- Research article
- Open access
- Published:
What works for whom in the management of diabetes in people living with dementia: a realist review
BMC Medicine volume 15, Article number: 141 (2017)
Abstract
Background
Dementia and diabetes mellitus are common long-term conditions and co-exist in a large number of older people. People living with dementia (PLWD) may be less able to manage their diabetes, putting them at increased risk of complications such as hypoglycaemia. The aim of this review was to identify key mechanisms within different interventions that are likely to improve diabetes outcomes in PLWD.
Methods
This is a realist review involving scoping of the literature and stakeholder interviews to develop theoretical explanations of how interventions might work, systematic searches of the evidence to test and develop the theories and their validation with a purposive sample of stakeholders. Twenty-six stakeholders — user/patient representatives, dementia care providers, clinicians specialising in diabetes or dementia and researchers — took part in interviews, and 24 participated in a consensus conference.
Results
We included 89 papers. Ten focused on PLWD and diabetes, and the remainder related to people with either dementia, diabetes or other long-term conditions. We identified six context-mechanism-outcome configurations which provide an explanatory account of how interventions might work to improve the management of diabetes in PLWD. This includes embedding positive attitudes towards PLWD, person-centred approaches to care planning, developing skills to provide tailored and flexible care, regular contact, family engagement and usability of assistive devices. An overarching contingency emerged concerning the synergy between an intervention strategy, the dementia trajectory and social and environmental factors, especially family involvement.
Conclusions
Evidence highlighted the need for personalised care, continuity and family-centred approaches, although there was limited evidence that this happens routinely. This review suggests there is a need for a flexible service model that prioritises quality of life, independence and patient and carer priorities. Future research on the management of diabetes in older people with complex health needs, including those with dementia, needs to look at how organisational structures and workforce development can be better aligned to their needs.
Trial registration
PROSPERO, CRD42015020625. Registered on 18 May 2015.
Background
Rates of diabetes in people living with dementia (PLWD) are between 13% and 20% [1]. Worldwide there are an estimated 35.6 million PLWD. By 2050 this number will rise to more than 115 million [2]. Although there are differences in the physical and cognitive effects of the different types of dementias, all are progressive, involve increasing physical and mental deterioration and lead to a person with dementia becoming increasingly dependent. In PLWD the likelihood of diabetes-related complications, such as hypoglycaemic episodes, cardiovascular conditions and amputations may be increased [3, 4]. This happens because dementia has an impact on an individual’s ability to administer medication, regulate eating habits and recognise and treat hypoglycaemia [5,6,7]. Furthermore, there appears to be a reciprocal relationship between hypoglycaemia, dementia and frailty [8, 9]. The impact on health and social care economies and on patients and their families is considerable [10].
The delivery of health and social care for this group is complex and challenging [11]. Despite this, there is currently no systematic approach to the management of diabetes and dementia [12]. In the UK there is a gap in provision of services in mental health trusts for diabetes care and similarly a gap in acute hospital trusts for dementia care [12]. Guidance on the management of diabetes in PLWD outlines a number of recommendations, including better case finding of both conditions, better training for staff, adequate support for family carers and care that is tailored to the need of the individual [12, 13]. However, currently there is little research evaluating interventions to improve the management of diabetes in PLWD; many diabetes-related studies specifically exclude PLWD.
There is a need to consider what kind of interventions are required for the effective management of diabetes in PLWD, including how interventions work, for whom and in what contexts. Interventions designed to improve the management of diabetes in PLWD are likely to be multicomponent, specific to different stages of the dementia trajectory and dependent on the behaviours and choices of those delivering and receiving the care. Realist synthesis is a systematic, theory-driven approach that aims to make explicit the mechanism(s) of how and why complex interventions work (or not) in particular settings or contexts [14,15,16]. Realist synthesis takes account of a broad and eclectic evidence base, including experiential and clinical knowledge. The aim of this review was to identify programme mechanisms to improve the management of diabetes in PLWD and to identify areas needing further research.
Methods
Rationale for using realist approach
Realist review is a theory-driven interpretive approach to evidence synthesis that endeavours to unpack the ‘black box’ of how complex interventions work [14, 15, 17]. The purpose of this review was to develop an explanatory account or programme theory about ‘what works’ in the management of diabetes in PLWD, and in what contexts. Explanatory accounts comprise configurations of context (the background conditions in which interventions are delivered and in which mechanisms are triggered), mechanism (the responses or changes that are brought about through a programme within a particular context) and outcomes. Definitions of key realist terminology used in the review are provided in Box 1. These context-mechanism-outcome (CMO) configurations are developed iteratively through data collection, theorising and stakeholder engagement. This account follows the Realist And Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) publication standards for realist syntheses [14]. A fuller version of the methods is published elsewhere [18]. In the protocol we specified that we would include people living in the community, a care home or other long-term setting. However, in the scoping phase the inclusion criteria were refined to exclude PLWD in care homes because there were felt to be significant differences between the environments. The change was agreed upon with the Project Advisory Group.
Phase 1: defining the scope of the realist review — concept mining and theory development
To develop our initial programme theories we scoped published and grey literature (see Table 1) and interviewed 19 content experts. This was followed by a workshop where the project team began to map and prioritise the identified theory. Content experts included clinicians with a special interest in either diabetes or dementia; providers of care in primary or secondary care; user representatives, including recipients of care, family carers and relevant diabetes or dementia charities; and academics and those involved in developing education and guidance for older people with diabetes. Interviews were conducted face to face or via telephone, using an interview schedule guided by realist principles [19]; they were audio recorded and transcribed. Ethical approval was obtained from the University of Hertfordshire Health and Human Sciences Ethics Committee with delegated authority (CHSK/SF/UH/00106).
Next we developed a series of explanatory accounts containing ‘If-Then’ statements [20]. ‘If-Then’ statements are the identification of an intervention/activity linked to outcome(s), and they contain references to contexts and mechanisms (though these may not be very explicit at this stage). The ‘If-Then’ statements helped to focus the process of considering ideas and assumptions about how interventions work and testing them against the evidence. Initially we generated 20 ‘If-Then’ statements which, after further discussion, were synthesised to three. We then mapped ideas about ‘good’ diabetes care against barriers for PLWD, potential interventions and emerging theory. This became Theory Area (TA) 1 — clinically based approach. Additional theory areas around supportive partnerships (TA 2) and co-production (TA 3) were developed to reflect other areas identified in the scoping.
Phase 2: retrieval, review and synthesis
In Phase 2 we undertook systematic evidence searches to test and develop the theories identified in Phase 1. The main inclusion criteria were:
-
PLWD of any type or severity and type 1 or 2 diabetes, resident in the community
-
Any intervention designed to promote the management of diabetes in PLWD and the prevention of potential adverse effects associated with poorly managed diabetes
-
Studies that provide evidence on barriers and facilitators to the implementation and uptake of interventions designed to improve the physical health of PLWD
-
Studies that offer opportunities for transferable learning such as those that evaluate interventions for PLWD and other clinical conditions, or those that look at the way services are delivered and implemented for PLWD
-
Published and unpublished studies of any design, policy documents and guidelines.
The purpose of the searches was not to identify an exhaustive set of studies but rather to reach conceptual saturation [21]. Search terms were devised in conjunction with an information scientist and were chosen to reflect the theory areas identified in Phase 1. The searches were split into three main categories: A — Theory areas + dementia AND diabetes, B — Theory areas + dementia, C — Theory areas + diabetes. More details of the searches are given in Table 1.
