Willow ward in Charlton Lane Hospital has adopted John’s Campaign. This means carers of patients with dementia, whose presence has numerous benefits, are welcome at any time
People with dementia often find it difficult to cope with being in hospital, particularly on mental health wards. The presence of their informal carers can have numerous benefits, including reassuring them, helping with their care, giving staff details of their needs and wishes, and helping with decision making for patients who lack mental capacity. John’s Campaign defends the right of informal carers to visit patients who have dementia at any time during their hospital stay. This article explores the evidence on people with dementia in hospital and the benefits of the presence of carers. It also describes how John’s Campaign was implemented on a mental health ward in Cheltenham.
Citation: Atkins R (2018) Implementing John’s Campaign on a mental health hospital ward. Nursing Times [online]; 114: 12, 21-23.
Author: Rhiannon Atkins is staff nurse, Charlton Lane Hospital, Cheltenham.
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John’s Campaign was developed to encourage care homes and hospitals to allow informal carers of people with dementia to visit their loved ones at any time (Box 1). This article discusses the benefits of having such carers – spouses, partners, children, other relatives or friends – of people with dementia present in hospital and describes how John’s Campaign was implemented on a mental health ward.
Box 1. John’s Campaign
John’s Campaign, founded in November 2014, is named after Dr John Gerrard, who had dementia and suffered significant decline during a hospital stay. It supports the right of family carers to stay with people with dementia and the right of people with dementia to be supported by their family carers. It is underpinned by the belief that carers should not simply be allowed, but welcomed, in all hospital settings (and potentially all other caring institutions where people with dementia live away from home) and that collaboration between patients and all those connected with them is crucial to their health and wellbeing.
The notes for self-assessment in Dementia Action Alliance’s (2018) Dementia-Friendly Hospital Charter state: “The organisation actively supports the rights of carers to stay with the person with dementia where possible and is signed up to John’s Campaign or other similar initiatives. Flexible visiting is offered, including overnight stays, in line with the needs of the person with dementia and their carers”.
Dementia and hospital
The number of people with dementia is growing rapidly. The Alzheimer’s Society estimates that there are currently 850,000 people with dementia living in the UK. It also forecast that, in a worst-case scenario, the number would increase to over 1 million by 2025 (Alzheimer’s Society, 2014).
Among people with a dementia diagnosis, 25% will be admitted to hospital at some point, whether due to their dementia or for other unrelated health issues (Dementia Action Alliance, 2011). Hospital admission can be a daunting experience for people with dementia; they find themselves in an unfamiliar environment away from their loved ones, which can result in disorientation, distress, anger and difficulty coping with the situation.
Experience of patients
Being in hospital can make any patient feel lonely, sad, worried or lost, which might lead to or compound mental health difficulties such as depression and anxiety. For people with dementia, hospital can be an even more frightening and traumatic experience (Scrutton and Brancati, 2016; Cunningham and Archibald, 2006). In a 2015 survey of 570 carers, relatives and friends of people with dementia, 92% said hospital environments were frightening for the person they cared for or knew, and 90% said the person became more confused while in hospital (Boaden, 2016).
Among people aged 65 years and over admitted to a mental health hospital, 45% are detained under the Mental Health Act (1983) (Health and Social Care Information Centre, 2015); the majority of these also have an organic disorder (Social Care Institute for Excellence, 2006).
People with dementia who find themselves in a locked environment on a mental health ward may feel imprisoned or punished and not understand or remember where they are or why. The restrictions to their freedom, the unfamiliarity of the environment and the separation from loved ones may result in increased confusion, distress, disorientation and anger.
Challenges for staff
To ensure people with dementia do not suffer during their stay in hospital, health professionals need to create an environment that matches as closely as possible what these patients are used to at home, including closeness with relatives or friends (University Hospitals of Leicester, 2011). Nursing staff find it difficult to do this in practice due to limited time, work pressures and staff shortages (Royal College of Nursing, 2012). Staff are often too busy to provide the level of care and support they would like to be able to offer to people with dementia (Pike and Beveridge, 2011).
In hospitals, clinical tasks such as observations may be prioritised, leading staff to become more task-centred than person-centred. Lack of time is one barrier to good nursing care for this patient group; another is not having access to relevant resources and training to develop the skills needed to interact with such patients or support them appropriately (Stewart et al, 2014).
Benefits of carer presence
As part of the ‘triangle of care’, carers play a crucial role in planning and delivering care and supporting patients with dementia (Spencer et al, 2013; Worthington et al, 2013). They can help provide a level of care that nursing staff struggle to deliver (RCN, 2013). They can help patients in terms of comfort, attachment, identity, occupation and inclusion – five psychological factors that Kitwood (1997) found could improve wellbeing in people with dementia. These benefits can result from carers’ presence alone.
The presence of a carer can make the hospital environment more familiar and less frightening for a person with dementia (Alzheimer’s Society, 2015; Shah et al, 2010; North Carolina Department of Health and Human Services Division of Aging, 2009). On a practical level, a carer can alleviate patients’ anxiety, encourage them to take part in activities, keep them hydrated and ensure they eat enough (Healthcare Improvement Scotland, 2016).
In a survey of 570 informal carers, only 2% said all hospital staff understood the needs of people with dementia (Boaden, 2016). Considered ‘experts’ on the people with dementia for whom they care, carers know how best to work with these patients and can give nursing staff information that will help them understand their needs. Carers can also support staff in making best-interest decisions in cases where the patient lacks mental capacity.
