Objectives People with dementia are more vulnerable to complications in urgent health situations due to older age, increased comorbidity, higher dependency on others and cognitive impairment. This review explored the factors associated with urgent care use in dementia and the experiences of people with dementia, informal carers and professionals.
Design Scoping review. The search strategy and data synthesis were informed by people with dementia and carers.
Data sources Searches of CINAHL, Embase, Medline, PsycINFO, PubMed were conducted alongside handsearches of relevant journals and the grey literature through 15 January 2019.
Eligibility criteria Empirical studies including all research designs, and other published literature exploring factors associated with urgent care use in prehospital and emergency room settings for people with dementia were included. Two authors independently screened studies for inclusion.
Data extraction and synthesis Data were extracted using charting techniques and findings were synthesised according to content and themes.
Results Of 2967 records identified, 54 studies were included in the review. Specific factors that influenced use of urgent care included: (1) common age-related conditions occurring alongside dementia, (2) dementia as a diagnosis increasing or decreasing urgent care use, (3) informal and professional carers, (4) patient characteristics such as older age or behavioural symptoms and (5) the presence or absence of community support services. Included studies reported three crucial components of urgent care situations: (1) knowledge of the patient and dementia as a condition, (2) inadequate non-emergency health and social care support and (3) informal carer education and stress.
Conclusions The scoping review highlighted a wider variety of sometimes competing factors that were associated with urgent care situations. Improved and increased community support for non-urgent situations, such as integrated care, caregiver education and dementia specialists, will both mitigate avoidable urgent care use and improve the experience of those in crisis.
- accident & emergency medicine
- social medicine
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Strengths and limitations of this study
The involvement of people with dementia and informal carers in the protocol design and throughout the review process ensured the research addressed the concerns of all key stakeholders.
The scoping review methodology allowed a broad research question and inclusion criteria while maintaining a systematic search and data extraction process.
The primary limitation was the exclusion of research reported in languages other than English.
Scoping review methodology does not include a formal quality appraisal process, which means the scientific quality of the studies has not been taken into account.
Over 90% of people with dementia have another health condition,1 with the average number of comorbid conditions of people with dementia aged over 65 double that of those without dementia.2 This necessitates higher use of healthcare services than people without dementia.3 People with dementia are an at-risk patient group when accessing healthcare services in urgent situations due to their cognitive frailty.4 They may also be vulnerable to important changes being made when unplanned, urgent care is required, such as introducing or increasing social care support, institutionalisation, prescribing, deprescribing and hospital admission.1 However, the impact of dementia on a patient’s communication can lead to less involvement in treatment.5 Evidence in non-urgent care shows that even when decision making appears shared, people with dementia are not always fully informed of the options and the interests of other stakeholders may take precedent.6 7 ‘Diagnostic overshadowing’ can also occur, where people may be receiving substandard care because dementia takes precedent above other conditions.8
Research demonstrates a complex picture when considering how people with dementia access urgent care. A quarter of UK hospital beds are made up with people with dementia over 65 and people with dementia stay in hospital for longer than people without.9 However, people with dementia are less likely to be taken to hospital after calling the emergency services.10 This may indicate that people with dementia are presenting straight to emergency rooms rather than going through ambulatory services.10 It also suggests that people with dementia may present through the ambulance service with lower-acuity issues that do not convert to needing hospital attendance.
A further complexity lies in the fact that there are often professional or informal carers involved in urgent care situations in dementia. Informal or professional carers often contact services on behalf of the person with dementia and thus must describe symptoms that are not their own, resulting in complex and inexact triage.11 12 Caregivers for those with dementia report a lack of flexibility in community and hospital services to treat dementia symptoms.13 There is evidence of informal carer frustration surrounding the lack of alternatives to hospitals and the lack of time in urgent care services to cater for those with complex needs.14
While avoidance of hospitalisation is considered increasingly important in dementia care, there is little research that specifically aims to explore what factors affect urgent care situations when patients have dementia or how different stakeholders experience urgent care.8 The care provided in urgent situations is broad, encompassing in-hours and out-of-hours primary care, telecare telephone advice services, as well as emergency and prehospital services.15 An overview of the literature is, therefore, integral to planning future research in this area. The aim of this scoping review of the literature is to examine: (1) the factors associated with urgent care use in dementia and (2) the experiences of people with dementia, informal carers and professionals in urgent care situations.
