In the UK people living with dementia have, on average, around five chronic medical conditions, such as stroke, diabetes or visual impairment, in addition to their dementia. The CoDem study, led by University of Hertfordshire, found people with dementia and comorbidity have poorer access to healthcare services than those without dementia, with little communication between different teams and specialities, and a lack of continuity of care. The findings highlight the need for a significant change in the way care is organised and delivered but, in the short term, researchers have identified a set of practical, deliverable interventions that can make an immediate impact.
Key findings and recommendations
- Ensure all healthcare staff know whether a patient has dementia before they are seen by flagging up a dementia diagnosis on medical records. The study found people were often treated for conditions such as diabetes or visual impairment without healthcare providers knowing beforehand that they had dementia, which made assessment and treatment more difficult.
- Continuity of care is crucial; people living with dementia should be seen by the same healthcare professional wherever possible. Patients found it difficult to navigate multiple health services. They routinely received advice and support for different conditions from different sectors across health and social care.
- Provide longer health appointments for people living with dementia. Researchers found standard-length GP appointments are often not sufficient to meet the complex care needs of those with dementia and other complex conditions.
- Always include family carers in decision making; ask people with dementia for permission to share information like appointment reminders and treatment records with specified family members. Current systems of care do not sufficiently involve family carers, hindering their ability to look after their relatives and placing patients’ health at risk.
- Ensure people with dementia are not dropped from the system for missing appointments; where possible avoid booking appointments by phone. The study identified several cases where healthcare providers did not recognise their patients were struggling to manage conditions such as stroke or diabetes due to the worsening of their dementia. This sometimes resulted in missed medication and appointments.
- Improve training on dementia and comorbidity for staff at all levels. The research suggested some training should be tailored to specific conditions, for example identifying the best strategies for the rehabilitation of people with dementia, who have had a stroke.
“We know that dementia rarely travels alone. Medicine and research has so often treated people as having single diseases, and it’s crucially important that we consider how diseases impact on each other and the necessary care plans around them. There are practical steps, highlighted through this research and last year’s All Party Parliamentary Group inquiry into dementia and other conditions, which can improve the care and healthcare experience of people with dementia.”
Dr James Pickett, Head of Research at Alzheimer’s Society
A video animation also captures some of the key findings and recommendations from the CoDem study:
One fifth of people living with dementia in the UK have other chronic medical conditions. Despite this, dementia is often viewed as an isolated condition with little understanding of how other complex health needs might impact on patients and carers, and healthcare provision.
The CoDem study, funded by the National Institute for Health Research, explored the impact of comorbidities for a person living with dementia on access to non-dementia services in order to identify ways of improving integration of services for this population. There was a specific focus on three conditions: diabetes, stroke and vision impairment.
The study was led by researchers at the Centre for Research in Primary and Community Care, University of Hertfordshire. Frances Bunn, Professor in Health and Complex Conditions, was the principal investigator. Collaborating institutions were the University of Cambridge, Newcastle University, UCL, King’s College London and the East London NHS Foundation Trust.
Researchers undertook a review of the literature, analysing more than 70 studies and reports that addressed issues around dementia and comorbidity. They carried out interviews with 28 people people with dementia, 33 family carers and 56 healthcare professionals. They also brought together healthcare professionals, representatives from the voluntary sector and members of the public to develop recommendations for changes in healthcare practice.
Discussion of findings
Dementia and poorer access to healthcare
Data from the analysis of 76 studies and reports that address issues around dementia and comorbidity suggest the rate of diabetes in people with dementia may be between 13 per cent and 20 per cent, and that of stroke may be between 16% and 29%. Of the 11 studies that compared access to treatment or receipt of healthcare services in groups with and without dementia, 10 found evidence that people with dementia were less likely to receive the same quality of care or access to care than those without dementia.
The presence of dementia complicates the delivery of healthcare and magnifies the known difficulties that people with long-term conditions experience when navigating health and social care. The study found many examples in which systems or environments had unintentionally blocked access to care for people living with dementia, for example appointments made over the telephone, long waits in busy clinics, tests that were not appropriate for people with dementia, new technology introduced without proper explanation and a failure to engage with social care as the main source of support for people living with dementia at home.
People with dementia who live alone, or who do not have family support may be particularly disadvantaged and may need additional help to navigate systems and access care.
