COVID blog #7 – Keeping families connected during COVID-19

Families are central to our dementia assessment ward – they are a valuable source of information to help with our assessment and visits are important for both families and the person with dementia. Additionally, the families we have experienced significant stress, distress and trauma and an admission can provoke a wide variety of emotions; so our work always includes offering support to families. This blog post shares our reflections on the importance of families in inpatient dementia care and also on how our ward has continued to keep families connected during the current COVID-19 crisis.

The importance of families

Our ward has always prioritised families as a central part of the care we deliver. Families offer a valuable resource when we are first getting to know somebody and the person may be too unwell or distressed to share information about themselves. This includes a ‘reception meeting, at admission that gives relatives a chance to share their story and tell us about their perspectives and understandings. We also involve relatives in decision making and discharge planning through regular meetings on the ward.

We also offer ongoing family support – whether that be structured face to face sessions with our psychologist that allow a safe space to explore both emotional and practical issues, or through more impromptu discussions following visits or more informal telephone support. Many of our families have struggled with difficult circumstances prior to the admission to our ward. Therefore, the lead up to an admission and the admission itself is often a difficult time; evoking feelings of guilt , sadness and uncertainty about the future. Feelings of loss, grief and anger are also common.

Visits to the ward are important for both our patients and their relatives; and also provide staff with an understanding about how families interact.

Stopping visiting

Our ward made the decision to reduce visiting prior to a restriction being imposed by following government guidance. This was because we acknowledged that our patient group are amongst the most vulnerable to COVID-19 with regards their age and co-existing health conditions. This vulnerability was also often applicable to our families– with many finding themselves in shielding groups required to isolate. We were also aware that implementing measures such as social distancing would be a significant challenge on the ward.

We initially reduced visiting to one named visitor, visiting for 1 hour a day. We also insisted that anyone who had displayed symptoms of the virus, or had been in contact with somebody with symptoms, did not visit the ward. The reactions of families to this restriction varied significantly – and in some cases, close family units with multiple members were forced to choose who could attend. On reflection, this stepped reduction allowed families time to process and consider that further adjustments may be made to visiting: especially as, days later, a restriction on all visiting was introduced by the UK Government. However, it created some difficult conversations between families and may have given families a false hope that visting would continue throughout the crisis.

There have been some benefits to having no visitors on the ward. It has given us the ability to get to know our patients much better and also allowed us to undertake our assessments. From a patient’s perspective; the ward is much quieter and there are significantly fewer people around which has benefited those who are easily overwhelmed by lots of activity. This has started thinking reflectively about visiting moving forwards. However, it has of course been extremely difficult and distressing for many people.

Maintaining contact

It was important to the ward to find ways to create and maintain our relationships and support of families throughout the current crisis.

These circumstances have made it more important than ever to connect with families and allow them a reflective space to discuss their feelings. As a ward, we have nominated one full time staff member exclusively as a family liaison. We have been proactive in contacting families and forming unique relationships with each – including how regularly we contact them, who we contact or the type of contact they prefer. This has included emotional support but also practical updates regarding care and future placement. In some cases, this has also given the opportunity to prepare and support families for eventualities such as end of life care. Just as before, this has provided families with space and time to discuss topics and explore their thoughts, with the consistent relationship allowing them to feel they are able to be open and honest.

From the perspective of the team, this relationship has made conversations that are difficult and could feel inappropriate over the phone much more manageable because of our existing relationship. Feedback from families has been that they still feel like they’re involved in the care of their family member and that there is a continuation in communication.

The continuing contact has allowed us to assist relatives with other aspects of their wellbeing too – including referrals to social services in circumstances where families have other concerns, helping set up prescription and food deliveries where people are shielding, and offer social contact for those who are isolating alone. We have even posted recipes to families who are new to cooking!.

