Providing care for people with dementia alongside other long-term conditions
This is the second in a series of six articles that aim to encourage nurse leaders to explore how to use research findings to improve practice and services where they work. The series focuses on research, funded by the National Institute for Health Research (NIHR), and included in NIHR Dissemination Centre publications. The authors seek to relate the content directly to the Nursing and Midwifery Councils code of professional standards of practice and behaviour, specifically the themes of practising safely and promoting professionalism and trustIntroduction by Elaine Maxwell, clinical adviser at the National Institute for Health Research Dissemination Centre:
This is the second in a series of six articles that aim to encourage nurse leaders to explore how to use research findings to improve practice and services where they work. The series focuses on research, funded by the National Institute for Health Research (NIHR), and included in NIHR Dissemination Centre publications. The authors seek to relate the content directly to the Nursing and Midwifery Council’s code of professional standards of practice and behaviour, specifically the themes of practising safely and promoting professionalism and trust
Introduction by Elaine Maxwell, clinical adviser at the National Institute for Health Research Dissemination Centre:
The National Institute for Health Research (NIHR) Dissemination Centre publishes high-quality evidence on specific health needs in short, easy-to-read summaries. One example is Supporting Carers of People with Dementia, from our Highlights series, which provides evidence at a glance, together with commentary and implications for practice.
There are estimated to be 850,000 people in the UK living with dementia, although not all have a formal medical diagnosis. A person’s risk of developing dementia rises from one in 14, for people over 65, to one in six, for those over 80 (Bunn et al 2016). At the same time, it is estimated that around 10 million have two or more long-term conditions and the risk of this too rises with age (Prince et al 2014).
It is therefore inevitable that some people will have dementia and at least one other long-term condition. Health and social care involving, for example, specialist nurses and whole-systems pathways has done much to improve the care of people with one long-term condition but designing services that meet the needs of people with multiple comorbidities remains a challenge.
In this article, we consider the challenge of researching this area by considering how one of the studies featured in our Highlight, Comorbidity and dementia: a mixed method study on improving healthcare for people with dementia (CoDem) (Bunn et al 2016), approached the subject and we look at how this study’s outputs can help senior nurses improve care provision.
Frances Bunn, professor in health and complex conditions at the University of Hertfordshire:
Why we did the research
Dementia is a significant public health problem with far reaching health, social and economic impacts and its prevalence in the UK is set to rise significantly. We knew from previous studies there is a high prevalence of comorbid medical conditions among people with dementia (Prince et al 2014). Despite this, research tended to focus on the experience of living with dementia as a single disease. Little was known about the effects of comorbidity on processes and quality of care, patient needs or how services were being adapted to address the needs of people with dementia.
We used theories about continuity of care (Parker et al 2011, Haggerty et al 2013) as a framework for the study. Continuity of care is a complex, multi-dimensional concept that refers 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. We knew from previous work that navigating different systems of care is particularly difficult for older people with complex needs. For example, they may receive advice and support from multiple health and social care providers as well as from the third sector. Moreover, people with dementia may be particularly vulnerable because they cannot negotiate the continuity of care they wish (Freeman et al 2007).
To make the study more manageable, we focused on three exemplar comorbid conditions in people with dementia: stroke, diabetes and visual impairment. These were chosen because they are common in older people, generally involve some form of external monitoring, and require collaboration between primary and secondary care. Moreover, management of these conditions is likely to be made more complicated by the presence of dementia.
Our study set out to address a broad range of research objectives and questions. We wanted to map out what was already known about comorbidity and dementia, identify how the presence of dementia affects access to healthcare and service delivery for comorbid conditions, identify barriers and facilitators to service delivery, and identify models of service delivery best suited to meet the needs of people who had dementia and other complex healthcare needs. As such, a mixed methods approach was deemed most appropriate.
'Dementia is a significant public health problem with far reaching health, social and economic impacts and its prevalence in the UK is set to rise significantly'
Mixed methods research involves collecting, analysing and integrating quantitative and qualitative data. This allows researchers to understand an issue better than they would do from either type of data alone (Creswell et al 2011), as is illustrated by the richness of our findings. For example, quantitative data from cross-sectional analysis of an existing population cohort database gave us information on the prevalence of comorbidities in people with dementia and how comorbidity affected their service use, whereas qualitative data, in the form of interviews and focus groups, helped us understand more about the experience of living with dementia and comorbidity from the perspective of people with dementia and their family carers.