A scoping review methodology was chosen due to the broad, multifaceted nature of how people with dementia access urgent care. Scoping reviews enable description of the foci of available research, thus identifying any gaps in the literature.16 The Joanna Briggs Institute Methodology for Scoping Reviews was followed17; a protocol has been published on the lead author’s University website.
Patient and public involvement
People with dementia and informal carers of those with dementia informed protocol development, ensuring the relevance of the research question to all stakeholders.18 This was an iterative process through discussions with the study steering group (one person with dementia and five carers) and through written feedback from five Alzheimer’s Society Service User Review Panels. The initial focus of the review was urgent primary care but the group members felt that they would often bypass primary care in urgent situations, instead presenting to emergency services. In response to this stakeholder input, the research questions were revised to include all types of urgent care. The terms ‘doctor’, ‘receptionist’, ‘choice’ and ‘choose’ were also added to the search strategy. The study steering group of people with experience of dementia and two Alzheimer’s Society Living Well with Dementia groups (10 people with dementia) informed the data synthesis by highlighting what features of the coded data were most salient to their experiences. This feedback influenced the synthesis of the findings into the resulting themes.
What factors are associated with urgent care use in dementia?
What are the experiences of people with dementia, informal carers and professionals in urgent care situations?
Inclusion and exclusion criteria
Types of studies: Published and unpublished studies were included, with no date restrictions. Only studies published in the English language were included, due to a lack of resources for translation. All study designs, including evidence from qualitative, quantitative and mixed-methods research, were included, as well as theoretical papers and other documents, such as reports, websites, guidelines, leaflets and commentaries. Systematic reviews that met the inclusion criteria were searched and papers relevant to this review were extracted for screening.
Participants: Included studies clearly stated that they include people with dementia, informal carers of people with dementia and/or professional caregivers working with people with dementia. All types and stages of dementia were included, as well as all types of informal or professional carer. Studies exploring older populations or people in care homes where dementia was not specified were not included.
Concepts: Included studies explored urgent care when patients have dementia. Studies that solely reported numbers of people with dementia accessing urgent care as compared with larger cohorts, with no additional contextual findings regarding dementia, were excluded. Similarly, studies that focus on specifically on end-of-life care planning with only incidental discussion of ‘do-not-hospitalise’ orders were not included.
Context: Services accessed in urgent situations were defined as ‘non-routine’ care, primarily in prehospital settings: urgent primary care, telephone advice services and ambulance services. While studies examining accident and emergency department settings were included as an exploration of the interface between community and hospital care, studies that focused solely of the provision of emergency treatment of acutely life-threatening conditions within hospitals were excluded. Studies that reported hospitalisation as a result of urgent care decision making were included, but trials and reports of interventions where the primary outcome was avoiding hospitalisation were excluded. There is an ongoing systematic review of intervention studies aiming to avoid hospitalisation in dementia.19
The information sources and search terms are outlined in table 1 and box 1. Sources were searched from inception to 15th January 2019. Search terms were chosen through discussion with clinicians, people with dementia and informal carers, and an information specialist.
One exp Dementia/
(dementia* or alzheimer*).ti,ab,kf,hw.
1 or 2
Four exp Ambulatory Care/
((urgent or primary) adj (healthcare or care)).ti,ab,kf,hw.
Seven exp Emergency Medical Services/
(emergency or emergencies or hotline* or hot line* or telephone or telecare or “111” or “999” or weekend or hospital* or evening* or out of hours or urgent or night* or A&E or ambulance or ambulatory).ti,ab,kf,hw.
4 or 5 or 6 or 7 or 8
Ten exp Health Personnel/
(nurse* or nursing staff or doctor* or physician* or paramedic* or receptionist* or care home staff or care home staff or GP* or general practitioner*).ti,ab,kf,hw.
