Art & science The acute dementia synthesis care of series: art and science 1 is lived by the nurse in the nursing act JOSEPHINE G PATERSON UNDERSTANDING THE NEEDS OF PEOPLE WITH DEMENTIA AND FAMILY CARERS In the first article of this series, Jennifer Bray and colleagues present three case studies that show what adjustments trusts are making to improve the hospital experience for patients, relatives and staff Correspondence j.bray@worc.ac.uk Jennifer Bray is research assistant Simon Evans is principal research fellow and head of research Both at University of Worcester Rachel Thompson is professional and practice development lead for Admiral Nursing, Dementia UK and member of the Nursing Older People editorial advisory board Mary Bruce is senior lecturer Christine Carter is senior lecturer Dawn Brooker is director of the Association for Dementia Studies Sarah Milosevic is former research assistant All at University of Worcester Helen Coleman is dementia project lead nurse, The Shrewsbury and Telford Hospital NHS Trust Wilf McSherry is professor in dignity of care for older people at Staffordshire University and Shrewsbury and Telford Hospital NHS Trust Date of submission March 9 2015 Date of acceptance May 13 2015 Abstract This is the first in a short series that presents case study examples of the positive work achieved by trusts who participated in the Royal College of Nursing s development programme to improve dementia care in acute hospitals. When a person with dementia is in hospital, poor understanding of individual needs and preferences can contribute to a lack of person-centred care. Similarly, the needs of family carers can often be overlooked and staff do not always appreciate these needs at such a stressful time. This article illustrates how three NHS trusts have addressed these issues. To help staff get to know patients with dementia, Salford Royal NHS POOR UNDERSTANDING of individual needs and preferences can affect the person-centred care received by people with dementia in hospital. Additionally, carers can be overlooked by staff at what is often a stressful time for them and may not be able to remain involved in looking after their loved ones. As part of their involvement in the Royal College of Nursing (RCN) development programme to improve dementia care in acute hospitals (Brooker et al 2014, Evans et al 2015), three NHS hospital trusts Salford Royal NHS Foundation Trust, The Shrewsbury and Telford Hospital NHS Trust and Royal Devon and Exeter NHS Foundation Trust undertook work to improve their understanding of the needs of people with Foundation Trust has implemented a patient passport. Similarly, The Shrewsbury and Telford Hospital NHS Trust has implemented a carer passport that overcomes the restrictions imposed by hospital visiting hours. Royal Devon and Exeter NHS Foundation Trust also focused on carers, holding a workshop to elicit feedback on what was important to them. This was a useful means of engaging with carers and helped staff to realise that even simple changes can have a significant effect. Keywords Acute hospitals, carer involvement, carer passport, dementia, development programme, patient passport dementia and family carers. Examples of this work are presented in the following case studies. Patient passport Admission to hospital can be a confusing and frightening experience for people with dementia, especially if the admission is unplanned. In addition, admission is usually a result of a physical illness or crisis rather than dementia (Natalwala et al 2008, Alzheimer s Society 2009), and often a patient s dementia can be overlooked or not acknowledged. Combined with the fact that dementia affects everyone differently, it is therefore not surprising that people with dementia can experience a lack of person-centred care in the hospital setting. 18 September 2015 Volume 27 Number 7 NURSING OLDER PEOPLE
Neil O Connor Dementia project lead nurse Helen Coleman with an example of a carers passport NURSING OLDER PEOPLE September 2015 Volume 27 Number 7 19
Art & science acute dementia careseries: 1 20 September 2015 Volume 27 Number 7 Similarly, the focus in acute general hospitals on addressing physical needs, maintaining routines and achieving targets can work against the delivery of person-centred care (Cowdell 2010, Dewing and Dijk 2014). As highlighted by the Alzheimer s Society (2009), each person with dementia is an individual with likes, dislikes, routines and needs that are unique to them. It is essential to get to know the person and then think about how their dementia is affecting them. This was reinforced by the RCN, who stated that knowing and respecting each person remains central to the relationship between patients and staff (Thompson and Heath 2013). Personal profiles, sometimes called patient passports, such as This is Me (Alzheimer s Society 2010), are increasingly being used in acute general hospitals and provide a short summary of a person s background, preferences and interests. This easily accessible tool can help staff develop a better understanding of the person as an individual. The RCN SPACE principles for the care of people with dementia in hospital settings recommended care plans which are person-centred and individualised with the routine gathering of personal life story information using an agreed template (Thompson and Heath 2013). Before participating in the RCN development programme, Salford Royal NHS Foundation Trust in the north west of England had implemented a passport for patients with learning disabilities, but not for those with dementia. This became one of the elements of dementia-related work that the trust decided to focus on during the RCN programme. Through their previous work the trust appreciated the benefits of using a patient passport, but realised that it was mainly medically focused. Consequently, when they were adapting the approach for patients with dementia they made it more person centred and easier to complete. Changing the focus of the passport was essential because the aim of using it was not to supplement medical notes but to give staff information to enable them to