Selection and appraisal of documents
Search results were downloaded into bibliographic software. Records and full-text papers were screened for inclusion by two of four reviewers (FB, PRJ, BR, DT). The reviewers then met to discuss decisions and resolve any disagreements. Decisions on inclusion made at different points in time were recorded in an Excel spreadsheet. Consistent with a realist synthesis approach, items were assessed for inclusion on the basis of whether they were considered ‘good enough and relevant enough’ [22, 23]. This was an iterative process that involved discussion between team members. ‘Good enough’ was based on the quality of evidence, for example whether it was of a sufficient standard for the type of research, and whether the claims made were considered to be trustworthy. ‘Relevance’ related to whether the authors provided sufficient descriptive detail and/or theoretical discussion to contribute to the theories generated in Phase 1.
Data extraction and synthesis
Data were extracted into a piloted ACCESS database; the included fields reflected the theory areas identified in Phase 1. Data were extracted by one reviewer, with 50% checked by a second. Data in a realist sense are not just restricted to the study results or outcomes measured but also include author explanations and discussions, which can provide a rich source of ‘data’ that makes explicit how an intervention was thought to work (or not). The ACCESS database was used to identify prominent recurrent patterns of contexts and outcomes (demi-regularities) in the data and the possible means (mechanisms) by which they occurred [24]. This deliberative and iterative process enabled iteration from plausible hypotheses to the uncovering of potential context-mechanism-outcome (CMO) configurations. The data were discussed with the entire project team at a second workshop.
Phases 3 and 4: test and refine programme theories (validation) and develop actionable recommendations
To develop a final review narrative we reviewed the hypotheses through consultation with the Project Advisory Group and with stakeholders. Stakeholder consultation was done via telephone interviews (n = 7) and group discussions at a consensus conference (n = 24). Participants at the conference were purposively sampled to ensure that all the stakeholder groups in Phase 1 were represented. Following the consensus conference the CMOs were revised and rechecked against data from the literature and stakeholder transcripts.
Results
We included 89 papers [8, 11, 12, 25,26,27,28,29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64,65,66,67,68,69,70,71,72,73,74,75,76,77,78,79,80,81,82,83,84,85,86,87,88,89,90,91,92,93,94,95,96,97,98,99,100,101,102,103,104,105,106,107,108,109,110]. These included 79 research papers (22 reviews, 57 primary research papers) and 10 guidelines or discussion pieces. The 57 primary research papers reported 51 studies. Ten papers focused on people living with dementia and diabetes (PLWDD), and the rest were concerned with diabetes (n = 32), dementia (n = 31) or other groups, such as those with chronic illness or frailty. An overview of the selection process is provided in Fig. 1 and a summary of included studies in Table 2. The majority of the studies we included were from the UK (n = 33), North America (n = 23) or mainland Europe (n = 11).
Our review resulted in six CMO configurations which provide an explanatory account of how interventions might work to improve the management of diabetes in PLWD (see Table 3). Supporting evidence from stakeholder interviews is provided in Table 4.
CMO 1: embedding positive attitudes towards PLWD
PLWD face problems accessing healthcare. This includes a failure to design services around their needs, poor communication between services, a lack of training on dementia care for health and social care staff, and a reliance on others (such as family carers) to recognise a need for services and stigma [11].
Involving PLWD in self-management
Ten studies looked at self-management (SM) interventions for PLWD or cognitive impairment (CI) [37, 41, 70, 73, 74, 80, 81, 88, 100, 104]. The evidence is limited, as most focus on people living with mild or early stage dementia, are mostly qualitative or small pilot or feasibility studies, do not report measurable health outcomes and usually focus on people with a partner [111]. Furthermore, only one study, a controlled evaluation of personalised education sessions, included people with both dementia and diabetes [37]. This US-based study found a significant increase in self-efficacy but no difference in glycated haemoglobin (HbA1c) levels at a 6 months follow-up.
Despite this, these studies offer evidence and transferrable learning for the development of SM support for PLWDD. For example, confidence and a sense of control appeared to be important mechanisms that could lead to increased engagement in SM activities for PLWD [98]. Several studies suggested that supporting service users and carers to become more functional, independent and resilient was preferable to a purely clinical focus on managing or treating medical symptoms [42, 54, 106]. Work on enablement suggests that there is a link between independence, functional ability and self-care behaviour, and feelings of confidence or self-efficacy in PLWD and their family carers [39, 41, 98]. Working with families is clearly key. However, studies highlight the need to ensure that the voice of the PLWD is heard [81]. Qualitative studies on SM support for PLWD found that information provision may be aimed at carers, leaving PLWD feeling powerless [81], and that PLWD can find support inappropriate or stifling [73, 100]. An overview of context, mechanisms and outcomes for promoting SM in PLWD is shown in Fig. 2.
CMO 2: person-centred approaches to care planning
PLWDD have two chronic life-limiting conditions with different trajectories. Dementia generally has a progressive or stepwise pattern of progression, whereas diabetes may have a more constant course with longer periods in which to adapt [112], but the trajectory of each is likely to have an impact on the other. Delivering appropriate and sustainable care for PLWDD from early stage to advanced dementia is a difficult clinical enterprise that requires a change from a curative, biomedical strategy to a more person-centred approach where patient priorities are at the forefront [102, 113].
A recognition of patient motivators and goals and negotiation of a mutually agreed management plan could improve adherence to SM regimens [26, 58, 65, 84, 93]. For example, maintaining independence and engagement with day-to-day activities was a clear priority for participants in all groups (e.g. PLWDD, older people with diabetes, PLWD) [32, 37, 60, 78, 79, 100]. Several studies suggested, however, that there was ‘goal divergence’ between patients, carers and HCPs, particularly when patient care was complicated by the presence of multiple conditions [32, 58, 102].
Whilst continuity of care in long-term conditions such as diabetes is known to be important, it assumes an added significance for the PLWDD and their family. A long-term trusting relationship is a key element to achieving a person-centred approach to care that prioritises and values the patient’s subjective health experiences [11, 26, 27, 31, 32, 43, 64, 65, 84, 93, 110]. People with diabetes and CI are likely to need long-term connection and maintenance programmes in order to maintain positive impacts on glycaemic control [37].
Patient-centred communication and collaboration between healthcare professionals (HCPs) and patients/families appear to be key to achieving individualised care [32, 58, 89, 102]. Several studies looked at the use of tools, such as decision aids, for involving older people with diabetes in shared decision making [35, 75, 89]. These did not show an impact on glycaemic control, but the tools were thought to facilitate and provide structure for patient-centred practice, co-construction of decision making and patient engagement in their diabetes management. However, whilst such tools may be useful, PLWDD are likely to need interventions which involve more frequent contact and include repetition and reinforcement. Decision making is likely to be complicated by issues around consent, concordance and the appropriateness of treatment.
CMO 3: developing skills to provide tailored and flexible care
The literature highlights the importance of assessing the specific self-care barriers faced by older people with diabetes, and tailoring advice and support to individual needs and goals for diabetes SM [82, 94]. Clinical guidelines on diabetes recommend that target HbA1c levels be relaxed for older people who are frail or have comorbidities and/or dementia [12, 114,115,116]. For example, a Best Clinical Practice statement recommends that, for PLWD, clinicians should aim to achieve a fasting blood glucose 6–9 mmol/L, range (HbA1c 53–64 mmol/mol; 7–8%) [12]. Despite this, many older people with diabetes are potentially overtreated [8]. This could happen partly because these targets do not ‘fit’ with current performance measures [117] (such as Quality and Outcomes Framework (QOF) targets in primary care in the UK), or because HCPs do not always have the skills needed to provide flexible individualised care for people with diabetes and/or dementia [11]. Moreover, because SM support does not fit with a biomedically focused ethos, it is not embedded in the day-to-day work of primary care [60, 66,67,68, 85, 97].
