What matters to people with multiple long-term conditions and their carers?

BACKGROUND: The number of people living with multiple long-term conditions is increasing worldwide. This presents challenges for health and care systems, which must adapt to meet the needs of this population. This study drew on existing data to understand what matters to people living with multiple long-term conditions and identify priorities for future research. METHODS: Two studies were conducted. (1) A secondary thematic analysis of interview, survey and workshop data collected from the 2017 James Lind Alliance Priority Setting Partnership for Older People with Multiple Conditions, and patient and public involvement workshops; (2) a review of ongoing research and published research priorities, relating to older people (80+) living with multiple long-term conditions. FINDINGS: Older people with multiple long-term conditions identified a number of key concerns: access to care, support for both the patient and their carer, physical and mental health and well-being and identifying opportunities for early prevention. The review identified no published research priorities or ongoing research focusing specifically on populations aged over 80 years with multiple long-term conditions. CONCLUSION: Older people living with multiple long-term conditions experience care that is inadequate for their needs. A holistic approach to care that extends beyond treating single conditions will ensure wide-ranging needs are met. As multimorbidity rises worldwide, this is a critical message for practitioners across health and care settings. We also recommend key areas that should be given greater focus in future research and policy to inform effective and meaningful forms of support for people living with multiple long-term conditions.

Exploring the role of human-following robots in supporting the mobility and wellbeing of older people.

With the ever-pressing challenges of societal ageing, robotic technologies for older people are increasingly portrayed as a solution for better independent living for longer. However, the application of human-following robots for elderly citizens has not yet been considered, and any prospective benefits offered by the technology for active ageing have previously been overlooked. This qualitative research aimed to explore older people's needs and requirements towards the human-following robot through the reflexive thematic analysis of semi-structured interview data from 17 independent older adults, supported by a video-based demonstration of the robot. The results indicate that older people believed that human-following robot has the potential to provide social benefits to an independent older adult by encouraging walking trips and prompting social interaction with others in the community. Practical limitations and cost of the robot are barriers to adoption at present. The findings indicate that there is potential for human-following robots to support active ageing, through increasing opportunities for the social participation of an older adult, but further development of the robot is needed for this potential to be realised.

A comparison over 2 decades of disability-free life expectancy at age 65 years for those with long-term conditions in England: Analysis of the 2 longitudinal Cognitive Function and Ageing Studies.

BACKGROUND: Previous research has examined the improvements in healthy years if different health conditions are eliminated, but often with cross-sectional data, or for a limited number of conditions. We used longitudinal data to estimate disability-free life expectancy (DFLE) trends for older people with a broad number of health conditions, identify the conditions that would result in the greatest improvement in DFLE, and describe the contribution of the underlying transitions. METHODS AND FINDINGS: The Cognitive Function and Ageing Studies (CFAS I and II) are both large population-based studies of those aged 65 years or over in England with identical sampling strategies (CFAS I response 81.7%, N = 7,635; CFAS II response 54.7%, N = 7,762). CFAS I baseline interviews were conducted in 1991 to 1993 and CFAS II baseline interviews in 2008 to 2011, both with 2 years of follow-up. Disability was measured using the modified Townsend activities of daily living scale. Long-term conditions (LTCs-arthritis, cognitive impairment, coronary heart disease (CHD), diabetes, hearing difficulties, peripheral vascular disease (PVD), respiratory difficulties, stroke, and vision impairment) were self-reported. Multistate models estimated life expectancy (LE) and DFLE, stratified by sex and study and adjusted for age. DFLE was estimated from the transitions between disability-free and disability states at the baseline and 2-year follow-up interviews, and LE was estimated from mortality transitions up to 4.5 years after baseline. In CFAS I, 60.8% were women and average age was 75.6 years; in CFAS II, 56.1% were women and average age was 76.4 years. Cognitive impairment was the only LTC whose prevalence decreased over time (odds ratio: 0.6, 95% confidence interval (CI): 0.5 to 0.6, p < 0.001), and where the percentage of remaining years at age 65 years spent disability-free decreased for men (difference CFAS II-CFAS I: -3.6%, 95% CI: -8.2 to 1.0, p = 0.12) and women (difference CFAS II-CFAS I: -3.9%, 95% CI: -7.6 to 0.0, p = 0.04) with the LTC. For men and women with any other LTC, DFLE improved or remained similar. For women with CHD, years with disability decreased (-0.8 years, 95% CI: -3.1 to 1.6, p = 0.50) and DFLE increased (2.7 years, 95% CI: 0.7 to 4.7, p = 0.008), stemming from a reduction in the risk of incident disability (relative risk ratio: 0.6, 95% CI: 0.4 to 0.8, p = 0.004). The main limitations of the study were the self-report of health conditions and the response rate. However, inverse probability weights for baseline nonresponse and longitudinal attrition were used to ensure population representativeness. CONCLUSIONS: In this study, we observed improvements to DFLE between 1991 and 2011 despite the presence of most health conditions we considered. Attention needs to be paid to support and care for people with cognitive impairment who had different outcomes to those with physical health conditions.

