Managing diabetes mellitus and dementia: a nursing overview
Intended for healthcare professionals
Evidence and practice    

Managing diabetes mellitus and dementia: a nursing overview

Florence Sharkey Lecturer in nursing, School of Nursing and Paramedic Science, Faculty of Life and Health Science, Ulster University, Londonderry, Northern Ireland
Vivien Coates Professor of nursing practice research, School of Nursing and Paramedic Science, Faculty of Life and Health Science, Ulster University, Londonderry, Northern Ireland

Why you should read this article:
  • To understand the challenges of managing diabetes mellitus alongside dementia

  • To learn about the importance of sharing patient information among healthcare professionals in various settings

  • To consider how the use of IT might promote more effective communication between specialties

Background Managing diabetes mellitus alongside the onset and development of dementia poses many challenges for those living with these conditions as well as their families, carers and service providers.

Aim To describe nurses’ positive experiences when managing adults with diabetes and dementia, as well as the issues and challenges.

Method Qualitative, semi-structured focus group interviews were conducted with community and diabetes specialist nurses drawn from five health and social care trusts.

Findings Four themes were identified: whose responsibility is it?; community and diabetes specialist nurses – the pivot point; education to manage comorbidities; and interprofessional communication.

Conclusion Community and diabetes specialist nurses experience many challenges when supporting individuals living with diabetes and dementia. Sharing patient information among practitioners in different settings is critically important. IT could overcome the limitations of note-keeping ‘silos’, but further education is recommended to establish more effective communication and partnership working.

Primary Health Care. doi: 10.7748/phc.2024.e1819

Peer review

This article has been subject to external double-blind peer review and checked for plagiarism using automated software

@FloSharkey

Correspondence

f.sharkey@ulster.ac.uk

Conflict of interest

None declared

Sharkey F, Coates V (2024) Managing diabetes mellitus and dementia: a nursing overview. Primary Health Care. doi: 10.7748/phc.2024.e1819

Acknowledgements

The work was supported by the Health and Social Care Research and Development Division of the Public Health Agency, Northern Ireland (grant number COM/5537/19) and the Florence Nightingale Foundation, England, as part of a research intern scholarship

Published online: 10 January 2024

Introduction

Approximately 55 million people around the world live with dementia (World Health Organization (WHO) 2023a). This is set to increase to 75.6 million by 2030 and to between 135.5 million and 152 million by 2050 (Alzheimer’s Research UK 2021, Prince 2023). About 422 million people worldwide have type 1 or type 2 diabetes, with the condition directly responsible for 1.5 million deaths each year (WHO 2023b). The rates of diabetes mellitus for those with dementia are estimated at between 13% and 20% (Bunn et al 2014). This article describes a study undertaken to explore the perceptions of community nurses and diabetes specialist nurses of their challenges and successes in caring for adults with diabetes and dementia.

Background

A discussion with local clinicians working in diabetes care indicated to the authors that diabetes and dementia present a dual challenge. A review was therefore undertaken to scope the literature on this topic.

The review found that people with diabetes and dementia experience extraordinary challenges when performing activities of self-care such as taking medicines, monitoring blood glucose levels and eating healthily (Sharkey and Coates 2023). The main issues found in the review were medicines management, management of dietary requirements, and a lack of information and support. People’s ability to manage their diabetes declines as their dementia progresses – something Fox and Kilvert (2014) described as moving from active self-management to passive non-management. Carers reported that caring for someone with the two conditions was highly burdensome; they felt overwhelmed and wanted more support from family and patients’ healthcare providers (Feil et al 2011).

Healthcare professionals are likely to have a particularly important role in the prevention, diagnosis and integrated management of diabetes in the community (O’Flynn 2022, Diabetes UK 2023). They are also most often involved when considering factors such as nutritional status, medicines management, diabetes control and lifestyle to support those with the comorbidities of diabetes and dementia (British Dietetic Association 2023).

Nevertheless, evidence to inform practice relating to this challenging area is sparse. The literature review found few examples of solutions to improve the management of diabetes for those with dementia. There was also very little information about healthcare professionals’ experiences of supporting these individuals, their families and carers and which could be used to address the needs of those with dementia and improve the management of their diabetes (Sharkey and Coates 2023).

This study was therefore undertaken to explore these issues.

Study

Aim

This study aimed to describe nurses’ positive experiences when managing adults with diabetes and dementia, as well as the issues and challenges.

Method

A qualitative study was conducted with diabetes specialist nurses, community staff nurses, district nurses and district sisters in Northern Ireland. Data collection comprised a questionnaire and focus group interviews conducted at the participants’ regional group meetings or NHS trust group meetings. The coronavirus disease 2019 (COVID-19) pandemic restrictions in health services meant face-to-face group interviews were not possible, so interviews were conducted using the online video-conferencing platform Zoom.