A case study involving the use of continuous glucose monitoring to measure hypoglycaemia in older adults with diabetes found that simply relaxing HbA1c goals may not be adequate to protect frail older adults against hypoglycaemia. The authors concluded that there is a need for treatment regimens that better match patients’ self-care abilities [83]. However, research suggests that many HCPs do not take into account the abilities of patients and their family carers to cope with prescribed treatment [32, 82].
CMO 4: regular planned contact
Planned, regular contact between HCPs and the PLWD carers is needed in order for HCPs to anticipate transitions and help PLWDD and their family carers to manage changes in function and SM capabilities [110]. This is particularly important for PLWD where the dementia may progress in an uneven pattern of decline [12, 36, 50] and where the transition from autonomy to delegation or to caregiver-led management may be particularly difficult [11, 26, 84]. In a trial focused on improving diabetes management in older people, the authors found that older adults were reluctant to make changes to medication between clinic visits. However, regular phone contact from a diabetes educator encouraged people to adjust insulin dosage, leading to better glycaemic control [82].
The studies in this review describe a range of interventions delivered by a variety of HCPs: most commonly general practitioners (GPs), nurses, occupational therapists, psychologists and — in US studies — Certified Diabetes Educators (CDEs). Regardless of who is delivering the intervention, studies consistently highlight the importance of continuity and the quality of the patient-clinician relationship [11, 37, 41, 46, 57, 82, 98]. Whilst the quality of the relationship is important, PLWDD need to be managed by practitioners with appropriate expertise. Dementia as a comorbidity may challenge a diabetes specialist, and a dementia specialist may lack appropriate diabetes knowledge. Ensuring that all professionals have expertise in diabetes and dementia would be difficult, and a collaborative practice is likely to be necessary for people with both conditions, particularly for more complex cases such as people who are insulin-dependent or those with advanced dementia [91]. The way in which specialists involved in the long-term care of patients with dementia and diabetes or other long-term conditions liaise with each other was recognised as an issue, but was outside the remit of this review.
CMO 5: family engagement
There is a great deal of evidence that family members often provide significant SM support for people with long-term conditions such as diabetes [26, 64, 90], particularly when dementia affects a person’s ability to undertake self-care-related tasks [110]. Family members are also often proactive in facilitating continuity, negotiating access to services for their relatives [11, 110] and providing support or motivation for their relatives’ SM activities [25]. Despite this, family carers often feel undervalued or excluded from decision making, and they may be ill prepared to take on responsibility for SM [11, 26, 46, 47]. Problematic medication management practices may persist despite the involvement of a family carer [26, 71]. The situation is often further complicated by the fact that carers may only take on SM-related tasks once there is a crisis or a failure to adhere to medication [47].
Managing the needs of a family member with diabetes and dementia raises particular anxieties for carers because of the risk of hypoglycaemia and other adverse events associated with diabetes. Ensuring that their family member eats appropriately and that this is coordinated with their medication is a source of great concern for carers, particularly if they are not co-located [11]. Inflexible service provision, such as district nurses being able to go in only at certain times of the day or social services carers not having the authorisation to oversee medication for people with diabetes, is an additional concern [11, 110].
Although we found no studies evaluating structured interventions to provide education and support to family carers of PLWD, qualitative studies looking at SM for PLWD [81] and for people with diabetes (not dementia) [64] argue that it is important to involve carers in the development of SM skills alongside the person they care for. Interventions aimed at supporting PLWD to manage their diabetes should take into account the education and support needs of family carers as well as the PLWD [11, 26, 46]; this support needs to include the issues arising from both conditions and the way dementia is likely to affect diabetes management [11].
CMO 6: usability of assistive technology
For the purpose of this CMO, assistive technology (AT) is defined as ‘any product or service designed to enable independence for disabled and older people’ [118]. We included 17 papers (five of which were systematic reviews) in this section. Two relate to PLWDD [11, 37], seven relate to the use of AT in PLWD [34, 48, 49, 51, 63, 69, 95], four concern the use of AT in older people [56, 87, 101, 103] and four involve people with diabetes (not dementia) [25, 59, 76, 77]. Current evidence suggests that AT may facilitate communication and access to support and information for carers, but that it has little impact on independence, safety or security for PLWD. There are also issues with the performance of the technology and acceptability to users [48].
AT such as biometric monitoring, medicine management reminders and sensors and alarms to track movement is seen as one way of maintaining autonomy for PLWD [103]. The use of simple technology such as dosette boxes can also be used to maintain independence, although these tools are likely to become less successful as the dementia progresses [110]. AT provision often involves the direct purchase of ‘off-the-shelf’ technology which is adapted by family carers [49, 56]. A review of AT for PLWD found that family carers were most likely to use technology not specific to caring or to dementia, such as tablets, baby monitors, smart phones or light sensors [69].
Family carers played a significant role in supporting the use of AT [48, 49, 76, 77, 87, 101, 110]. They helped to embed AT, reduce patient anxiety [49] and increase motivation and participation [25]. However, a feasibility study of diabetes self-care support suggests that family ties are complex and that family involvement in SM is not always helpful [77]. There is evidence that PLWD wanted to and could contribute to the design of AT, and commentators argue that this makes it more likely to ‘fit’ with the needs of the PLWD [95]. However, even when they are involved in the design of AT, PLWD are likely to need on-going support and family involvement [101]. Technology in itself is unlikely to solve the problem of independent living for older people [56], particularly for those living with dementia [69, 119]. Technology appears to be most effective when it augments or involves face-to-face contact [34, 37, 48, 59].
Summary of CMOs
The six CMO configurations are summarised in Fig. 3. The CMOs are grounded in evidence from the literature and stakeholder perspectives. Although designed to be specific to PLWD, the CMOs are also likely to be transferable to other groups who experience problems with diabetes management, for example older people with complex health and social care needs. The CMOs are not mutually exclusive, and we would suggest that what is most important is how the different elements of each interact. The CMO configurations require changes in individual or organisational behaviour or understanding, and in many cases both. For example, CMO 3 — which focuses on skills development — requires the development of skills at an individual level but also organisational changes which legitimise the importance of those skills and allow the time for them to be acquired and practiced. The outcomes we specified in the protocol for this synthesis included a number of clinical outcomes, such as the prevention of hypoglycaemia, the management of cardiovascular risk factors and the identification and management of long-term complications such as neuropathy. However, the outcomes that emerged from the evidence available are primarily experiential rather than clinical, focusing on the need to trigger mechanisms such as trust, confidence and empowerment.
Discussion
Summary of findings
An overarching contingency emerges from the data that relates to the convergence or alignment between an intervention strategy, disease progression and social and environmental factors, in particular the involvement of family carers. In the early stages, where the PLWDD can still retain some functionality to make decisions about their diabetes management, ‘personalisation’ and ‘relationship’ building are key components of care that involve the PLWDD, their family carer and the HCPs. This requires a re-orientation of staff capabilities towards prioritising PLWDD and family perspectives over biomedical directives. As the dementia trajectory progresses and independent functioning becomes more problematic for the PLWDD, affecting SM behaviours, then there may be a need to move towards greater ‘monitoring’ by the HCP and family carer. This risk-management perspective may use technology as a way of maintaining confidence in diabetes SM, but we found no evidence to suggest that it can compensate for the loss of cognitive ability. The relationship and personalisation perspectives are essential throughout the trajectory, but they are adapted to anticipate the changing needs of PLWDD and their family carers.
