAn association of age and participation was found, with individuals in middle age groups more likely to participate (age group 48–57 OR: 1.8, 95% CI: 1.5–2.2 and age group 58–67 OR: 2.1, 95% CI: 1.7–2.4). Overall, there was no difference in participation between men and women. An association with deprivation was found, with those living in the most deprived areas being the least willing to participate (fifth quintile OR: 0.6, 95% CI: 0.5–0.7). An interaction between age and gender was found whereby younger women and older men were more likely to agree to participate (p = 0.01).ConclusionOur findings highlight some of the factors affecting recruitment into epidemiological studies in the UK and suggest that targeted age-specific recruitment strategies might be needed to increase participation rates in future cohort investigations.Electronic supplementary materialThe online version of this article (10.1186/s12889-018-5663-7) contains supplementary material, which is available to authorized users.

Background Despite increasing life expectancy (LE), cross-sectional data show widening inequalities in disability-free LE (DFLE) by socioeconomic status (SES) in many countries. We use longitudinal data to better understand trends in DFLE and years independent (IndLE) by SES, and how underlying transitions contribute. Methods The Cognitive Function and Ageing Studies (CFAS I and II) are large population-based studies of those aged ≥65 years in three English centres (Newcastle, Nottingham, Cambridgeshire), with baseline around 1991 (CFAS I, n = 7635) and 2011 (CFAS II, n = 7762) and 2-year follow-up. We defined disability as difficulty in activities of daily living (ADL), dependency by combining ADLs and cognition reflecting care required, and SES by area-level deprivation. Transitions between disability or dependency states and death were estimated from multistate models. Results Between 1991 and 2011, gains in DFLE at age 65 were greatest for the most advantaged men and women [men: 4.7 years, 95% confidence interval (95% CI) 3.3–6.2; women: 2.8 years, 95% CI 1.3–4.3]. Gains were due to the most advantaged women having a reduced risk of incident disability [relative risk ratio (RRR):0.7, 95% CI 0.5–0.8], whereas the most advantaged men had a greater likelihood of recovery (RRR: 1.8, 95% CI 1.0–3.2) and reduced disability-free mortality risk (RRR: 0.4, 95% CI 0.3–0.6]. Risk of death from disability decreased for least advantaged men (RRR: 0.7, 95% CI 0.6–0.9); least advantaged women showed little improvement in transitions. IndLE patterns across time were similar. Conclusions Prevention should target the most disadvantaged areas, to narrow inequalities, with clear indication from the most advantaged that reduction in poor transitions is achievable.