Recruitment

The lead researcher (FS) used her professional networks to purposively select healthcare providers engaged in the management of patients with dementia and diabetes across five NHS health and social care trusts in Northern Ireland. Those eligible to take part were community nurses working in the trust and diabetes specialist nurses working at hospital and community facilities in the region.

A letter of invitation and a participant information sheet were sent to all potential participants. The lead researcher contacted those who expressed an interest in participating by email or mobile phone. Each participant signed a consent form to demonstrate informed consent to take part in the study and for the interviews to be recorded. A total of 15 nurses agreed to participate.

Questionnaire and focus group interviews

A short questionnaire was emailed to each participant to determine the cohort’s demographic characteristics. The questionnaire asked questions about work setting, years of experience, staff grading, previous training in dementia and diabetes, and work experience. The participants returned the completed questionnaires by email.

The focus group interviews were conducted in May 2022 and followed a semi-structured guide. Each group interview was roughly 45 minutes in duration. The interviewer (FS) and the participants remained in their own workplaces during the interviews, which were undertaken digitally. The participants consented to the interviewer being accompanied by a fellow researcher (VC) who took notes.

Three focus group interviews were conducted; focus group one included five participants, focus group two included seven participants, and focus group three included three participants. Following the interviews and focus groups, no further interviews were conducted because no new insights or unique data were being provided.

Audio recordings of the focus group interviews were transcribed and given anonymous ID codes. The two researchers coded the data. Framework analysis methods (Ritchie and Spencer 1994) were used to identify overarching themes and subthemes aligned with those of Lorig and Holman’s (2003) framework for the self-management of long-term conditions.

Implications for practice

  • The findings from this study emphasised that people with diabetes mellitus and dementia have complex needs and their care requires integrated, multidisciplinary expertise in community and hospital settings

  • Dementia and diabetes are increasingly common conditions, and health services need to be adequately prepared to support people with these conditions, as well as their families and carers

  • Every effort should be made to enable community nurses and diabetes specialist nurses to receive education in these two co-morbidities to enable person-centred care

  • This study’s participants suggested that training in diabetes and dementia as co-morbidities should be integrated rather than provided as separate standalone courses

Ethical approval

The study followed the principles of the Committee on Publication Ethics (COPE) (2022). Ethical and research governance approval for the study was obtained from a research and development governance department through the Integrated Research Application System (www.myresearchproject.org.uk/). All data were anonymised and the participants were asked not to share any information discussed in the interviews, to ensure confidentiality. All participants could withdraw from the study at any time. There was no reward for participating in the study.

Findings

Cohort demographics

Table 1 shows the demographic information obtained from the questionnaires completed by the 15 participants in the study. Overall, 27% of the participants had received dementia care training and 53% had received training in diabetes care, while 20% had received both dementia and diabetes care training.

Table 1.

Participant demographic data

phc.2024.e1819_0001_tb1.jpg

Focus group interviews

Following framework analysis of the interview data, two overarching themes and associated subthemes were identified:

  • Self-management tasks: medical management; role management; and emotional management.

  • Self-management skills: problem solving, decision-making, resource use, formation of a patient-provider partnership, action planning and self-tailoring.

These themes and subthemes helped to inform the research team’s consideration of the data and were discussed to achieve consensus. However, it was agreed by the researchers that a different set of four themes better reflected the data in this study; for example, there were clusters of data that were more clearly represented through different themes. Therefore, it was agreed to present the results using the four themes shown in Figure 1.

Figure 1.

Four themes reflecting the data in the study

phc.2024.e1819_0001.jpg

Whose responsibility is it?

Someone with diabetes can experience a great deal of self-management and self-care. However, carers, families and nurses find providing support challenging when patients also have dementia, especially if they are on an insulin regimen. Maintaining an appropriate healthy diet can be difficult as the person’s memory deteriorates, and failure to maintain the diet may lead to hyperglycaemia or hypoglycaemia when complicated by insulin adjustment.

‘As the dementia progresses, the person forgets that they have eaten and it’s hard to control what they are eating, and then you are trying to fix their insulin limits based upon what they have eaten.’ (Participant four, focus group two)

Most participants said it was difficult to balance food with insulin therapy, especially when there were no carers involved and particularly at night, because few services provide support out of hours. Families may not be able to commit long-term to the regimen and carers may find it stressful as the conditions progress, leading to the question: ‘Whose responsibility is it?’