Implications of the findings
This review highlights the way that emotional support and practical assistance provided by families is key for PLWDD. Despite this, carers often feel undervalued or ill prepared to take on caring responsibilities. A survey of carers of older people with diabetes found that 40% of family carers had never received any information on diabetes from professionals [120]. Many of the support needs of family carers identified could equally apply to PLWD and other comorbidities. However, there are clearly some concerns that are particularly pertinent to family members of PLWDD. Whilst many carers may find medication management stressful, this task is often exacerbated for family carers of PLWDD owing to their concerns about the prevention of adverse events associated with either hypoglycaemia or hyperglycaemia [11, 46, 110]. Family carers are likely to need education combined with on-going support from a specialist in diabetes [12]. They may also have needs related to the dementia, such as how to manage behaviours that challenge.
There is little evidence on which to base any recommendations for practice for PLWDD who have very limited networks of support from family or friends. Research suggests that PLWD who live alone have an increased risk for unmet social, environmental, psychological and medical needs [121] [11]. Our CMO on person-centred approaches to care planning identified the generation of trust between the HCP and the PLWD as necessary in order to improve care planning and SM. Building trusting relationships with HCPs may be particularly important for those who live alone, as they do not have a family member to facilitate access and continuity of care [11] and are likely to be more dependent on HCPs to perform this role [122]. However, PLWD who lived alone found it difficult to trust others and admit to their mistakes or challenges, because they feared being placed in long-term care [123].
Person-centred care is a consistent feature of our programme theory. It is identified as a trigger for mechanisms such as trust, empowerment and a belief that SM is achievable and worthwhile for people with dementia and diabetes. These ideas are not new, as guidance for both conditions recommends person-centred care [61, 124, 125]. What this synthesis does is begin to identify some of the key components of person-centred diabetes care for people with dementia and the organisational and practice changes this might entail. For example, the instigation of individualised (possibly simplified) diabetes regimens requires that the PLWDD sees an appropriate specialist/s or that generalists such as GPs and practice nurses have appropriate knowledge about how to tailor diabetes care. It presupposes interprofessional approaches to clinical decisions and regular review of care. It also relies on HCPs knowing that such actions are legitimised, for example through less focus on biomedical targets and time allocation to establish an understanding of the individual’s story and priorities. This is inevitably linked to continuity and having a practitioner who both understands the dementia trajectory and can also respond as care needs alter [11].
A UK study found that PLWD had an average of 4.6 chronic diseases in addition to their dementia [126], meaning that diabetes may be only one of several healthcare concerns for older people with dementia. In addition, diabetes and frailty are closely interrelated [127], and the relationships between hypoglycaemia, frailty and dementia appear to be reciprocal, with each condition potentially exacerbating the others [8]. Guidelines on diabetes care in older people and those with dementia emphasise the need to consider the significance of frailty and the need to avoid hypoglycaemia [12, 114]. Despite this, there is evidence that a substantial proportion of older adults are potentially overtreated [128]. Performance measures should incentivise appropriate de-intensification as well as intensification of medication regimens [8], and research is needed to consider whether care pathways for this group need to be specific to diabetes and dementia or whether a pathway for older adults with complex needs, such as frailty or multimorbidity, is more appropriate.
Strengths and limitations
The main limitation of this study was the lack of evidence relating specifically to the management of diabetes in PLWD. This lack of evidence is compounded by few insights into how the point at which the person develops dementia or diabetes affects treatment. However, in realist methodology the unit of analysis is the programme theory, or underpinning mechanism of action, rather than the intervention [129]; as such we were able to draw on a wider body of literature that provided opportunities for transferable learning. This enabled us to develop a theory-driven explanation in the form of six CMO configurations that can be used to guide future initiatives and interventions.
The outcomes in our CMOs are largely experiential rather than clinical. This reflects the evidence available. Outcomes such as increased engagement in SM are potential surrogates for better clinical management of diabetes, but this is not proven. The literature suggests that key goals for this group are maintaining independence and creating treatment regimens that ‘fit’ with the needs and abilities of the PLWD and family carer. However, literature in this area is scarce, and further work is needed to identify what it is that PLWDD and their family carers want from interventions [130].
Much of the evidence we included related to either PLWD or people with diabetes, rather than people with both conditions. Inevitably, the aims, focus and outcomes of these two sets of studies are very different. Moreover, because we drew on this larger literature, there were many more potentially relevant sources of information than we could possibly cover. However, the nature of realist synthesis means that there is not a finite set of relevant papers to be found. Rather the reviewer takes a more purposive approach to sampling [129], with the aim of reaching conceptual saturation rather than identifying an exhaustive set of studies [21].
Many of the conclusions in this review about diabetes care are not specific to people with dementia. For example, personalised approaches to medication choice, continuity of care and a focus on individual patient preferences are relevant to all age groups [131, 132]. The review shows, however, how a diagnosis of dementia creates extra and different needs from those experienced by people with diabetes but without dementia. People with dementia and diabetes are more likely to be dependent on support from unpaid carers, may have more trouble accessing diabetes-related healthcare [11] and are at greater risk of complications such as hypoglycaemic episodes. Future research should consider the impact of involving family carers in SM interventions for people with diabetes and dementia, look at ways to improve medication management and explore how professionals can recognise when a person is no longer able to self-manage and provide appropriate support.
Conclusions
The challenge for HCPs is how to accommodate quality of life, independence and patient and carer priorities with the minimum requirements of ‘good’ diabetic control. We recognise that perceptions of ‘good’ are situation-specific, differ for PLWDD and for family carers and will change over time. This review suggests that there is a need for a further work to establish a shared understanding of what needs to be in place to engage effectively with PLWD including those with diabetes and their supporters to establish how ‘good support’ is operationalised and measured. Much of the research included in this review, particularly that specific to PLWDD, identifies deficiencies and problems with current systems. Whilst we have highlighted the need for personalised care, continuity and family-centred approaches, there is much evidence to suggest that this is not currently happening. Future research on the management of diabetes in older people with complex health needs, including those with dementia, needs to look at how organisational structures and workforce development can be better aligned to their needs. The role of family carers in managing healthcare conditions of PLWD and their contribution in facilitating continuity and access to care are indisputable [11]. It is important, therefore, that HCPs conceptualise the provision of care for PLWD and a comorbidity as a complex phenomenon that affects not just individuals but also dyads and families [90].
Abbreviations
- AT:
-
Assistive technology
- CMO:
-
Context-mechanism-outcome (configuration)
- HCP:
-
Healthcare professional
- PAG:
-
Project Advisory Group
- PLWD:
-
Person (people) living with dementia
- PLWDD:
-
Person (people) living with dementia and diabetes
- RMT:
-
Research Management Team
- SM:
-
Self-management
References
Bunn F, Burn AM, Goodman C, Rait G, Norton S, Robinson L, et al. Comorbidity and dementia: a scoping review of the literature. BMC Med. 2014;12:192.
Prince M, Jackson J. World Alzheimer report 2009. London: Alzheimer’s Disease International; 2009. Available: http://www.alz.co.uk/research/files/WorldAlzheimerReport.pdf. Accessed 18 Sept 2012.