provide personalised care for each patient and value patients as individuals (Brooker 2007). For example, knowing about a patient s previous occupation could help staff to engage more with them or understand any particular behaviour, while being aware that a patient usually wears glasses or a hearing-aid can improve communication and minimise distress for the individual. Before the RCN programme, no patient with dementia had a patient passport. Introducing the passport was not straightforward but its use has increased over time. Initially the patient passport was new to staff rather than being part of their regular way of working and, combined with busy workloads, they were often forgotten or overlooked. This resulted in staff not making use of the information even for the few patients who had a passport. The dementia lead nurses and the team participating in the RCN programme then made a concerted effort to raise awareness among staff about the patient passport and encourage its use. Consequently, all patients with dementia were provided with a passport, although they did not always contain full or appropriate information. The intention was that carers could complete the passport with or on behalf of their relative, and if there were any problems or a patient did not have a carer then staff would assist them. However, staff sometimes had to be reminded of the purpose of the passport, as the tendency was to include information that was too medically focused. As highlighted by Manley and McCormack (2004), developing practice and adopting new ways of working depend on engaging staff and considering the culture and context in which they work. After further effort by the dementia lead nurses to inform staff teams and ensure they understood the benefits of making the patient passport part of their day-to-day practice, its use has increased. In addition to working closely with staff teams, three main activities helped the trust when introducing the patient passport: Carer engagement: to ensure the patient passport was fit for purpose and captured appropriate information a carer engagement meeting was used to gain feedback. It also helped to make carers more aware of the passport and has resulted in them reminding staff about the passport, especially when they think it would be beneficial to their relative s care. Engagement with care homes: the trust is able to provide local care homes with blank copies of the passport and encourage staff to complete them with residents before admission. Consequently, the passport travels with patients between care homes and hospital, resulting in a reduction in telephone calls by staff trying to verify details with the homes. Scanning passports: patient passports are scanned into the hospital computer system. This means that the information is still available to staff even if the paper copy of the passport is forgotten when a patient is admitted or readmitted. Although the introduction process has taken time and effort, the use of the patient passport for people with dementia has increased in the trust. Staff have NURSING OLDER PEOPLE
realised their importance and usefulness, and they have had a positive effect on carer engagement as well as the quality and personalisation of care that staff provide to individual patients. Carer s passport While patient passports and the use of This is Me documents (Alzheimer s Society 2010) for patients with dementia are becoming more common, carer involvement can often be neglected or individual preferences not acknowledged. As recognised by the RCN, carers are often happy to assist in the care of their loved ones but it is important to seek their advice on how they wish to be involved (Thompson and Heath 2013). Consequently, the RCN SPACE principles included partnership working with carers and involving carers in care planning (Thompson and Heath 2013). As part of their involvement in the RCN development programme, The Shrewsbury and Telford Hospital NHS Trust in the West Midlands carried out work on carer engagement, as this was an area they identified as a priority. They spoke to carers at support groups in the hospital and the local area indicated that carers thought staff did not talk to them about the specific needs of their relatives and did not offer them the opportunity to help with providing care and support. Some carers had also experienced mixed responses when trying to visit their relatives outside normal visiting hours. While some staff were flexible and happy to accommodate such requests, this was not consistent and in some cases resulted in friction and anxiety for carers and patients. To help address these issues the trust introduced a carer s passport, which provides a common framework for staff and carers to work towards and aims to: Value the contribution that carers make in caring for a person with dementia. Recognise that carers can make a positive difference to the experience of the person while they are in hospital. Problems faced by carers included institutional barriers such as limited visiting hours and protected mealtimes, which are designed to allow patients to eat their meals without disruption and enable staff to focus on providing assistance to those patients unable to eat independently (RCN 2013). Usual visiting sessions at The Shrewsbury and Telford Hospital NHS Trust include an afternoon and an evening, which are outside protected mealtimes and so do not encourage carers to come into the hospital to support their relative with eating. The carer s passport aims to improve flexibility around visiting by acting as an access card, which allows a named carer to visit their relative at any time. It is pre-signed by the director of nursing to ensure consistency of access whichever nursing staff are on duty. The passport is targeted at specific groups such as patients with dementia, where having a flexible approach to visiting practices is recommended. The regular presence of a carer is likely to have a positive effect on the patient and carer involvement in care provision can improve the quality of care for the individual with dementia (RCN 2011a, 2011b, Thompson and