In a mental health setting, this information sharing is crucial because staff need to know about patients’ physical health, as well as any advanced plans, wishes and preferences they may have made. Carers can, therefore, help staff personalise care and adopt a more holistic approach, leading to enhanced care and improved experience for patients.
To summarise the benefits of involving carers in supporting people with dementia on mental health wards, I have devised an acronym, CARERS, which stands for:
- C – comfort;
- A – assist;
- R – resource;
- E – encourage;
- R – reduce dehydration/distress/falls;
- S – support.
John’s Campaign at Willow ward
Charlton Lane Hospital provides specialist assessment, treatment and care for older people with functional mental health problems (Mulberry ward and Chestnut ward) and with dementia (Willow ward).
On Willow ward, we already had flexible visiting times for some carers, notably those who live far from the hospital. However, because we could see the significant benefits of carers being present on the ward, we wanted to allow all carers to visit at any time and so decided to implement John’s Campaign. We discussed how we were going to do this with the manager, charge nurses, staff nurses, healthcare assistants and matron. We developed Anytime Passes for carers and guidance for both carers and staff. Dates were arranged for training the team about John’s Campaign and how we planned to trial it. Unrestricted visiting times for carers were trialled from October 2016 until March 2017. During that period, we received positive informal feedback from carers (Box 2).
Box 2. John’s Campaign trial: carer feedback
“It’s lovely to be able to spend a lot of time with my loved one.”
“I can get involved in his care.”
“I was able to give him a Christmas we usually have.”
“I can visit when it suits me and not be pressured to leave early.”
“I’ve been able to build relationships with staff.”
Eliciting carers’ feedback
In June 2017, we created a questionnaire to collate more formal feedback from carers using the Anytime Passes; 11 carers were asked to complete it and all did so. They said they had enjoyed being able to visit at any time and thought it had benefited their relative or friend. All felt their relative or friend ate and drank more when they were present, and all said the Anytime Pass had strengthened their relationships with staff – they felt more involved in care and more listened to.
Nursing staff can find change difficult – it can be emotionally challenging and cause uncertainty (Holbeche, 2006). Some staff were struggling to understand the purpose of adopting unrestricted visiting hours and how it would benefit patients and carers. A meeting was held and staff were invited to express their concerns; attendees discussed how to address these.
Staff comments were noted and changes made – for example, staff requested that carers tell the ward if two or more were visiting, so a room could be prepared for them. As a result, this was added to the carers’ guidance. This was followed by a staff ‘away day’, when the purpose of John’s Campaign was explained again and further feedback elicited from staff. As a result, a John’s Campaign pathway was created to:
- Remind staff of the campaign’s aim;
- Explain how we implement it;
- Prompt them to offer Anytime Passes to carers – generally, Anytime Passes are given to two specified main informal carers, but this can be flexible.
The guidance for carers was amended with input from staff. It includes a form in which we ask carers to indicate the type of activities they would like to get involved in (from a specified list) and makes recommendations about them (Box 3). The form specifies that carers have no obligation to get involved in any activities, as their presence alone can be of great benefit.
Box 3. Willow ward carer form
The carer form asks carers which activities they would like to be involved in from the following:
- Support with eating or drinking – if two people are visiting, we ask that only one person assists with this activity
- Provide comfort – for example, support the person to hold an object, hold their hand or repeat comforting sentences; staff can give you other ideas around this
- Support the person in low-key activities – these activities might involve reading a newspaper or magazine and looking through photos
- Support the person in more structured activities – this might mean getting involved in the drama/music group on the ward; if one of these groups is taking place while you are visiting, you can join in or wait until it has finished
- Support with providing personal care – a staff member will discuss this with you to ensure that both your safety and the safety of the person you are visiting are well-supported; you will be given a care plan identifying the person’s support needs
- Walking around the corridor or in the garden with the person – there are opportunities to go outside but, as this will require additional staff support, it will need to be discussed with the team beforehand
Source: Adapted from the carer form in the carer guidance at Willow ward, Charlton Lane Hospital
Staff on Willow ward have now started to implement the new policy of unrestricted visiting times for carers and promote the Anytime Passes. Regular meetings will be held to keep staff motivated and empowered. Box 4 describes how one of our patients has benefited from the presence of his wife on the ward.
Unrestricted visiting times for carers of people with dementia who are hospitalised on a mental health ward can have many benefits, including:
- A normalised environment;
- Reduced distress, anxiety or agitation;
- Improved hydration and food intake;
- More tailored care;
- More effective ways of addressing the patient’s psychological and physical health needs.
Such an approach fosters holistic care, which is paramount in a mental health setting.
Box 4. Simon and Elly Carter
Simon Carter* has Alzheimer’s disease and his condition had deteriorated while he was living at home. Having been admitted to Willow ward, he was refusing to eat and drink, was becoming agitated and at times displayed aggressive behaviour towards staff. After Mr Carter’s wife Elly* started using an Anytime Pass, there were notable improvements. When she was present, Mr Carter would eat and drink more; he was also more settled – for example, he would sit down for longer periods. We thought this was probably because he felt reassured by the presence of a familiar face and was receiving extra attention from his main informal carer.
*Names have been changed
- Staying in hospital can be daunting and distressing for people with dementia
- John’s Campaign defends the right of carers to visit people with dementia in hospital at any time
- The presence of informal carers on hospital wards improves the care and experience of people with dementia
- Informal carers can be invaluable sources of information about patients with dementia
- Unrestricted visiting hours allow carers to get to know staff and become involved in the patient’s care
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