Bloomfield HE, Greer N, Newman D, MacDonald R, Carlyle M, Fitzgerald P, et al. Predictors and consequences of severe hypoglycemia in adults with diabetes—a systematic review of the evidence. VA-ESP Proj. #09-009. 2012.
Punthakee Z, Miller ME, Launer LJ, Williamson JD, Lazar RM, Cukierman-Yaffee T, et al. Poor cognitive function and risk of severe hypoglycemia in type 2 diabetes: post hoc epidemiologic analysis of the ACCORD trial. Diabetes Care. 2012;35:787–93.
Feil DG, Zhu CW, Sultzer DL. The relationship between cognitive impairment and diabetes self-management in a population-based community sample of older adults with type 2 diabetes. J Behav Med. 2012;35:190–9.
Hewitt J, Smeeth L, Chaturvedi N, Bulpitt CJ, Fletcher AE. Self management and patient understanding of diabetes in the older person. Diabet Med. 2011;28:117–22.
Sinclair AJ, Girling AJ, Bayer AJ. Cognitive dysfunction in older subjects with diabetes mellitus: impact on diabetes self-management and use of care services. All Wales Research into Elderly (AWARE) Study. Diabetes Res Clin Pract. 2000;50:203–12.
Abdelhafiz AH, McNicholas E, Sinclair AJ. Hypoglycemia, frailty and dementia in older people with diabetes: reciprocal relations and clinical implications. J Diabetes Complications. 2016;30:1548–54.
Abdelhafiz AH, Rodríguez-Mañas L, Morley JE, Sinclair AJ. Hypoglycemia in older people — a less well recognized risk factor for frailty. Aging Dis. 2015;6:156–67.
IDOP. The hidden impact of diabetes in social care Report by the Institute of Diabetes for Older People and Novo Nordisk. Bedfordshire: Institute of Diabetes for Older People; 2013.
Bunn F, Burn A, Goodman C, Robinson L, Rait G, Norton S, et al. Comorbidity and dementia: a mixed method study on improving health care for people with dementia (CoDem). Heal Serv Deliv Res. 2016;4:1–156.
Sinclair AJ, Hillson R, Bayer AJ, National Expert Working G. Diabetes and dementia in older people: a Best Clinical Practice Statement by a multidisciplinary National Expert Working Group. Diabet Med. 2014;31:1024–31.
Morley JE, Sinclair A. Individualising treatment for older people with diabetes. Lancet. 2013;382:378–80. http://linkinghub.elsevier.com/retrieve/pii/S0140673613610557.
Wong G, Greenhalgh T, Westhorp G, Buckingham J, Pawson R. RAMESES publication standards: realist syntheses. BMC Med. 2013;11:21.
Pawson R, Greenhalgh T, Harvey G, Walshe KR. Realist synthesis: an introduction. ESRC Research Methods Programme, editor. Manchester: University of Manchester; 2004.
Rycroft-Malone J, McCormack B, Hutchinson AM, DeCorby K, Bucknall TK, Kent B, et al. Realist synthesis: illustrating the method for implementation research. Implement Sci. 2012;7:33.
Pawson R. Evidence-based policy: a realist perspective. London: Sage Publications; 2006.
Bunn F, Goodman C, Malone JR, Jones PR, Burton C, Rait G, et al. Managing diabetes in people with dementia: protocol for a realist review. Syst Rev. 2016;5:5.
Manzano A. The craft of interviewing in realist evaluation. Eval. 2016;22:342–60. http://dx.doi.org/10.1177/1356389016638615.
Pearson M, Brand SL, Quinn C, Shaw J, Maguire M, Michie S, et al. Using realist review to inform intervention development: methodological illustration and conceptual platform for collaborative care in offender mental health. Implement Sci. 2015;10(1):134.
Ford JA, Wong G, Jones AP, Steel N. Access to primary care for socioeconomically disadvantaged older people in rural areas: a realist review. BMJ Open. 2016;6(5):e010652.
Pawson R. Evidence-based policy: the promise of ‘Realist Synthesis’. Eval. 2002;8:340–58. http://evi.sagepub.com/cgi/doi/10.1177/135638902401462448. Accessed 2 May 2014.
Rycroft-Malone J, Burton C, Hall B, McCormack B, Nutley S, Seddon D, et al. Improving skills and care standards in the support workforce for older people: a realist review. BMJ Open. 2014;4:e005356.
Wong G, Pawson R, Owen L. Policy guidance on threats to legislative interventions in public health: a realist synthesis. BMC Public Health. 2011;11:222.
Aikens JE, Trivedi R, Aron DC, Piette JD. Integrating support persons into diabetes telemonitoring to improve self-management and medication adherence. J Gen Intern Med. 2015;30:319–26.
Alsaeed D, Jamieson E, Orlu Gul M, Smith FJ. Challenges to optimal medicines use in people living with dementia and their caregivers: a literature review. Int J Pharm. 2016;512:396–404.
Anderson RA, Bailey Jr DE, Wu B, Corazzini K, McConnell ES, Thygeson NM, et al. Adaptive leadership framework for chronic illness: framing a research agenda for transforming care delivery. ANS Adv Nurs Sci. 2015;38:83–95.
Bahar-Fuchs A, Clare L, Woods B. Cognitive training and cognitive rehabilitation for mild to moderate Alzheimer’s disease and vascular dementia (Review). Cochrane Database Syst Rev. 2013; Art No: CD003260. doi:10.1002/14651858.CD003260.pub2.
Bailey RA, Pfeifer M, Shillington AC, Harshaw Q, Funnell MM, VanWingen J, et al. Effect of a patient decision aid (PDA) for type 2 diabetes on knowledge, decisional self-efficacy, and decisional conflict. BMC Health Serv Res. 2015;16:10.
Baxter MA. The new NHS and diabetes care. Br J Diabetes Vasc Dis. 2014;14:87–94.
Bergdahl E, Benzein E, Ternestedt BM, Elmberger E, Andershed B. Co-creating possibilities for patients in palliative care to reach vital goals—a multiple case study of home-care nursing encounters. Nurs Inq. 2013;20:341–51.
Beverly EA, Wray LA, Chiu CJ, LaCoe CL. Older adults’ perceived challenges with health care providers treating their yype 2 diabetes and comorbid conditions. Clin Diabetes. 2014;32:12–7.
Boots LMM, De Vugt ME, Van Knippenberg RJM, Kempen GIJM, Verhey FRJ. A systematic review of Internet-based supportive interventions for caregivers of patients with dementia. Int J Geriatr Psychiatry. 2014;29:331–44.
Boots LM, de Vugt ME, Withagen HE, Kempen GI, Verhey FR. Development and initial evaluation of the Web-based self-management program “Partner in Balance” for family caregivers of people with early stage dementia: an exploratory mixed-methods study. JMIR Res Protoc. 2016;5:e33.
Branda ME, LeBlanc A, Shah ND, Tiedje K, Ruud K, Van Houten H, et al. Shared decision making for patients with type 2 diabetes: a randomized trial in primary care. BMC Health Serv Res. 2013;13:301.
Brown J, Carson A, Waugh A, Park D. Managing diabetes in people with dementia. Nurs Times. 2015;111:16–9.
Camp CJ, Fox K, Skrajner MJ, Antenucci V, Haberman J. Creating effective self-management for older adults with type 2 diabetes and cognitive impairment. Adv Aging Res. 2015;4:33–41.
Chrvala CA, Sherr D, Lipman RD. Diabetes self-management education for adults with type 2 diabetes mellitus: a systematic review of the effect on glycemic control. Patient Educ Couns. 2016;99:926–43.