Heath 2013). The carer s passport is publicised through posters outside the ward area and encourages carers to approach staff and ask for one. While the passport captures no information about the carer or patient, the simple act of asking for one helps to initiate a discussion between the carer and the ward manager about how best to plan care. This in turn helps nursing staff to recognise the expert knowledge that carers have about their relatives, or indeed to recognise them as carers in the first place. The process is designed to improve engagement and conversation between carers and staff and enables nurses to ask carers whether or how they would like to be involved in supporting their relatives care during the hospital stay. This means that care can be planned to take a carer s preferences into account, as some may want to be involved while others may take the opportunity to have a physical break from caring. Although a formal evaluation of the effect of the carer passport has not yet been carried out by the trust, feedback has been positive. Benefits for carers It has been reported that carers particularly value being able to visit and stay with their relatives whenever needed, and appreciate having the opportunity to engage with nursing staff. For example, one carer stated that when her husband had been in hospital previously she had been unable to spend much time with him, but recently staff had let her come in and help with his care such as bathing and feeding. This made a significant difference to her and her husband s experiences, and helped to relieve some of her anxiety and apprehension during this period. Carers experiences in general are now more positive, with carers feeling that since the introduction of the passport interactions between carers and staff have improved. Carers think that they will be listened to rather than ignored or fobbed off, and their knowledge is valued and taken on board by staff. Carers have also suggested that the passport could include details of local carer support services and groups. NURSING OLDER PEOPLE September 2015 Volume 27 Number 7 21
Art & science acute dementia careseries: 1 Table 1 Outcomes from the carer workshop Issue raised by carers Some carers want to be more involved in their relative s care while they are in hospital Some carers find it difficult to obtain information about their relative on the telephone The high cost of parking when visiting their relative Hospital visiting times, which are two hours in the afternoon and two in the evening, are restrictive Benefits for staff According to staff the passport brings a range of benefits. For example, carers have, on occasion, helped to support patients who were agitated or distressed. They have also been able to provide advice and support with some aspects of individual care delivery such as bathing, feeding and dressing, which has helped patients, staff and carers. Consequently, staff feel that the passport has helped to develop and strengthen partnership working with carers. Despite initial concerns from staff about an increase in visitors and potential breaches in confidentiality after the introduction of more open and flexible visiting arrangements, these problems have not materialised. Indeed carers and families are generally mindful and sensitive that ward activity can vary and accept that they may occasionally be asked to leave the ward for a while. The introduction of the carer s passport by The Shrewsbury and Telford Hospital NHS Trust Solution proposed and implemented Staff now appreciate that carers can be involved in the day-to-day care of the patient (NHS Confederation 2010) and use a simple checklist to find out what aspects of the patient s care a carer would like to be involved with. This includes showering, washing, toileting, dressing, assisting with eating and drinking, wound dressing and administering medication. Carers are able to say if they would like to perform the task themselves, if they would like help from nursing staff or if they would prefer not to help with the care tasks. This information is captured in standard documentation for each patient and remains with that patient during their stay in hospital A password system has been implemented that enables staff to have greater confidence when they are speaking to the carer on the telephone and so helps them to share more information about the patient Carers can provide staff with their car registration number, which is passed on to parking staff to ensure they are aware that carers are entitled to park for free while visiting their relatives Cards have been created for carers to carry with them, which give them permission to visit their relatives as required. Carers have said that they find the card helpful and appreciate that it also gives them a 10% discount on food and drink at the hospital canteen illustrates that not all interventions aimed at improving quality of care for patients with dementia have to be complex to have an effect. Indeed, the trust has taken a relatively simple but positive step forward by making it easier for carers to visit their relatives and be involved in their care. Overall, staff have been positive about the carer s passport, but the initiative represents a shift in culture and practice which has taken time to achieve. Making all staff aware of the passport also took time and the benefits of carer input need to be reinforced for some staff, but there is ongoing communication to ensure that staff know about the scheme and use it effectively. Based on their experiences of introducing the carer s passport, the trust has provided some advice for other hospitals looking to undertake similar work: On launching the passport, ensure that there is widespread publicity and communication. Engage with front line clinical staff from the outset. Pilot the passport in a few main hospital areas to gain staff confidence and assurances. Use the passport to strengthen, underpin and complement other work that is taking place to improve care for patients with dementia. Ensure its use and benefits are reinforced in staff training and education. Carer workshop