Stakeholder perspectives of care for people living with dementia moving from hospital to care facilities in the community: a systematic review

People living with dementia are frequent users of hospital services [1], with bed occupancy rates as high as 25% at any one time [2]. The most common reasons for admission are injuries sustained from accidents and falls, urinary tract and respiratory infections and exacerbations of other chronic health problems [3]. For over a decade there has been considerable attention paid to hospital discharge processes, with particular emphasis on seeking to avoid unnecessary admissions and reduce delays in discharge, in order to alleviate pressure in the health system [4]. Yet people living with dementia continue to experience delayed hospital discharges and when discharged, feel inadequately prepared; therefore it is not surprising hospital readmissions are common [2].

Internationally, the transition between hospitals and care homes has been highlighted as a concern; with several studies noting care at this transition requires improvement [5‐8]. In the UK, over two-thirds of care home residents are reported to be living with dementia [9]. Although information is limited about the use of hospitals by care home residents, Quality Watch, a UK major research programme, published a report following their analysis of hospital admission rates. Their findings imply that care home residents experienced 40–50% more emergency admissions than the rest of the population over the age of 75 years [10].

It is widely reported that transitions in care for older people lead to error, breaches of patient safety, rehospitalisation and mortality [11‐13]. As a result, older people require additional resources in order to transfer safely from hospital in order to avoid these post-discharge adverse events [13, 14]. The components of care that are particularly found to be lacking during transfers to care homes for older people are patient and family engagement in planning for the transfer [5, 6]; timely prepared transfers [7]; follow up care [8]; and communication about health and medication between settings [6]. These can all lead to frequent hospital readmissions [15]. These studies were not particularly focused on the experiences of people living with dementia.

Internationally, different terminology is used to refer to the care provided when a person transfers out of hospital back to the community. Improving this care has received most attention in the US and Australia. The term ‘transitional care’ appears to have emerged in the US in the 1980’s [16]. It refers to a broad range of actions including proactive, collaborative planning, service identification, and follow-up activities delivered to ensure continuity of healthcare to improve patient outcomes when people move between levels or locations of care, most notably from the hospital to the community [17, 18]. The Australian government announced in 2004 the development of the ‘Transition care program’. This is a time limited initiative which enables older people with lower level support and care needs, to receive care in residential or community settings, to gain independence and confidence either to return home, or make decisions about moving into a more appropriate supported accommodation [19]. The concept of ‘transitional care’ is relatively new in the UK, where there appears to be a much narrower focus on discharge processes and planning. There is now recognition that discharge planning processes are time-limited by the length of hospital stay, from admission to the day of discharge [20] and are only one element of transitional care.

The bulk of transitional care research taking place in North America, Australia and Europe has been conducted with older people being discharged to their own homes, with more recent work including a focus on people living with dementia [21‐23]. Where the transition between hospital and care home has been studied [5‐8], people living with dementia are often not included. Despite the policy emphasis on person-centred care, we know relatively little about the experiences and outcomes of people directly affected - people living with dementia and their family carers, nor their health and social care professionals. A UK report has indicated that coordinated transitional care practice is variable for people living with dementia, who move between care settings [24]. There is now a compelling argument to review the literature, in order to understand more about the experiences and outcomes of this transition for people living with dementia.

The aim of this review is to identify and synthesise evidence from the published literature on the experiences and outcomes of care from hospital to a care home (or similar care facility) from the perspectives of people living with dementia, their families and health and social care professionals.

This systematic review follows the guidance set out in the Centre for Reviews and Dissemination guidance for systematic reviews [25]. We registered the review with PROSPERO (International Prospective Register of Systematic Reviews) (PROSPERO 2017) [CRD42017082041].

After removal of duplicate papers the number of retrieved titles and abstracts screened was 2111, and of those, 28 potentially met the inclusion criteria and were subject to full text scrutiny. Nine papers met the inclusion criteria (PRISMA Fig. 1). The majority of studies meeting the inclusion criteria used qualitative methodology. This may be due to the nature of the review question; focusing on perspectives. Eight of the papers reported qualitative studies and the ninth was a pre/post intervention evaluation. The nine studies are summarised in Table 3 (Study settings and service descriptions) and Table 4 (Study methods and quality appraisal).

Studies were published between 2011 and 2017. Six of the papers were from Australia, [28‐31, 34, 36] with two reporting findings from the same study [28, 29], one was from the US [33], one from the UK [32] and one from Canada [35].

Just two of the studies elicited perspectives of people living with dementia [31, 32]. Both authors interviewed people living with dementia; N = 8 and N = 29. Emmett et al. [32] additionally carried out ethnographic observations over 111 days. Renehan et al. [36] analysed the care records of people living with dementia to determine whether the transition programme was helpful to those residents with behavioural and psychological symptoms. Using interviews and or focus groups, five studies included the perspective of family members [28‐30, 32, 35, 36] and four studies sought the views of health and social care professionals [32‐34, 36]. The combined number of participants from each category was 37 people living with dementia, 95 family members and 125 healthcare professionals. A range of health and social care professionals were represented these included: medical staff working in hospitals and the community [32, 34]; allied health care professionals [32, 34, 36]; social workers, health care assistants and a professional advocate [32]. The largest professional group were nurses including those working in hospitals [32, 34, 36], community care facilities [33, 36] and in GP practices [34]. Staff working in residential care homes were included in two studies [34, 36]. Renehan et al’s [36] study also included a range of staff from the transition care programme which included personal assistants, diversional therapists, team leaders and managers.