Clare L, Bayer A, Burns A, Corbett A, Jones R, Knapp M, et al. Goal-oriented cognitive rehabilitation in early-stage dementia: study protocol for a multi-centre single-blind randomised controlled trial (GREAT). Trials. 2013;14:152.
Clare L, Linden DE, Woods RT, Whitaker R, Evans SJ, Parkinson CH, et al. Goal-oriented cognitive rehabilitation for people with early-stage Alzheimer disease: a single-blind randomized controlled trial of clinical efficacy. Am J Geriatr Psychiatry. 2010;18:928–39.
Davis KK, Mintzer M, Dennison Himmelfarb CR, Hayat MJ, Rotman S, Allen J. Targeted intervention improves knowledge but not self-care or readmissions in heart failure patients with mild cognitive impairment. Eur J Heart Fail. 2012;14:1041–9.
De Vriendt P, Peersman W, Florus A, Verbeke M, Van de Velde D. Improving health related quality of life and independence in community dwelling frail older adults through a client-centred and activity-oriented program. A pragmatic randomized controlled trial. J Nutr Heal Aging. 2015;20:35–40.
Dhedhi SA, Swinglehurst D, Russell J. “Timely” diagnosis of dementia: what does it mean? A narrative analysis of GPs’ accounts. BMJ Open. 2014;4:e004439.
Donald M, Dower J, Coll JR, Baker P, Mukandi B, Doi SA. Mental health issues decrease diabetes-specific quality of life independent of glycaemic control and complications: findings from Australia’s living with diabetes cohort study. Heal Qual Life Outcomes. 2013;11:170.
Dugmore O, Orrell M, Spector A. Qualitative studies of psychosocial interventions for dementia: a systematic review. Aging Ment Heal. 2015;19:955–67.
Feil DG, Lukman R, Simon B, Walston A, Vickrey B. Impact of dementia on caring for patients’ diabetes. Aging Ment Heal. 2011;15:894–903.
Feil DG, Pearman A, Victor T, Harwood D, Weinreb J, Kahle K, et al. The role of cognitive impairment and caregiver support in diabetes management of older outpatients. Int J Psychiatry Med. 2009;39:199–214.
Fleming R, Sum S. Empirical studies on the effectiveness of assistive technology in the care of people with dementia: a systematic review. J Assist Technol. 2014;8:14–34.
Gibson G, Dickinson C, Brittain K, Robinson L. The everyday use of assistive technology by people with dementia and their family carers: a qualitative study. BMC Geriatr. 2015;15:89.
Giebel CM, Sutcliffe C, Challis D. Activities of daily living and quality of life across different stages of dementia: a UK study. Aging Ment Health. 2015;19:63–71.
Gillespie A, Best C, O’Neill B. Cognitive function and assistive technology for cognition: a systematic review. J Int Neuropsychol Soc. 2012;18:1–19.
Goeman D, Conway S, Norman R, Morley J, Weerasuriya R, Osborne RH, Beauchamp A. Optimising health literacy and access of service provision to community dwelling older people with diabetes receiving home nursing support. J Diabetes Res. 2016;2016:2483263. http://dx.doi.org/10.1155/2016/2483263.
Graff MJL, Vernooij-Dassen MJM, Thijssen M, Dekker J, Hoefnagels WHL, OldeRikkert MGM. Effects of community occupational therapy on quality of life, mood, and health status in dementia patients and their caregivers: a randomized controlled trial. J Gerontol Med Sci. 2007;62A:1002–9.
Graff MJL, Vernooij-Dassen MJM, Thijssen M, Dekker J, Hoefnagels WHL, Rikkert MGMO. Community based occupational therapy for patients with dementia and their care givers: randomised controlled trial. BMJ. 2006;333:1196.
Graff MJ, Adang EM, Vernooij-Dassen MJ, Dekker J, Jonsson L, Thijssen M, et al. Community occupational therapy for older patients with dementia and their care givers: cost effectiveness study. BMJ. 2008;336:134–8.
Greenhalgh T, Wherton J, Sugarhood P, Hinder S, Procter R, Stones R. What matters to older people with assisted living needs? A phenomenological analysis of the use and non-use of telehealth and telecare. Soc Sci Med. 2013;93:86–94.
Hackel JM. “Patient-centered care” for complex patients with type 2 diabetes mellitus—analysis of two cases. Clin Med Insights Endocrinol Diabetes. 2013;6:47–61.
Heisler M, Vijan S, Anderson RM, Ubel PA, Bernstein SJ, Hofer TP. When do patients and their physicians agree on diabetes treatment goals and strategies, and what difference does it make? J Gen Intern Med. 2003;18:893–902.
Hsu WC, Hei K, Lau K, Ghiloni S, Le H, Gilroy S, et al. Utilization of a cloud-based diabetes management program for insulin initiation and titration enables collaborative decision making between healthcare. Diabetes Technol Ther. 2016;18:1–9.
Huang ES, Gorawara-Bha RCM. Self-reported goals of older patients with type 2 diabetes mellitus. J Am Geriatr Soc. 2005;53:306–11.
IDF. In: Sinclair A, Dunning T, Colagiuri S, editors. Managing older people with type 2 diabetes Global Guideline. Brussels: International Diabetes Federation; 2013. www.idf.org.
Iliffe S, Wilcock J, Haworth D. Delivering psychosocial interventions for people with dementia in primary care: jobs or skills? Dementia. 2006;5:327–38.
Jekel K, Damian M, Wattmo C, Hausner L, Bullock R, Connelly PJ, et al. Mild cognitive impairment and deficits in instrumental activities of daily living: a systematic review. Alzheimers Res Ther. 2015;7:17.
Jowsey T, Pearce-Brown C, Douglas KA, Yen L. What motivates Australian health service users with chronic illness to engage in self-management behaviour? Heal Expect. 2014;17:267–77.
Jowsey T, Dennis S, Yen L, Mofizul Islam M, Parkinson A, Dawda P. Time to manage: patient strategies for coping with an absence of care coordination and continuity. Sociol Health Illn. 2016;38:854–7.
Kennedy A, Bower P, Reeves D, Blakeman T, Bowen R, Chew-Graham C, et al. Implementation of self management support for long term conditions in routine primary care settings: cluster randomised controlled trial. BMJ. 2013;346:f2882.
Kennedy A, Rogers A, Bowen R, Lee V, Blakeman T, Gardner C, et al. Implementing, embedding and integrating self-management support tools for people with long-term conditions in primary care nursing: a qualitative study. Int J Nurs Stud. 2014;51:1103–13.
Kennedy A, Rogers A, Chew-Graham C, Blakeman T, Bowen R, Gardner C, et al. Implementation of a self-management support approach (WISE) across a health system: a process evaluation explaining what did and did not work for organisations, clinicians and patients. Implement Sci. 2014;9:129.
Knapp M, Barlow J, Comas-Herrera A, Damant J, Freddolino P, Hamblin K, et al. The case for investment in technology to manage the global costs of dementia. Policy Innov. Res Unit London. Leeds: National Health Service; 2015. p. 1–118.
Laakkonen ML, Kautiainen H, Holtta E, Savikko N, Tilvis RS, Strandberg TE, et al. Effects of self-management groups for people with dementia and their spouses — randomized controlled trial. J Am Geriatr Soc. 2016;64:752–60.