10 or 11
(decision* or choice* or choos* or response* or understand* or options or triag*).ti,ab,kf,hw.
(communicat* adj3 (patient* or carer*)).ti,ab,kf,hw.
13 or 14 or 15 or 16
3 and 9 and 12 and 17
3 and 9 and 12
The search results were downloaded into Endnote X9 and were initially screened for inclusion based on title and abstract, followed by full-text screening. Over a process of three meetings, papers were jointly screened by authors JD and PX, to ensure clarity in the inclusion criteria and to identify any disagreements. JD then independently screened the remaining studies, with PX double screening a further 20%. Where JD was uncertain over inclusion, studies were discussed as a study team to ensure no relevant materials were excluded.
Reference lists of included papers that were not empirical research (eg, reviews, editorials, guidelines) were searched for any relevant primary research to be included in the final review. Forward and backward citation searches of included papers were then undertaken. Keywords of included papers were then screened against the original search terms to ensure that they had all been included.
Following scoping review methodology, data were extracted by charting study findings, resulting in a descriptive summary of included studies. JD led on data extraction, with PX independently extracting data from 33% of the studies to check for accuracy.
Study results relevant to the research questions were coded line by line for content, setting and type of participants using NVivo V.12. The codes were grouped according to setting and type of participants to allow description of the studies. They were then regrouped according to content of the codes, using methods from thematic analysis, first creating categories of codes with similar content and then forming groups of categories according to similarities and differences. These were discussed with the patient and public involvement groups to ensure clarity and relevance. This allowed a thematic description of (1) factors associated with urgent care use in dementia and (2) stakeholder experiences of urgent care use in dementia.
Figure 1 contains a flow chart of the screening process. Database searches identified 3841 records, with a further 179 identified from other sources. After duplicates were removed, 2967 titles and abstracts were screened, 946 records were retained for full-text screening. Fifty-four studies were included in the scoping review.
Table 2 provides a summary of the included studies. Twenty-six (48%) of the studies were conducted in the USA, 10 (18.5%) in the UK, 5 (9.5%) in Canada, 3 in the Netherlands, 2 (1.6% each) in France and China, and the remaining 5 in Taiwan, Ireland, Republic of Korea, Australia and Italy. The studies were published between 1991 and 2019, with 57% (n=31) published in the last 5 years. Twenty-two (41%) of the studies followed a prospective study design. Twelve (22%) were qualitative studies, nine (17%) were retrospective, five (9%) were surveys, five (9%) were mixed methods and one followed a Delphi process. The majority of studies included people with all types of dementia or did not specify type of dementia. Four studies included only people with Alzheimer’s disease and one study specified inclusion of participants with Alzheimer’s disease, Vascular dementia and Parkinson’s dementia.
Factors associated with urgent care use in dementia
Forty-five studies reported factors that were associated with urgent care use in dementia. These are listed in table 3, illustrating a number of contradictory findings.