Study settings where transitional care took place were varied but the majority were short-term stay settings. The description and definitions of settings or services and the transition points where the authors elicited perspectives can be found in Table 3. The majority of studies focused on the care provided at transition, including discharge planning, how decisions are made, and the processes involved in the transfer.

In this review we created a narrative synthesis of stakeholders’ perspectives on transitional care of people living with dementia moving from hospital to a care facility. We established four inter related issues of importance to all stakeholders: adequate and inclusive preparation for transition; the need for good quality and timely communication; quality of care and family carer engagement. The studies in the review have noted there are shortfalls within these four categories, from the perspective of all stakeholders, which negatively impacts on all stakeholders involved. Findings also highlight facilitators for improved experience.

Although there are reviews that have focused on hospital discharge processes for people living with dementia [37‐39] this review examined additional transitional care activities with emphasis on moving to and being received by a care facility. Our findings are consistent with these reviews, in identifying some of the barriers to successful transition out of hospital for people living with dementia. Furthermore they identify specific issues relating to transferring to a care facility. It highlights a number of clinical practice issues resulting in unsatisfactory experiences, which could be improved upon.

Evidence from this review demonstrates many people living with dementia are often transferred to an alternative setting or care for either rehabilitation or to wait until a long-term care placement can be found. This has clinical implications as opinion is mixed whether multiple relocations for people with dementia causes further problems and should be minimised [40]. Whilst experiencing this alternative location in care or waiting for placement, the person with dementia and their family were often receiving care that did not meet the needs of individuals. Family members often act as advocates and provide ‘hands on’ care whilst the person is in hospital or a transition setting but conversely are not included in decision making about care. These findings are also reflected in a review of proxy decision-making by families of people living with dementia, which noted family carers were excluded from decisions made in hospital [27].

Health and social care professionals working with family members are fundamental in the care of people living with dementia. Successful transfers were reported when health and social care professionals were able to effectively engage with families. One study in this review demonstrated positive outcomes for people living with dementia when they were referred to a dementia specialist transition care program [36]. Increased family satisfaction was achieved when families had a named professional with whom they could liaise and communicate with both in the hospital and following transition into the facility. The practice of having a dedicated professional responsible for discharge planning is also supported in national UK guidance but is not specific about their role after transition [41].

Health and social care professionals also felt they did not have the skills to manage the complexities involved in caring for people with dementia. It is commonly recognised that when people with dementia are unwell or are in a place which is unfamiliar their response may be one of heightened anxiety and agitation [42], yet examples were given of health care professionals not being able to respond to this with non-pharmacological approaches and resorting to medication. This is not unusual, studies have reported that care of people living with dementia in hospital is often task orientated, delivered with little social engagement, sometimes with a lack of compassion and inappropriate responses to agitated behaviours such as the use of security services [43]. Given that this review has identified many people living with dementia often receive short-term care due to delays in arranging care to their final destination, it is important that staff in these areas have the skills to provide competent care.

System pressures resulting in sudden transfers were often a barrier to providing sufficient information between settings. Assumptions were made by hospital based healthcare professionals that facilities could respond quickly with little appreciation of the time required to prepare the right environment and arrange supplies of essential medication. Similar findings were noted in a Swedish study [44] that examined hospital and care home nurses’ views of older people transfers between settings. It found that transfers back to nursing homes were commonly done with limited planning, late in the day with little communication between nurses in either setting.

The emphasis on rapid turnover of patients is also not conducive to the patient with dementia. Kitwood’s theory of person centred dementia care [45] and the need to prevent behaviours such as outpacing and de-personalised care regimes suggests that such hurried transfers with little preparation of the person can significantly undermine a person’s well-being. System pressures also place staff under considerable stress. Findings of this review echo those in an English study by Connolly et al. [46], who reported practitioners were conflicted by competing internal and external pressures, which undermined their professionalism, caused frustration, and resulted in de-personalisation of care.

These findings have noted that how discharge activities are implemented can have unintended consequences for the care the person receives at the care facility. There is a sense in the literature that systems and processes between settings can be adversarial. An appreciation of perspectives of both ends of the pathway, and a focus on working together may help to facilitate better transitional care experiences.

The findings point to this key transition for people living with dementia being an under-researched area fraught with clinical care concerns. Despite the policy focus on person-centred care few studies seek the perspective of people living with dementia and their families. Yet we found that diverse stakeholders share common concerns about care during this transition including the need for: adequate preparation for transfer; effective communication between settings and stakeholders, quality care whilst their long term care needs are arranged and family engagement throughout. We identified areas of best practice which can help to guide care. There is a compelling need for further research in order to improve the experiences of the transition from hospital to care facilities for people living with dementia, their families and health care professionals.