Lingler JH, Sereika SM, Amspaugh CM, Arida JA, Happ ME, Houze MP, et al. An intervention to maximize medication management by caregivers of persons with memory loss: intervention overview and two-month outcomes. Geriatr Nurs. 2016;37:186–91.
Markle-Reid M, Ploeg J, Fisher K, Reimer H, Kaasalainen S, Gafni A, et al. The Aging, Community and Health Research Unit—Community Partnership Program for older adults with type 2 diabetes and multiple chronic conditions: a feasibility study. Pilot Feasibility Stud. 2016;2:24.
Martin F, Turner A, Wallace LM, Choudhry K, Bradbury N. Perceived barriers to self-management for people with dementia in the early stages. Dementia. 2013;12:481–93.
Martin F, Turner A, Wallace LM, Stanley D, Jesuthasan J, Bradbury N. Qualitative evaluation of a self-management intervention for people in the early stage of dementia. Dement. 2015;14:418–35.
Mathers N, Ng CJ, Campbell MJ, Colwell B, Brown I, Bradley A. Clinical effectiveness of a patient decision aid to improve decision quality and glycaemic control in people with diabetes making treatment choices: a cluster randomised controlled trial (PANDAs) in general practice. BMJ Open. 2012;2:e001469. http://onlinelibrary.wiley.com/o/cochrane/clcentral/articles/503/CN-00913503/frame.html.
Mayberry LS, Kripalani S, Rothman RL, Osborn CY. Bridging the digital divide in diabetes: family support and implications for health literacy. Diabetes Technol Ther. 2011;13:1005–12.
Mayberry LS, Berg CA, Harper KJ, Osborn CY. The design, usability, and feasibility of a family-focused diabetes self-care support mHealth intervention for diverse, low-income adults with type 2 diabetes. J Diabetes Res. 2016;2016:7586385.
Metzelthin SF, Daniels R, van Rossum E, Cox K, Habets H, de Witte LP, et al. A nurse-led interdisciplinary primary care approach to prevent disability among community-dwelling frail older people: a large-scale process evaluation. Int J Nurs Stud. 2013;50:1184–96.
Metzelthin SF, van Rossum E, de Witte LP, Ambergen AW, Hobma SO, Sipers W, et al. Effectiveness of interdisciplinary primary care approach to reduce disability in community dwelling frail older people: cluster randomised controlled trial. BMJ. 2013;347:f5264.
Mountain G. Self-management for people with early dementia: an exploration of concepts and supporting evidence. Dementia. 2006;5:429–46.
Mountain GA, Craig CL. What should be in a self-management programme for people with early dementia? Aging Ment Health. 2012;16:576–83.
Munshi MN, Segal AR, Suhl E, Ryan C, Sternthal A, Giusti J, et al. Assessment of barriers to improve diabetes management in older adults: a randomized controlled study. Diabetes Care. 2013;36:543–9.
Munshi MN, Segal AR, Suhl E, Staum E, Desrochers L, Sternthal A, et al. Frequent hypoglycemia among elderly patients with poor glycemic control. Arch Intern Med. 2011;171:362–4.
Newton L, Dickinson C, Gibson G, Brittain K, Robinson L. Exploring the views of GPs, people with dementia and their carers on assistive technology: a qualitative study. BMJ Open. 2016;6:e011132.
Penn ML, Kennedy AP, Vassilev II, Chew-Graham CA, Protheroe J, Rogers A, et al. Modelling self-management pathways for people with diabetes in primary care. BMC Fam Pract. 2015;16:112.
Piette JD, Kerr EA. The impact of comorbid chronic conditions on diabetes care. Diabetes Care. 2006;29:725–31.
Procter R, Greenhalgh T, Wherton J, Sugarhood P, Rouncefield M, Hinder S. The day-to-day co-production of ageing in place. Comput Support Coop Work. 2014;23:245–67.
Quinn C, Toms G, Jones C, Brand A, Edwards RT, Sanders F, et al. A pilot randomized controlled trial of a self-management group intervention for people with early-stage dementia (The SMART study). Int Psychogeriatrics. 2016;28:787–800.
Reinhardt Varming A, Møller Hansen U, Andrésdóttir G, Reventlov Husted R, Willaing I. Empowerment, motivation, and medical adherence (EMMA): the feasibility of a program for patient-centered consultations to support medication adherence and blood glucose control in adults with type 2 diabetes. Patient Prefer Adherence. 2015;9:1243–53.
Ryan P, Sawin K. The individual and family self-management theory: background and perspectives on context, process and outcomes. Nurs Outlook. 2010;57:217–25.
Sachar A. How important is mental health involvement in integrated diabetes care? The Inner North West London experience. London J Prim Care. 2012;5:63–7.
Schaller S, Marinova-Schmidt V, Setzer M, Kondylakis H, Griebel L, Sedlmayr M, et al. Usefulness of a tailored eHealth service for informal caregivers and professionals in the dementia treatment and care setting: the eHealthMonitor Dementia Portal. JMIR Res Protoc. 2016;5:e47.
Schulman-Green D, Jaser SS, Park C, Whittemore R. A metasynthesis of factors affecting self-management of chronic illness. J Adv Nurs. 2016;72:1469–89.
Sherifali D, Bai J-W, Kenny M, Warren R, Ali MU. Diabetes self-management programmes in older adults: a systematic review and meta-analysis. Diabet Med. 2015;32:1404–14.
Span M, Hettinga M, Vernooij-Dassen M, Eefsting J, Smits C. Involving people with dementia in the development of supportive IT applications: a systematic review. Ageing Res Rev. 2013;12:535–51.
Suh G-H, Ju Y-S, Yeon BK, Shah A. A longitudinal study of Alzheimer’s disease: rates of cognitive and functional decline. Int J Geriatr Psychiatry. 2004;19:817–24.
Sun X, Guyatt GH. Interventions to enhance self management support. BMJ. 2013;346:f3949.
Tan CCL, Cheng KKF, Wang W. Self-care management programme for older adults with diabetes: an integrative literature review. Int J Nurs Pract. 2015;21 Suppl 2:115–24.
Taylor SJC, Pinnock H, Epiphaniou E, Pearce G, Parke HL, Schwappach A, et al. A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS – Practical systematic RevIew of Self-Management Support for long-term conditions. Southampton (UK): Heal Serv Deliv. Res; 2014.
Toms GR, Quinn C, Anderson DE, Clare L. Help yourself: perspectives on self-management from people with dementia and their caregivers. Qual Health Res. 2014;25:87–98.
Wherton J, Sugarhood P, Procter R, Rouncefield M, Dewsbury G, Hinder S, et al. Designing assisted living technologies “in the wild”: preliminary experiences with cultural probe methodology. BMC Med Res Methodol. 2012;12:188.
Yardley S, Cottrell E, Rees E, Protheroe J. Modelling successful primary care for multimorbidity: a realist synthesis of successes and failures in concurrent learning and healthcare delivery. BMC Fam Pr. 2015;16:23.
Greenhalgh T, Procter R, Wherton J, Sugarhood P, Hinder S, Rouncefield M. What is quality in assisted living technology? The ARCHIE framework for effective telehealth and telecare services. BMC Med. 2015;13:91.
Quinn C, Toms G, Anderson D, Clare L. A review of self-management interventions for people with dementia and mild cognitive impairment. J Appl Gerontol. 2016;35:1154–88.
McBain H, Mulligan K, Haddad M, Flood C, Jones J, Simpson A. Self management interventions for type 2 diabetes in adult people with severe mental illness (Review). Cochrane Database Syst Rev. 2016;4:CD011361.