The contribution of multiple long-term conditions to widening inequalities in disability-free life expectancy over two decades: Longitudinal analysis of two cohorts using the Cognitive Function and Ageing Studies.

BACKGROUND: : Disability-free life expectancy (DFLE) inequalities by socioeconomic deprivation are widening, alongside rising prevalence of multiple long-term conditions (MLTCs). We use longitudinal data to assess whether MLTCs contribute to the widening DFLE inequalities by socioeconomic deprivation. METHODS: : The Cognitive Function and Ageing Studies (CFAS I and II) are large population-based studies of those ≥65 years, conducted in three areas in England. Baseline occurred in 1991 (CFAS I, n=7635) and 2011 (CFAS II, n=7762) with two-year follow-up. We defined disability as difficulty in activities of daily living, MLTCs as the presence of at least two of nine health conditions, and socioeconomic deprivation by area-level deprivation tertiles. DFLE and transitions between disability states and death were estimated from multistate models. FINDINGS: : For people with MLTCs, inequalities in DFLE at age 65 between the most and least affluent widened to around 2.5 years (men:2.4 years, 95% confidence interval (95%CI) 0.4-4.4; women:2.6 years, 95%CI 0.7-4.5) by 2011. Incident disability reduced for the most affluent women (Relative Risk Ratio (RRR):0.6, 95%CI 0.4-0.9), and mortality with disability reduced for least affluent men (RRR:0.6, 95%CI 0.5-0.8). MLTCs prevalence increased only for least affluent men (1991: 58.8%, 2011: 66.9%) and women (1991: 60.9%, 2011: 69.1%). However, DFLE inequalities were as large in people without MLTCs (men:2.4 years, 95%CI 0.3-4.5; women:3.1 years, 95% CI 0.8-5.4). INTERPRETATION: : Widening DFLE inequalities were not solely due to MLTCs. Reduced disability incidence with MLTCs is possible but was only achieved in the most affluent.

Healthy ageing for all? Comparisons of socioeconomic inequalities in health expectancies over two decades in the Cognitive Function and Ageing Studies I and II.

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.

What matters to people with multiple long-term conditions and their carers?

BACKGROUND: The number of people living with multiple long-term conditions is increasing worldwide. This presents challenges for health and care systems, which must adapt to meet the needs of this population. This study drew on existing data to understand what matters to people living with multiple long-term conditions and identify priorities for future research. METHODS: Two studies were conducted. (1) A secondary thematic analysis of interview, survey and workshop data collected from the 2017 James Lind Alliance Priority Setting Partnership for Older People with Multiple Conditions, and patient and public involvement workshops; (2) a review of ongoing research and published research priorities, relating to older people (80+) living with multiple long-term conditions. FINDINGS: Older people with multiple long-term conditions identified a number of key concerns: access to care, support for both the patient and their carer, physical and mental health and well-being and identifying opportunities for early prevention. The review identified no published research priorities or ongoing research focusing specifically on populations aged over 80 years with multiple long-term conditions. CONCLUSION: Older people living with multiple long-term conditions experience care that is inadequate for their needs. A holistic approach to care that extends beyond treating single conditions will ensure wide-ranging needs are met. As multimorbidity rises worldwide, this is a critical message for practitioners across health and care settings. We also recommend key areas that should be given greater focus in future research and policy to inform effective and meaningful forms of support for people living with multiple long-term conditions.