‘Probably if it was out of hours, it would be the rapid response team or probably the out-of-hours GP but there is no in-between. Especially with our situation [service operates seven days a week, 9am-5pm].’ (Participant one, focus group one)

Community nurses and diabetes specialist nurses – the pivot point

The participants discussed their professional responsibilities and how they worked closely with each other within or across their services. Their comments showed that partnership and collaboration were essential in providing care to people with dementia and diabetes so it would be safe for them to live at home:

‘We were quite reluctant for someone with dementia to leave them on their own, but because of our busy caseload work we have to use our professional judgement and we work very closely with the diabetic nurse specialists. It’s a lot of pressure and responsibility on us as district nurses because we feel that we have to make that judgement.’ (Participant one, focus group one)

The same participant also identified the importance of working with family members:

‘The daughter wasn’t able to be there to administer the insulin in the morning but then the diabetes nurse specialist changed the regimen to give the insulin at lunchtime when the daughter could conveniently give it to him.’ (Participant one, focus group one)

The diabetes specialist nurse participants commented that other healthcare professionals often came to them for guidance, rather than contacting GPs and community pharmacists. They also said families and carers were not always aware of who they should contact or how to do so.

The community nurse participants noted that the diabetes specialist nurses were very helpful, recognised risks and liaised with their patients’ social workers. Participants also identified that patients placed considerable importance on peer support but would also benefit from support from carers, although it was unclear who would supply such support.

Some participants related how patients in rural areas experienced challenges because of social isolation, with people located far from their family’s support and nurses having to travel further between calls.

Education to manage comorbidities

Participants emphasised the need for further education and training – community nurses and diabetes specialist nurses are specialists in their own fields, but the skill sets required for dementia and diabetes are different. They also identified the need to support families and carers with emotional care and education about each condition.

The participants discussed different types of training, concluding that training for professionals, families and carers needed to be practical, for example teaching clinical skills such as communication.

Participants were busy at work and their caseloads meant they could not take long periods out of their day. They therefore preferred short bursts of training on virtual platforms such as Zoom to capture a wider audience and use time more efficiently. One participant related how nurses and carers could be educated in both dementia and diabetes specialties by using simulations, such as the Dementia Tour Bus (a virtual experience designed to replicate the daily challenges faced by those living with dementia through virtual reality and sensory enhancements) (Slater et al 2021):

‘The Dementia Tour Bus – it was amazing. I am still talking about it and that was many years ago. I still refer to it on a daily basis. I think everybody should do that and put themselves in that position. It was really good.’ (Participant four, focus group two).

Participants identified possible solutions to address challenges in their clinical practice and in working with other healthcare professionals. It was suggested by some participants that double clinic sessions combining dementia and diabetes care, as well as telehealth, could be used to merge management of these comorbidities. It was suggested by one participant that closer interprofessional working might help to maintain and improve the health and well-being of patients:

‘Perhaps working even more closely with the dementia nurses might be a good starting point.’ (Participant one, focus group three)

Participants also discussed the development of the community and district nursing service, Neighbourhood Nursing (available in Northern Ireland 24 hours per day and seven days a week and with a focus on population health management and person-centred care) (Public Health Agency 2020). It was felt by participants that such steps could foster a collaborative team approach that would empower staff, enable patient self-management and promote independence.

Interprofessional communication

Communication is vital in enabling a patient to be discharged from hospital. Participants commented that some discharges were managed well while others were not. Furthermore, there was no consistency in how information was provided on patients’ stages of dementia. One participant said it was frustrating when GPs did not look at the diabetes pathway, because the information was already there. Another participant discussed the systems for managing and discharging people with diabetes in hospitals:

‘Sometimes, a patient can go into hospital who is managing their own insulin, but that capacity or skill is taken off them because the hospital routine/regimen doesn’t allow them to administer their own insulin and sometimes it is very difficult to restart when they come home.’ (Participant one, focus group one)

At the time of the study, the Department of Health in Northern Ireland was planning the introduction in November 2023 of Encompass, an integrated electronic care record that provides real-time, up to date information to all those involved in caring for patients in the health service in Northern Ireland (Department of Health 2023). Some participants commented that they expected the use of Encompass to overcome some of the challenges of interprofessional communication and address the limitations of different clinical specialties working in silos.

Discussion

This study explored how community nurses from one NHS trust and diabetes specialist nurses in five NHS trusts in Northern Ireland perceived the management of diabetes and dementia. This is an under-researched aspect of care and to the best of the authors’ knowledge this is the only study on this subject since Fox et al (2013).