Common comorbidities alongside dementia
Table 4 provides a summary of conditions discussed in the included studies occurring alongside dementia. Comorbidities were mostly described as ‘age related’,20 rather than dementia related, but studies considered whether people with dementia were more likely to access urgent care for these conditions. Two studies reported people with dementia being more susceptible to hospitalisation for ‘ambulatory care sensitive’ conditions, conditions that could be treated outside of hospital, meaning hospital could have been avoided.21 22 Nine studies reported a statistically significant increase in urgent service use when people with dementia have other medical conditions.10 20 23–29 However, there was not a consensus; two studies that found no association between comorbidities and accessing urgent care.30 31
Diagnosis of dementia
Twelve studies compared hospitalisation or emergency department use in dementia with those without dementia. Studies were evenly split between whether having dementia increased20 32–34 or decreased10 23 27 32 urgent care use. Zhao et al found that people with dementia were more likely to be hospitalised overall than people without dementia, but they were less likely to be hospitalised for osteoarthritis or heart conditions.32 Two studies found no increase or decrease in hospital use for dementia compared with people without dementia.25 27
Role of informal and professional carers
Informal carers, in making decisions and providing support for people with dementia, were reported to prevent situations arising such that urgent care was needed.30 35–39 However, a relationship strain or abuse or neglect from informal carers could cause increased urgent care use, and informal carers were also reported to increase use when the person with dementia is closer to death.26 27 38 40 Cogen et al found that male carers increased urgent care use but there was no association with carer age or education level and urgent care use.40 The person with dementia living in a care facility was shown to increase access to urgent care,27 29 41 although Toscani et al found that while there were more urgent situations with people with dementia living in care homes, they were less likely to go to hospital.29 Cloutier et al also found a decrease in hospitalisation after people with dementia were admitted to residential care.42
Symptoms and characteristics of the person with dementia
Older age27 28 30 43 44 and the presence of behavioural symptoms20 24 38 39 45 were reported to increase urgent care use. While there were no studies that reported these factors as being associated with a decrease in urgent care use, there were four23 25 46 47 and two26 31 studies, respectively, that found no association. This was also the case with ethnicity; studies reported increased urgent care use for non-white compared with white people with dementia,48–50 while others reported no association.23 28 33 Similarly, higher dependency,20 24 26 38 42 higher level of cognitive impairment23 34 44 and lower levels of education23 24 were shown by some studies to be associated with increased urgent care use, while others showed no association.25 28 There was some association with gender and increased urgent care use, with males reported as more likely to be hospitalised or visit emergency departments27 28 50 and one study reporting females more likely to have hip fractures.41
There were some differences in reasons for urgent care use according to type of dementia, with Chang et al showing that people with vascular dementia had higher frequencies of falls and delirium, and Rosenwax et al reporting fewer visits to emergency departments for people with Alzheimer’s disease.27 47 Chang et al found no difference in recurrent hospitalisations between dementia type.47 Two studies found that a shorter duration of dementia diagnosis was specifically associated with emergency psychiatric care.28 51
Variation in service organisation and location
Advance care planning was cited as preventative for urgent care use, but identified as difficult to put in place.27 49 50 52–55 Adequate outpatient services, specifically care coordinators and support in the home, were also identified to prevent urgent care use.38 39 53 56 Accidents in the home were highlighted as key causes of crises and resulting access to urgent care, and technological support within the home was seen as a way to avoid this.21 38 39
Six studies reported associations between geographical locations and increased urgent care use, including different levels of urgent care use in different countries,44 57 more urgent care use in rural over urban areas27 41 49 and more urgent care use in northern over southern regions.26
Stakeholder experiences of urgent care use in dementia
Thirty-one studies considered stakeholder experiences in more detail. Stakeholders experienced various situations in urgent care: from hospitalisation decisions,35 37 54 to withholding treatment at the end of life,29 37 58 59 to prescribing antibiotics.57 58 60
Three factors were considered to play particularly important roles in how people with dementia access urgent care and how care is experienced.
Knowledge of dementia as a condition and individual patient back stories
Specialist and in-depth knowledge of both dementia as a condition, and each individual person with dementia, was a priority in 20 studies. People with dementia were commonly not involved in decision making.44 61 They were reported to be in less pain and more likely to be marked as less urgent than those without dementia.10 27 There was concern among carers that a dementia diagnosis led to exclusion from specialist care services that a diagnosis of cancer might not.42 45 General practitioners (GPs) were reported to find behavioural symptoms in care homes as the most challenging part of their job,45 with patients with dementia seen as a burden on time.53 62