An intervention to improve outcomes of falls in dementia: the DIFRID mixed-methods feasibility study.

BACKGROUND: Fall-related injuries are a significant cause of morbidity and mortality in people with dementia. There is presently little evidence to guide the management of such injuries, and yet there are potentially substantial benefits to be gained if the outcomes of these injuries could be improved. This study aimed to design an appropriate new health-care intervention for people with dementia following a fall and to assess the feasibility of its delivery in the UK NHS. OBJECTIVES: To determine whether or not it is possible to design an intervention to improve outcomes of falls in dementia, to investigate the feasibility and acceptability of the DIFRID (Developing an Intervention for Fall related Injuries in Dementia) intervention and to investigate the feasibility of a future randomised controlled trial and the data collection tools needed to evaluate both the effectiveness and the cost-effectiveness of the DIFRID intervention. DESIGN: This was a mixed-methods feasibility study. A systematic review (using Cochrane methodology) and realist review [using Realist And Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) methodology] explored the existing evidence base and developed programme theories. Searches were carried out in November 2015 (updated in January 2018) for effectiveness studies and in August 2016 for economic studies. A prospective observational study identified service use via participant diary completion. Qualitative methods (semistructured interviews, focus groups and observation) were used to explore current practice, stakeholder perspectives of the health and social care needs of people with dementia following a fall, ideas for intervention and barriers to and facilitators of change. Each of the resulting data sets informed intervention development via Delphi consensus methods. Finally, a single-arm feasibility study with embedded process evaluation was conducted. SETTING: This study was set in the community. PARTICIPANTS: The participants were (1) people with dementia presenting with falls necessitating health-care attention in each setting (primary care, the community and secondary care) at three sites and their carers, (2) professionals delivering the intervention, who were responsible for training and supervision and who were members of the intervention team, (3) professionals responsible for approaching and recruiting participants and (4) carers of participants with dementia. INTERVENTIONS: This was a complex multidisciplinary therapy intervention. Physiotherapists, occupational therapists and support workers delivered up to 22 sessions of tailored activities in the home or local area of the person with dementia over a period of 12 weeks. MAIN OUTCOME MEASURES: (1) Assessment of feasibility of study procedures; (2) assessment of the acceptability, feasibility and fidelity of intervention components; and (3) assessment of the suitability and acceptability of outcome measures for people with dementia and their carers (number of falls, quality of life, fear of falling, activities of daily living, goal-setting, health-care utilisation and carer burden). RESULTS: A multidisciplinary intervention delivered in the homes of people with dementia was designed based on qualitative work, realist review and recommendations of the consensus panel. The intervention was delivered to 11 people with dementia. The study suggested that the intervention is both feasible and acceptable to stakeholders. A number of modifications were recommended to address some of the issues arising during feasibility testing. The measurement of outcome measures was successful. CONCLUSIONS: The study has highlighted the feasibility of delivering a creative, tailored, individual approach to intervention for people with dementia following a fall. Although the intervention required greater investment of time than usual practice, many staff valued the opportunity to work more closely with people with dementia and their carers. We conclude that further research is now needed to refine this intervention in the context of a pilot randomised controlled trial. TRIAL REGISTRATION: Current Controlled Trials ISRCTN41760734 and PROSPERO CRD42016029565. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 23, No. 59. See the NIHR Journals Library website for further project information.