We found that 17% of people living with dementia also had diabetes, 18% had had a stroke and 17% had some form of visual impairment.
Data from the scoping review suggested that people with dementia were more likely to receive poorer care and have less access to services than those with the same condition but without dementia.
Qualitative data from interviews and focus groups with healthcare professionals provided insight into how concerns around polypharmacy, the ability of a person living with dementia to cooperate with treatment, gaining meaningful consent, and the presence of a family carer to act as a proxy and provide information affected clinical decision-making and in turn access to care.
Both quantitative and qualitative data suggested that unpaid family carers of people living with dementia and comorbidity play a significant role in managing and coordinating the care of their relatives. Despite this, we found that systems are generally not designed to involve family carers in decision-making.
Helen Day, deputy director of nursing at South Tees Hospitals NHS Foundation Trust:
Dementia has become an increasingly significant healthcare and political focus over the past ten years. The associated publicity and educational campaigns have resulted, however, in a rather one-dimensional view of older people that fails to acknowledge the complexities of multiple comorbidities in our ageing population.
Reading this research from the perspective of a senior nurse in an acute setting, I likened the findings to Treat as One (National Confidential Enquiry into Patient Outcome and Death (NCEPOD) 2017), which highlighted how many patients with mental health problems were cared for in general settings where care was focused only on physical problems. This has led to a focus on the need to assess and care holistically for people, something we should have always been doing. This study on dementia and comorbidity (Bunn et al 2016) serves as another timely reminder of the need to address education and operational processes to ensure we effectively address comorbidities.
In the hospital setting, we are acutely aware of the correlation between length of stay and increased risk of patient harm, so it is important to treat patients safely, but quickly, throughout the system. Perceived boundaries between services block the fluidity and flexibility required for effective transitions and continuity of care. In practice, continuity of care for people with the complex needs of dementia and other long-term conditions is often managed by family carers as much as by health and social care professionals.
'In the hospital setting, we are acutely aware of the correlation between length of stay and increased risk of patient harm, so it is important to treat patients safely'
This article presents independent research commissioned by the National Institute for Health Research (NIHR) under Health Service (HS) and Delivery Research (DR) (Grant Reference Number 11/1017/07).
The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.
The sponsor of the study had no role in study design, data analysis, data interpretation or writing of the report.
Working with carers could therefore enhance discharge planning and contribute to the integration of many different care providers, but our current processes do not always make this easy.
The report does not reveal anything the reader probably did not suspect to be the case, but the findings provide a convenient framework on which any organisation can base a gap analysis and subsequent action planning. It encourages us to look past the basics and, for example, to realise that the concept of care ‘triangles’, which acknowledge family involvement, is central to continuity of care.
The desire by service users and their families to have continuity of relationship with other care providers and continuity of information from them is perhaps an obvious notion; however, the notion that care is not a linear process often eludes health and social care providers.
This research goes some way in helping us to consider the practices that impede best care and to develop initiatives that challenge these boundaries.
- Bunn F, Burn A-M, Goodman C et al (2016) Comorbidity and dementia: a mixed method study on improving healthcare for people with dementia (CoDem). Health Services and Delivery Research. 4, 8.
- Creswell JW, Klassen AC, Plano Clark VL et al (2011) Best Practices for Mixed Methods Research in the Health Sciences.
- Freeman GK, Woloshynowych M, Baker R et al (2007) Continuity of Care 2006: What have we learned since 2000 and what are policy imperatives now? Report for the National Coordinating Centre for NHS Service Delivery and Organisation R&D.
- Haggerty JL, Roberge D, Freeman GK et al (2013) Experienced continuity of care when patients see multiple clinicians: a qualitative metasummary. Annals of Family Medicine. 11, 3, 262-271.
- National Confidential Enquiry into Patient Outcome and Death (2017) Treat as One.
- Parker G, Corden A, Heaton J (2011) Experiences of and influences on continuity of care for service users and carers: synthesis of evidence from a research programme. Health and Social Care in the Community. 19, 6, 576-601.
- Prince M, Knapp M, Guerchet M et al (2014) Dementia UK: Update. Second Edition.
Using research findings to improve practice and services
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