A lack of understanding of dementia was identified as a trigger for crises for people with dementia across settings. Increased training in dementia was reported as important to prevent crises in care homes,38 45 63 but specific staff employed as dementia specialists were reported as having a particularly beneficial effect. These could be placed within care homes39 45 50 or based in outpatient, primary care settings with constant contact with care homes.38 45 53
Emergency department staff had specific challenges related to the time-pressured environment, where the focus was on the acute presenting problem rather than dementia.53 62 64 65 This could be compounded by the presence of delirium.64 Dementia could also make it harder for staff to identify the reason for visiting the emergency department, which lead to undertriaging and longer waiting times for patients.65 That some people with dementia were unable to describe their symptoms was a particular problem.59 62 65 For those in care homes, information exchange between informal carers, professionals and emergency services was seen as a pivotal factor to improve access to urgent care, and one which was often lacking.41 45 54 55 58 66
Inadequate health and social care support leads to accessing urgent care
Fourteen studies reported that outpatient care and home support were not sufficient for people with dementia. There were two sides to this issue. First, a lack of outpatient or community support would cause crises, with situations worsening for people with dementia and their caregivers until hospital admission is necessary.45 56 63 Second, informal carers find themselves in a challenging situation and have nowhere to go for support other than an emergency department, despite acknowledging that the situation may not be urgent.38 52 67 Once a crisis point had been reached, support services became available where they were not available before.67 This could be due to service organisation factors, for example, not being able to access a psychiatrist unless the person with dementia is admitted,45 or economic factors, with insufficient funds and staffing in outpatient services.52
Professional carers reported feeling frustrated by limitations on their ability to avoid emergency situations in dementia.55 There were not always the staff available to control extreme behavioural symptoms.45 Additionally, professional carers report resistance from informal carers to engage in end-of-life discussions, resulting in people with dementia being hospitalised or aggressively treated even in late stages of their condition.54
Influence of informal carers in accessing urgent care
The role of the informal carer was explored in detail in 12 studies. Caregiver burden, characterised by negative emotional state, strain and sleep disturbance, was seen as a crucial factor in why people with dementia end up accessing urgent care, particularly emergency departments and hospitals.39 53 56 62 Caregiver strain was found to be associated with a change in functioning of people with dementia prior to hospital admission.46 Sudden caregiver physical illness or limitations on providing care also lead to urgent situations arising for people with dementia.38 39 56 This results in a vicious circle, with stress and guilt causing further damage to caregiver well-being.56 Correspondingly, support for carers was critical for preventing urgent situations in dementia, with strategies to maintain self-care and access to respite, including emergency respite in the home, identified as paramount.38 39 56
Another challenge of informal caring was the need to identify symptoms or avoid situations that may lead to urgent care situations.56 Carers’ lack of knowledge about how to recognise and manage healthcare situations, and what the treatment options were, lead to increased urgent care use.53 Additionally, as the situation escalates, caregivers may be under pressure to make decisions quickly, leading to inappropriate care.56 Caregiver education and counselling was therefore reported to be key in reducing urgent care use and providing support for caregivers to manage changes in symptoms appropriately.38 39 This was seen as particularly important regarding end of life decision making in urgent situations, for example Mitchell et al found that carers who had been counselled about expected complications and prognosis in advanced dementia were less likely to choose burdensome interventions such as hospitalisation in the last 3 months of life.68
Barriers between informal carers and health and social care services was a particular challenge that lead to urgent care use. Lack of support meant that hospitalisation resulting in the person with dementia discharged to residential care was experienced as a relief for stressed carers, who had felt guilty about making this decision on their own.52 Carers reported finding it hard to speak to GPs and community services about potential crisis situations.53 There were also barriers identified by professionals, with reports from care facility and emergency department staff of carers directly contradicting instructions in advance care plans, ordering more burdensome interventions.35 59 69 Medical professionals were seen to take the lead in decision making in urgent care.29 37 Involvement of informal carers was reported to lead to more aggressive treatment, for example, carer awareness of infection episodes for people with dementia in care homes lead to increased hospital transfers.43 Informal carers were not always informed by care home staff or clinicians if their relative with dementia had an infection, with under half being told if the patient with dementia had been prescribed antibiotics.58
The existing research exploring urgent care in dementia reports complex care scenarios affected by comorbidities, characteristics associated with dementia as a condition such as memory loss and behavioural symptoms, informal and professional carers, and the quality of outpatient healthcare services. A lack of understanding of dementia and knowledge about the patient as an individual, inadequate community support, and competing demands of informal and professional carers can cause additional challenges to the person with dementia receiving appropriate care.