Being creative

Helping our patients keep in contact with their families has been challenging and encouraged us to think creatively. The ward obtained a mobile telephone specifically for patient use to ensure privacy. Using Skype and Facetime has allowed our patients who struggle over the telephone to continue to connect with their loved ones; offering reassurance to both parties. Staff have supported patients with this and the results have been rewarding for everyone involved.

We have also collected e-mail addresses for family members – allowing us to e-mail photographs and videos as often as we can. This has been a great resource for those who would struggle to manage video calls, but also as a source of reassurance for family members of those who may have been anxious and tearful on the telephone. In all cases, families have enjoyed seeing how their family member is doing and also the ability to share this with others in their network.

For those who do not have access to technology such as smart phones and computers, we have posted out photographs and letters. This has also been well received by families. We have also played voice recordings capturing, for example, people singing on the ward to share with family members over the telephone.

These lines of communication have worked both ways. Families have e-mailed photographs and videos for us to share with their relative. Some use e-mail contact to share information about their relative and contact the ward with queries.

Benefits for staff

Having one nominated person to liaise with families was also considered to be of benefit to the ward. It provided a way to alleviate pressure from nursing staff in a crisis situation. Staff have noticed a significant reduction in the number of telephone calls through to the nursing office – this has in turn made it easier in circumstances where staff are trying to contact other professionals. Nursing staff have commented that it has relieved their feelings of guilt that they have been unable to offer families the time and space they need to feel supported and connected with the ward.

Initially, we underestimated the power of feedback from families and the impact this has on morale on the ward. This was especially prevalent in challenging circumstances; where acknowledgement and thanks from a family go a long way. Therefore, we started collecting weekly feedback from families and messages for the ward staff, which are then circulated to staff through e-mails. The comments from staff about these e-mails have been positive and it has encouraged everyone to become involved.

Re-starting visiting

As a ward we are very aware that dementia is a progressive and life limiting condition. Therefore, as soon as we could, on 28^th May we were the first unit in our Trust to start visiting again.

This initially began with visiting in the garden. Each patient was individually reviewed and risk assessed – considering factors such as ability to tolerate a visit and their underlying health conditions, and also factoring in the extent to which family members have followed the guidelines regarding social distancing and their own health. We considered ways to provide physical reminders regarding social distancing – being in separate areas of the garden with a short fence in-between for more active patients and distanced seating for others. Each visit has consisted of a member of staff to offer support to the family member and also staff to support the patient; this is to ensure social distancing is maintained but also to help facilitate the visit and ensure both parties feel emotionally supported.

The first visits to the ward have been successful. We have permitted one visit per day to the ward in order to provide appropriate levels of support. Feedback from families has been largely positive – with some feeling very overwhelmed that they’ve been able to see their relative again. Families have also commented that being supported by the person they have been interacting with on the telephone has made a difference in terms of feeling familiar with the ward and staff, and feeling supported and able to discuss their thoughts and worries openly. These visits have also provided a morale boost for the ward staff as it generates a feeling that we’re moving forwards.

Unfortunately, visits in the garden come with various restrictions as they are extremely weather dependent. We have now recommenced indoor visiting which occurs off the ward in a designated area which is not used for any other purpose, and is thoroughly cleaned after each visit. This has not been without its challenges as families are required to wear PPE at all times which has impacted on patients abilities to recognise and hear family members. Some patients have also struggled with social distancing more than anticipated; although we continue to learn and adapt, and some visits have to be facilitated through windows to reduce risk. Recommencing visiting has been a learning process for all involved and is something we review regularly on an individual basis.

In conclusion, COVID-19 has encouraged us to think more creatively when involving our families; our hopes are that this will continue even after the crisis. Whilst recommencing visiting raised anxieties throughout the team, they have also raised morale on the ward. However, it has also created discussions about visiting in the future and considering potential adjustments moving forwards.

Rebecca Dunning, Humber Teaching NHS Foundation Trust, and Emma Wolverson, Humber Teaching NHS Foundation Trust, University of Hull, Hull, UK