People with dementia fall over more often than people who do not have dementia. When they fall over, they are more likely to hurt themselves. They do not get better as easily as people without dementia. After hurting themselves, people with dementia may need a lot more help in looking after themselves. They, and their carer, may not have such a good quality of life after the fall. In this study, we developed and tested a package of care to help people with dementia recover from a fall. In the first part of the study, we looked for papers about clinical trials that have tried to make things better for people with dementia who have had a fall. We found that there were very few previous clinical trials, but we found ideas for ways in which this could be improved. In the second part of the study, we found out what happens to people with dementia who ask for help after an injury due to a fall. We found that very few services were used by people with dementia who fall. We interviewed them and their carers to find out what help they thought they needed after the fall and what they thought we could do better. We also spoke to the staff in existing services to find out how they thought services for people with dementia could be improved. In the third part of the study, we asked a group of experts, people with dementia and their carers to look at the findings of the first two parts of the study. They helped us to design a care package for people with dementia after a fall. In the fourth part of the study, we practised giving the new care package to 11 people with dementia in their own homes. This was very successful and we now recommend that the package is tested further in randomised controlled clinical trials.

Continence technologies whitepaper: Informing new engineering science research.

Advances in healthcare technology for continence have historically been limited compared to other areas of medicine, reflecting the complexities of the condition and social stigma which act as a barrier to participation. This whitepaper has been developed to inspire and direct the engineering science community towards research opportunities that exist for continence technologies that address unmet needs in diagnosis, treatment and long-term management. Our aim is to pinpoint key challenges and highlight related research opportunities for novel technological advances. To do so, we draw on experience and expertise from academics, clinicians, patients and patient groups linked to continence healthcare. This is presented in four areas of consideration: the clinical pathway, patient perspective, research challenges and effective innovation. In each we introduce seminal research, background information and demonstrative case-studies, before discussing their relevance to engineering science researchers who are interested in approaching this overlooked but vital area of healthcare.

Is it feasible to deliver a complex intervention to improve the outcome of falls in people with dementia? A protocol for the DIFRID feasibility study.

BACKGROUND: People with dementia (PWD) experience ten times as many incident falls as people without dementia. Little is known about how best to deliver services to people with dementia following a fall. We used an integrated, mixed-methods approach to develop a new intervention which combines theory generated via a realist synthesis and data on current provision and pathways, gathered through a prospective observational study as well as qualitative interviews, focus groups and ethnographic observation. This intervention is to be tested in a feasibility study in the UK National Health Service. METHODS: People living with dementia in one of three geographical areas will be eligible for the study if they experience a fall requiring healthcare attention and have an informal carer. Potential participants will be identified by community services (primary care, paramedics, telecare), secondary care (ED, facilitated discharge services, rehabilitation outreach teams) and research case registers. Participants will receive a complex multidisciplinary intervention focused on their goals and interests for up to 12 weeks. The intervention will be delivered by occupational therapists, physiotherapists and rehabilitation support workers. Feasibility outcomes will include recruitment and retention, suitability and acceptability of outcome measures and acceptability, feasibility and fidelity of intervention components. PWD outcome measures will include number of falls, Montreal Cognitive Assessment (MOCA), European Quality of Life Instrument (EQ-5D-5L), Quality of Life-Alzheimer's Disease Scale (QOL-AD), Modified Falls Efficacy Scale (MFES) and Goal Attainment Scaling (GAS). PWD outcome measures completed by an informal carer will include Disability Assessment for Dementia (DAD), EQ-5D-5L Proxy, QoL-AD Proxy and a Health Utilisation Questionnaire (HUQ). The carer outcome measure will be the Zarit Burden Interview (ZBI). An embedded process evaluation will explore barriers and facilitators to recruitment and intervention delivery. DISCUSSION: The study results will inform whether and how a larger multicentre RCT should be undertaken. A full RCT would have the potential to show how outcomes can be improved for people with dementia who have fallen. ETHICS AND DISSEMINATION: The National Research Ethics Service Committee Newcastle and North Tyneside 2 approved the feasibility study. TRIAL REGISTRATION: International Standard Randomised Controlled Trial Registry. Registration number: ISRCTN41760734. Date of registration: 16/11/2015.

A roadmap to advance dementia research in prevention, diagnosis, intervention, and care by 2025.