Goodwin N, Sonola L, Thiel V, Kodner D. Co-ordinated care for people with complex chronic conditions: key lessons and markers for success. London: The King’s Fund; 2013. http://www.kingsfund.org.uk/sites/files/kf/field/field_publication_file/co-ordinated-care-for-people-with-complex-chronic-conditions-kingsfund-oct13.pdf.
Care Quality Commission. My diabetes, my care. Newcastle-upon-Tyne: Care Quality Commission; 2016.
McBain H, Mulligan K, Lamontagne-Godwin F, Jones J, Haddad M, Flood C, et al. Implementation of recommended type 2 diabetes care for people with severe mental illness — a qualitative exploration with healthcare professionals. BMC Psychiatry. 2016;16:222.
Taylor B, Bircher J, Wilson C, Barr S. RCGP National Diabetes Audit Quality Improvement Programme Report. London: Royal College of General Practitioners; 2016.
Bunn F, Burn A, Robinson L, Poole M, Rait G, Brayne C, et al. Healthcare organisation and delivery for people with dementia and comorbidity: a qualitative study exploring the views of patients, carers and professionals. BMJ Open. 2017;7:e013067.
Mountain G. Self-management programme for people with dementia and their spouses demonstrates some benefits, but the model has limitations. Evid Based Nurs. 2016;20:26–8.
Rolland JS. Chronic illness and the life cycle: a conceptual framework. Fam Process. 1987;26:203–21.
Eaton S, Roberts S, Turner B. Delivering person centred care in long term conditions. BMJ. 2015;350:4. http://www.bmj.com/cgi/doi/10.1136/bmj.h181.
Sinclair AJ, Paolisso G, Castro M, Bourdel-Marchasson I, Gadsby R, Rodriguez Manas L. European Diabetes Working Party for Older People 2011 clinical guidelines for type 2 diabetes mellitus. Executive summary. Diabetes Metab. 2011;37 Suppl 3:S27–38.
NICE. Managing blood glucose in adults with type 2 diabetes. Manchester: National Institute for Health and Care Excellence; 2016. http://pathways.nice.org.uk/pathways/type-2-diabetes-in-adults.
American Diabetes Association. Older Adults. Diabetes Care. 2015;38:S67–9. http://care.diabetesjournals.org/cgi/doi/10.2337/dc15-S013.
Caverly TJ, Fagerlin A, Zikmund-Fisher BJ, Kirsh S, Kullgren JT, Prenovost K, et al. Appropriate prescribing for patients with diabetes at high risk for hypoglycemia: National Survey of Veterans Affairs Health Care Professionals. JAMA Intern Med. 2015;175:1–3.
Down K. M Mitchell, D Wardle. Assistive technology: standards for service provision. London: Foundation For Assistive Technology London; 2006.
Vijayaraghavan S, O’Shea T, Campbell-Richards D, Sudra R, Morris J, Byrne E, Greenhalgh T. DAWN: Diabetes Appointments via Webcam in Newham. Br J Diabetes. 2015;15(3):123–6.
Sinclair AJ, Armes DG, Randhawa G, Bayer AJ. Caring for older adults with diabetes mellitus: characteristics of carers and their prime roles and responsibilities. Diabet Med. 2010;27:1055–9.
Miranda-Castillo C, Woods B, Orrell M. People with dementia living alone: what are their needs and what kind of support are they receiving? Int Psychogeriatrics. 2010;22:607–17.
de Witt L, Ploeg J. Caring for older people living alone with dementia: healthcare professionals’ experiences. Dementia. 2016;15:221–38.
de Witt L, Ploeg J, Black M. Living alone with dementia: an interpretive phenomenological study with older women. J Adv Nurs. 2010;66:1698–707.
NICE. Type 1 diabetes in adults: diagnosis and management. Manchester: National Institute for Health and Care Excellence; 2015. nice.org.uk/guidance/ng17.
NICE. Dementia: supporting people with Dementia and their carers in health and social care. Manchester: National Institute for Health and Care Excellence; 2006. http://www.nice.org.uk/CG42. Accessed 1 Dec 2016.
Guthrie B, Payne K, Alderson P, McMurdo MET, Mercer SW. Adapting clinical guidelines to take account of multimorbidity. BMJ. 2012;345:e6341. http://www.bmj.com/cgi/doi/10.1136/bmj.e6341. Accessed 5 Oct 2012.
Chen LK, Chen YM, Lin MH, Peng LN, Hwang SJ. Care of elderly patients with diabetes mellitus: a focus on frailty. Ageing Res Rev. 2010;9 Suppl 1:S18–22.
Lipska K, Ross J, Miao Y, Shah N, Lee S, Steinman MA. Potential overtreatment of diabetes mellitus in older adults with tight glycemic control. JAMA Intern Med. 2015;175:356–62.
Pawson R, Greenhalgh T, Harvey G, Walshe K. Realist review—a new method of systematic review designed for complex policy interventions. J Heal Serv Res Policy. 2005;10 Suppl 1:21–34. http://dx.doi.org/10.1258/1355819054308530%0A.
Zarit SH, Femia EE, Kim K, Whitlatch CJ. The structure of risk factors and outcomes for family caregivers: implications for assessment and treatment. Aging Ment Health. 2010;14:220–31.
Powers MA, Bardsley J, Cypress M, Duker P, Funnell MM, Fischl AH, et al. Diabetes self-management education and support in type 2 diabetes. Diabetes Educ. 2017;43:40–53. http://journals.sagepub.com/doi/10.1177/0145721716689694.
American Diabetes Association. Standards of Medical care in diabetes — 2017. J Clin Appl Res Educ. 2017;40:1–142.
Acknowledgements
We would like to acknowledge the contribution and support of the Project Advisory Group: Professor Steve Iliffe (Chair), Mr Tim Beanland, Dr Simon Conroy, Professor Angus Forbes, Dr Charles Fox, Professor Yoon Loke, Dr Ana Manzano-Santaella, Dr Paul Millac, Mrs Diane Munday and Ms Debbie Stanisstreet.
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This work is supported by the National Institute for Health Research (NIHR) Health Technology Assessment (HTA), project reference 13/138/03. This report presents independent research commissioned by the NIHR. The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the National Health Service (NHS), the NIHR, the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC), the HTA programme or the Department of Health.
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FB wrote the protocol, led the study, was involved in all aspects of the review process and wrote the paper. CG was involved in the study design, participated in the synthesis process and helped to revise the paper. PRJ was involved in all aspects of the review process, participated in the synthesis process and critically reviewed the final paper. BR was involved in all aspects of the review process, participated in the synthesis process and critically reviewed the final paper. DT was involved in the review process and critically reviewed the final paper. AS was involved in study design and interpretation of the results and critically reviewed the paper. AB was involved in study design and interpretation of the results and critically reviewed the paper. GR was involved in study design and interpretation of the results and critically reviewed the paper. JRM was involved in study design and interpretation of the results and critically reviewed the paper. CB was involved in study design, participated in the synthesis process and critically reviewed the paper. FB confirms that the manuscript is an honest, accurate and transparent account of the study being reported, that no important aspects of the study have been omitted and that any discrepancies from the review as planned have been explained. All authors read and approved the final manuscript.
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Bunn, F., Goodman, C., Reece Jones, P. et al. What works for whom in the management of diabetes in people living with dementia: a realist review. BMC Med 15, 141 (2017). https://doi.org/10.1186/s12916-017-0909-2
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DOI: https://doi.org/10.1186/s12916-017-0909-2