Despite evidence of awareness among staff that people with dementia could need more time for consultations, clinic structures and pressures of patient numbers meant that there was generally little capacity to achieve this. Pathways and guidelines for the study’s three target conditions of diabetes, stroke and visual impairment did 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 people with dementia.
Many healthcare practitioners that were interviewed said they felt underprepared to care for people living with dementia. There were examples of good practice but this tended to be about the behaviour of individual practitioners rather than system-based approaches.
“There are a number of small improvements that could be made right now that would make a big difference to vulnerable patients and their family carers.”
Professor Frances Bunn, CoDem study lead.
Lack of continuity of care and the importance of family carers
The absence of a standardised approach to sharing information about a person’s dementia and how it might affect the management of other conditions was a recurrent issue. This affected how appointments were planned and organised and how carers were involved.
Healthcare providers involved in delivering care for people with diabetes, stroke or visual impairment said they were often unaware that someone had dementia. They were frequently only made aware of a dementia diagnosis through information provided by family carers attending appointments and transferring information between specialities.
Researchers found family carers play a significant role in managing and co-ordinating the care of their relative; this sometimes involved having to learn new skills such as checking blood sugar or giving insulin injections.
For a person living with dementia, the transition from self-management to dependency could be gradual or sudden and was often unpredictable or understood only in hindsight. Healthcare providers acknowledged the vital role that family carers play but, from carers’ accounts, it was clear that this recognition did not translate into routine involvement or engagement of family carers in appointments or decision-making about their family member.
“Our study highlights not only how family carers are often responsible for negotiating continuity and access for family members with dementia but also how care systems often hinder rather than support their efforts.”
Professor Frances Bunn, CoDem study lead.
What does good healthcare for someone with dementia look like?
The delivery of high-quality care to patients with dementia demands a particularly high standard of care across multiple domains, including communication, multidisciplinary care, clinical decision-making and engagement with families and carers.
The study suggests that systems for booking appointments need to be made more ‘dementia friendly’, for example, sending reminders, including nominated family carers in all correspondence and not booking appointments by telephone.
Healthcare providers in specialist areas are often unaware that someone has dementia. Our evidence suggests that a diagnosis of dementia should be flagged up on medical/electronic records. This should include systems for automatic updates of a dementia diagnosis to be transferred to health-care services that a person with dementia is already attending. This will enable healthcare professionals to take into account the impact of a diagnosis of dementia on pre-existing conditions and incorporating this into guidelines and care planning.
People living with dementia may need a suitably trained staff member to help them navigate clinic environments; they may also benefit from assessments carried out by specialists in their own home or at their local general practice surgery.
Evidence suggests that there is a need for better integration of physical and mental health-care systems, that is, old-age psychiatry teams and geriatric teams working together and community-based geriatric teams having specialist mental health care as an integral part of the team.
Continuity of care can be promoted by ensuring, where possible, patients are seen by the same healthcare professional at each appointment.
About the lead study author
Frances Bunn is a Professor in Health and Complex Conditions. She trained as a nurse at Kings College London before moving into healthcare research. Key areas of interest are dementia, comorbidity, older people with complex health needs, and evidence-informed practice and policy.
Recent work includes NIHR funded studies on the diagnosis and treatment of dementia (EXPLORE DD), the delivery of healthcare services for people with dementia and a comorbid condition (CoDem), dementia case finding (CASCADE), the management of diabetes in people with dementia (DIaMonD) and shared decision making for older people with complex health and social care needs (RESPOND).
Professor Bunn can be contacted at email@example.com
This policy brief is based on research published in peer-reviewed journals.
The following paper titled Comorbidity and dementia: a mixed-method study on improving healthcare for people with dementia (CoDem) and was published in the NIHR journal Health Services and Delivery Research:
Comorbidity and dementia: a mixed-method study on improving health care for people with dementia…
Health Services and Delivery Research Volume: 4, Issue: 8, Published in February 2016
This paper titled Healthcare organisation and delivery for people with dementia and comorbidity: a qualitative study exploring the views of patients, carers and professionals was published in BMJ Open:
Healthcare organisation and delivery for people with dementia and comorbidity: a qualitative study…
Objectives People living with dementia (PLWD) have a high prevalence of comorbidty. The aim of this study was to…
The NIHR published this ‘Signal’ briefing on the CoDem study, titled Coordinating care for people with long term conditions and dementia: room for improvement:
This briefing presents independent research commissioned by NIHR. The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health.