OBJECTIVE: National and global dementia plans have focused on the research ambition to develop a cure or disease-modifying therapy by 2025, with the initial focus on investment in drug discovery approaches. We set out to develop complementary research ambitions in the areas of prevention, diagnosis, intervention, and care and strategies for achieving them. METHODS: Alzheimer's Society facilitated a taskforce of leading UK clinicians and researchers in dementia, UK funders of dementia research, people with dementia, and carer representatives to develop, using iterative consensus methodology, goals and recommendations to advance dementia research. RESULTS: The taskforce developed 5 goals and 30 recommendations. The goals focused on preventing future cases of dementia through risk reduction, maximising the benefit of a dementia diagnosis, improving quality of life, enabling the dementia workforce to improve practice, and optimising the quality and inclusivity of health and social care systems. Recommendations addressed gaps in knowledge and limitations in research methodology or infrastructure that would facilitate research in prioritised areas. A 10-point action plan provides strategies for delivering the proposed research agenda. CONCLUSIONS: By creating complementary goals for research that mirror the need to find effective treatments, we provide a framework that enables a focus for new investment and initiatives. This will support a broader and more holistic approach to research on dementia, addressing prevention, surveillance of population changes in risk and expression of dementia, the diagnostic process, diagnosis itself, interventions, social support, and care for people with dementia and their families.

"We're all thrown in the same boat ": A qualitative analysis of peer support in dementia care.

Peer support is well established in fields such as the disability movement and mental health and is increasingly recognised as one way of enabling support by and for people with a diagnosis of dementia and their immediate carers. It was central to the implementation of the National Dementia Strategy (NDS) for England, when 40 demonstration sites were established. This mixed-methods study included in-depth qualitative interviews with people living with dementia (n = 101) and staff/stakeholders (n = 82) at 8 of the 40 sites. Data analysis was a five-stage process: coding framework developed (using 25 transcripts); further development of the framework (using a further 70 transcripts); development of emerging themes; modelling of themes and verification of models based on the entire data set. Peer support had positive emotional and social impact that was rooted in identification with others, a commonality of experience and reciprocity of support. There was also a contrast between the quality of peer support and support from professionals. This emphasises the significance of lived experience and promoting a strength-based approach to interpersonal support that is enabling and challenges a deficit approach to understanding dementia.

Organisational space for partnership and sustainability: lessons from the implementation of the National Dementia Strategy for England.

National policy initiatives are faced with challenges in their partnership development and sustainability. The National Dementia Strategy for England recommended Dementia Adviser (DA) and Peer Support Network (PSN) services and 40 demonstration sites were established. In this paper, we report on the national evaluation of these demonstration sites, with specific reference to aspects of organisational development. The research used a mixed-methods design with three main strands: (i) activity and outcome monitoring; (ii) organisational surveys and collaborative discussion; (iii) in-depth case studies in eight of the 40 sites. This paper focuses primarily on three rounds of organisational surveys distributed to all 40 demonstration sites over a period of 21 months and interviews in the case studies. Data identify the significance of infrastructure within immediate services as well as the position of services within the external infrastructure of the wider health and social care landscape. Partnership - both internally and externally - was key to establishing and sustaining services that flourished. When working well, DAs and PSNs acted as a link between services and people with dementia at the same time as filling gaps in existing support, providing information, advice and interpersonal support that was tailored to individual needs and circumstances. In conclusion, to achieve the full potential and sustainability of services requires them to be in an organisational space that allows them to work in partnership and collaboration with other services, and that values their distinct knowledge of their communities.

Ageing in place and technologies of place: the lived experience of people with dementia in changing social, physical and technological environments.

Abstract This paper explores the varied meanings and lived experiences of older people with dementia, in relation to everyday technologies in public spaces outside the home, through re-analysis of qualitative data generated from research that focused on the use of technology in supporting people with dementia to carry on with their everyday outside activities. The data have been re-analysed to critically examine how people with memory loss manage being outside in both familiar and unfamiliar public environments. In doing so the authors explore how technologies mediate between the physical and social environment in which people with dementia live. This paper highlights the importance of a neglected space within dementia research, namely the outside public environment. Although the outside environment and activities that take place in that space, for some, are curtailed, for others the physical and social security of familiar environments enables them to carry on with everyday activities in this public realm. Outside space can be both therapeutic and frightening and this paper demonstrates that people with dementia can sometimes feel out of place in public space. It however also shows the variety of ways people with dementia use everyday technologies to manage 'feeling out of place'.