The strengths of this scoping review are the systematic nature of the search and data extraction process. The broad research question and inclusion criteria allowed a wide variety of studies to be included. The involvement of people with dementia and informal carers in the design of the study and throughout the review process strengthened the review in ensuring the research addressed the concerns of key stakeholders. The primary limitation was the inclusion of only English language research. Additionally, the included studies explored dementia as an overarching condition, and therefore, the different effects of different types of dementia were not examined. Scoping review methodology does not include a formal quality appraisal process, which means the scientific quality of the studies has not been taken into account.
Considering the nature of a scoping review and the broad research questions, it was unsurprising that the 54 included studies explored a broad spectrum of factors associated with urgent situations for people with dementia, and that there were some competing findings. Sociodemographic factors such as older age, gender, ethnicity, lower education and geographical location were shown by some studies to increase urgent care use, while other studies showed no association. However, the studies did not discuss whether these factors are dementia specific, and there is research showing similar patterns in other patient groups.70–72 Similarly, comorbidity increases acute care use in other chronic illnesses.73 The heterogeneity of dementia, both in terms of manifest symptoms and disease severity, adds to the challenge of unpicking the relationship between a dementia diagnosis and urgent care use. That very few of the studies differentiated between dementia type meant that this could not be unpicked in this review.
There are two key implications for policy-makers and clinicians arising from this review. However, both rely on an increase of support for people with dementia and their carers in the community. First, a large proportion of the included studies identified insufficient care and support, in a variety of areas, as a key cause for crises occurring, as well as the reason people with dementia are admitted to hospital unnecessarily. Economic causes, such as low staffing levels in care homes or lack of services, were partly to blame, which is also reflected in other literature.74 75 However, a lack of communication between existing services was also detrimental to appropriate care, which has also been identified in other studies of dementia services.4 There is much recent research highlighting the benefits of integrated care for people with dementia, especially regarding patient-specific information being easily shared across different services, both between health and social care services and between community and hospital based services.74 The use of dementia specialists has also been highlighted as key to higher quality care, which was also identified in the review.76 The results of this review add to this, with a specific focus on how integrated services can both prevent inappropriate urgent care use and improve experiences.
The second key implication is reflected in the different priorities of stakeholders, which were particularly prevalent when it came to end-of-life decisions that arise in urgent situations. Advance care planning was identified as crucial in preventing unnecessary hospitalisation in urgent situations, but can be a challenge to implement, as has been discussed in the wider end-of-life care literature.77 Timely planning on what to do in urgent situations is advised to avoid problems of decision-making capacity,78 but memory clinics and GPs have highlighted challenges of initiating these conversations when people are adjusting to living with their new diagnosis and capacity is not yet an issue.79 80 Education of caregivers about how dementia progresses and the situations that may arise at end of life was highlighted as key in this review, as it has been in others.78 However, this will again rely on more resources and support for people with dementia and their families prior to urgent care situations arising.
Future research in this area will benefit from inclusion of the perspectives of people with dementia, which were included in only 6 of the 54 studies.38 39 45 46 65 66 This may be due to the complex nature of urgent care situations, where time constraints make more dementia-appropriate recruitment methods81 challenging, and those in advanced dementia not being able to participate in interviews. Future research could adapt from more traditional methodologies to explore the experiences of people with dementia. For example, studies have successfully used ethnographic or observational techniques to capture how decisions are made in non-urgent care settings, and using similar methods in urgent care would be beneficial in providing guidance and training to professionals.6 82 The included studies are dominated by large cohort studies, providing descriptive data on how many people with dementia in different contexts and settings access different types of urgent care, and what characteristics are associated with this. A future review could provide a meta-analysis of the available cohort studies in this area, in order to provide a definitive list of factors that increase or prevent urgent care use.
Twitter @DrMimaDooley, @MatthewBooker
Contributors JD came up with the concept of the review, ran the patient and public involvement groups, lead on every stage of the review process and writing the article. RB and MB helped with protocol development and providing comments on the article. PX helped with protocol development, the screening and extraction process, and providing comments on the article.
Funding This project is funded by the National Institute for Health Research (NIHR) School for Primary Care Research (project reference 74370).
Disclaimer The views expressed are those of the author and not necessarily those of the NIHR or the Department of Health and Social Care.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement No data are available. N/A.
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