Bunn et al (2017a) recognised the importance of individualising care, individuals’ preferences and quality of life. Alzheimer’s Disease International (2019) emphasised the need to adjust treatment appropriately when someone has a co-morbid medical condition. Families and carers experience challenges managing both conditions simultaneously because people with dementia and diabetes lose the ability to make decisions; these challenges include overseeing diet, monitoring blood glucose levels and administering medicines (Feil et al 2011).

The management of diabetes can be challenging for anyone, but it can be particularly difficult for people living with dementia, so families and carers must be offered support (Bunn et al 2017b). Lack of support for families and caregivers results in an adverse effect on their own emotional, spiritual, financial and physical well-being; this is related to their dual roles of providing care and support while fulfilling their employment or other family responsibilities (Dickson et al 2022).

Families, carers and patients rely on the support of healthcare services. The participants in this study acknowledged family and carers’ need for support, but it was not explicit who should provide it – support for carers is largely left to the private and charity sectors. The responses and themes in this study mostly focused on the importance of specialties working together, communication, ongoing education and training, providing support mechanisms, and overcoming difficulties in administering insulin and managing diet. Healthcare professionals working in partnership have an important role in supporting people with diabetes and dementia, their families and carers; they can share their knowledge and expertise, enabling them to be better able to make decisions relating to care (Blaum et al 2017).

This study’s participants suggested that training in diabetes and dementia as comorbidities should be integrated rather than provided as separate standalone courses. Such educational resources are rare despite Fox et al (2013) and Fox and Kilvert (2014) recommending them almost a decade ago.

Hicks et al (2018) provided guidance on the practical management of dementia and diabetes, including a competency framework to indicate what might be expected of healthcare professionals working at different levels – for example, unregistered practitioners, competent nurses and service managers. Hopkins et al (2016) also provided an overview of home-based strategies for the management of adults with diabetes and cognitive issues, such as recommendations to guide medicines management.

Courses to deliver such insights and guidance would also be welcomed. However, consideration needs to be given regarding the best ways to deliver such modules and updates. Possible options include innovative methods such as virtual reality training and online and blended learning activities to make it easier for nurses to attend during working hours. Robertshaw and Cross (2019) demonstrated the value of education as a foundation for integrated care following the development of an open-access online course called Bridging the Dementia Divide. Integrated care seeks to improve experiences and outcomes by delivering joined-up care to address the limitations of divided services.

The management of patients with comorbidities currently tends to take place across different specialties, but Rayman et al (2022) stressed the importance of taking comorbidities into account when managing patients – this would be especially true for those with diabetes and dementia. For example, there are multidisciplinary team clinics that provide specialist management of diabetes in pregnancy and renal care (Bain et al 2021). The success of these interventions suggests a clinic combining diabetes care and dementia care could bridge the gap between these comorbidities; this would also reduce pressure on and the duplication of services in hospital and community teams between primary and secondary care.

New IT systems such as Encompass should also support nurses in providing effective care to patients across specialties. Similarly, the BMJ Best Practice app’s comorbidities manager is an electronic clinical decision support system that ‘enables healthcare professionals to add a patient’s comorbidities to an existing management plan and get a tailored plan instantly’ (Rayman et al 2022).

Strengths and limitations

This study had several strengths. COPE’s (2022) guidelines on the publication of ethical practice were followed. Lorig and Holman’s (2003) framework was used to guide the researchers’ thinking during the early stages of the thematic analysis when categorising data; this ensured that a broad perspective of self-management was considered, even though the final agreed themes were altered. Using two researchers in the thematic analysis – one experienced in qualitative methods, the other an early career researcher – also promoted the study’s credibility (Noble and Smith 2015).

The study also had limitations. Only nurses were recruited to the study, which would have benefited from the wider perspective of other healthcare professions, including dietitians and doctors. The research team wanted to involve dietitians but challenges in obtaining governance approval from all five health and social care trusts was beyond its capacity to negotiate in the study’s time frame.

The absence of other healthcare professions was also a reflection of the fact that data collection was curtailed by post-COVID 19 fatigue, as well as staff availability and clinical workload. The COVID-19 restrictions that were then in place also meant there was no option available other than to conduct interviews remotely. However, conducting the interviews online rather than in person may have meant some non-verbal communication was missed.

The study would have also benefited from the perceptions of family members, carers and patients with both dementia and diabetes, and further research could capture these perceptions.

Conclusion

The complexity of managing the care of those with diabetes and dementia should not be underestimated. Healthcare professionals experience challenges when managing these co-morbid conditions, particularly in administering insulin. Partnership working with the patient, carers and family is essential across community and hospital settings, as is inter-professional communication and closer partnership working between community and specialist teams to bridge the two specialties. This might be achieved through the introduction of digital technology to promote single records for people with dementia and diabetes, which all of the healthcare professionals involved could share.

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