The RCN SPACE principles recognised the importance of partnership working with carers, in particular that carers should be involved in care planning. However, as noted previously, it is important to ask carers how they wish to be involved (Thompson and Heath 2013). Similarly, it is widely recognised that listening to patients and their carers and engaging with them in a meaningful way is key to treating patients with dignity and compassion (NHS Confederation 2010). As a tool to support carer involvement and engagement, the Triangle of Care (Hannan et al 2013) highlighted the importance of staff having an understanding of carers needs and having systems that support a partnership approach. The Royal Devon and Exeter NHS Foundation Trust recognised that involving carers was one of the main areas where they could make significant improvements as part of the RCN development programme. Previous work in the hospital concerned the role of carers when patients were admitted and included adding a section on carer involvement into the care plans of patients with confusion, delirium or dementia. As part of this work it was recognised that staff assumptions about what is important to 22 September 2015 Volume 27 Number 7 NURSING OLDER PEOPLE
carers can be wrong. It was therefore necessary to find out from carers what was important to them when their relatives were in hospital and what could be put in place to support them. A workshop was chosen to obtain feedback from carers, although it can be difficult to engage carers in activities as some people may not want to be labelled as carers. To maximise attendance, staff designed a set of user-friendly posters to be displayed around the hospital showing images of people in a caring role that carers could relate to such as assisting with feeding or brushing someone s hair. The posters avoided using the term carer but encouraged people to come forward if they undertook similar activities on a regular basis. At the workshop each carer was given an imaginary 5 note and asked how they would spend it to make changes that would directly benefit them. This proved to be enlightening for staff as it helped them understand what was important for carers. Staff listened to what the carers said and devised solutions to address the four main issues identified in the workshop (Table 1). As recognised by Thompson and Heath (2013), carers of people with dementia can experience high levels of anxiety, depression and stress as a result of caring and their needs often go unrecognised. Although some of these solutions are simple and straightforward, small changes can have a significant effect on carers and help to alleviate some of their anxiety and stress. As the carer workshop was a success, further ones are planned once the first round of changes has been implemented and embedded. Subsequent workshops will help to assess the changes and look at how any further improvements can be made. However, while the carer workshop was beneficial for all involved, it has been difficult to find different carers to participate in similar events. Conclusion Although the case studies show different work being carried out by the trusts, they illustrate that all three have benefited from their participation in the RCN development programme. It has helped to give the hospital teams new ideas or a focus for existing work, together with the momentum and motivation to see them through. The programme has also given staff the confidence to pursue their ideas and helped them to gain recognition and support from their wider staff teams and trusts in general. Peer review This article has been subject to double-blind review and has been checked using antiplagiarism software Author guidelines journals.rcni.com/r/ nop-author-guidelines Online archive For related information, visit our online archive and search using the keywords Conflict of interest None declared References Alzheimer s Society (2009) Counting the Cost: Caring for People with Dementia on Hospital Wards. Alzheimer s Society, London. Alzheimer s Society (2010) This is Me. www.alzheimers.org.uk/thisisme (Last accessed: June 30 2015.) Brooker D (2007) Person-Centred Dementia Care: Making Services Better. Jessica Kingsley, London. Brooker D, Milosevic S, Evans S et al (2014) RCN Development Programme: Transforming Dementia Care in Hospitals Evaluation Report. University of Worcester, Worcester. Cowdell F (2010) The care of older people with dementia in acute hospitals. International Journal of Older People Nursing. 5, 2, 83-92. Dewing J, Dijk S (2014) What is the current state of care for older people with dementia in general hospitals? A literature review. Dementia. Jan 23. [Epub ahead of print] Evans S, Brooker D, Thompson R et al (2015) Introduction to the transforming dementia care in hospitals series. Nursing Older People. 27, 6, 18-24. Hannan R, Thompson R, Worthington A et al (2013) The Triangle of Care. Carers Included: A Guide to Best Practice for Dementia Care. Carers Trust, London. Manley K, McCormack B (2004) Practice development: purpose, methodology, facilitation and evaluation. In McCormack B, Manley K, Garbett R (Eds) Practice Development in Nursing. Blackwell Publishing, Oxford. Natalwala A, Potluri R, Uppal H et al (2008) Reasons for hospital admissions in dementia patients in Birmingham, UK, during 2002-2007. Dementia and Geriatric Cognitive Disorders. 26, 6, 499-505. NHS Confederation (2010) Acute Awareness: Improving Hospital Care for People with Dementia. NHS Confederation, London. Royal College of Nursing (2011a) Dignity in Dementia; Transforming General Hospital Care. Summary of Findings from Survey of Professionals. RCN, London. Royal College of Nursing (2011b) Dignity in Dementia; Transforming General Hospital Care. Summary of Findings from Survey of Carers and People Living with Dementia. RCN, London. Royal College of Nursing (2013) Nutrition Protected Mealtimes. tinyurl.com/k523kee (Last accessed: June 30 2015.) Thompson R, Heath H (2013) Dementia: Commitment to the Care of People with Dementia in Hospital Settings. RCN, London. NURSING OLDER PEOPLE September 2015 Volume 27 Number 7 23