Case Study

We’re Dementia UK – the specialist dementia nurse charity. Dementia is a huge and growing health crisis. Almost all of us will know someone with dementia – whether it’s a family member or a friend. There is no cure for dementia. But there is care. And care can change lives.

Our nurses, called Admiral Nurses, who we continually support and develop, provide life-changing care for families affected by all forms of dementia – including Alzheimer’s disease. For families affected by dementia, they can be a lifeline.

When people are struggling, our nurses help them take back control. When family and friends are worried about a loved one, they give them confidence to manage their future with dementia. We help people living with dementia stay independent for longer and support the people caring for them. We help to give them the strength to cope with the bad days, and the energy to enjoy the good days.

A new virtual clinic launched during lockdown offering free, confidential, easily accessible appointments with an Admiral Nurse by phone or video call which quickly expanded to meet the increasing demand for support.

The development of a bespoke booking platform with user-friendly technology to facilitate sessions, achieved by sharing clear objectives, use of common language and a strong leadership presence driving the project forward.

Collaborative working between Dementia UK, an external software consultancy company and the Lived Experience Advisory Panel (a panel of people living with dementia and family carers) led to a highly valued service that continues to grow and receives consistently high feedback. 6-monthly evaluation of appointments booked and reasons for making appointments demonstrate both the complexity of support given and benefits gained by families.

The service has been established for just over a year, having helped over 1,900 families and continues to grow. The model is now being replicated for other areas of the charity and a business model for other agencies is being developed which is already being trialled.

Closer to Home was created thanks to a partnership between Dementia UK and Leeds Building Society. The original plan was for a mobile support centre travelling around the UK offering Admiral Nurse appointments in local communities. Due to the pandemic and instructions to stay at home, this service needed to be adapted quickly so support could still be offered.

The Closer to Home project was restructured within 4 weeks into a virtual clinic offering families free, confidential phone or video appointments with an Admiral Nurse. This was at a time when other services were reduced or withdrawn and families were often in crisis, experiencing high levels of carer stress with no support available.

The online self-booking system meant people could chose a time and date convenient to them and not have to make alternative care arrangements. It negated any concerns around travelling to an appointment location, allowed families to adhere to government guidance, and removed any issues in relation to physical health or reduced mobility or taking time off paid employment.

Launched in June 2021 using a basic booking system embedded in the Dementia UK website, sessions were facilitated by telephone or by Zoom. The initial offer was 12 appointments/day, three days/week supported by one full-time Admiral Nurse and sessional Admiral Nurses from other areas of the charity.

As Clinical Project Lead, I instructed how sessions could run, provided training and support for nurses, and recruited nurses from across the charity. I provided leadership to ensure a strong team ethic whilst working remotely, and consistency in service provision. Through identification of key people required, a steering group drove the project forward consisting of:

• Information Services, to create suitable platforms and software
• Social media and Communications, to develop web content
• Insight and Evaluation, to collect user feedback and generate 6-monthly reports
• Lived Experience Advisory Panel (LEAP), to give guidance on terminology used and ways to make booking process simpler

Initial feedback collected identified the virtual clinic as a beneficial resource with an increasing demand for appointments. The service was therefore extended to four days/week. However, the booking system struggled with increasing volume. A review of data collected after six months highlighted increases in missed appointments and technical issues, or available appointments not being taken, as well as high levels of administration.

It became clear a new booking process and software was required. Through collaborative working with an external software company, guided by the steering group, a bespoke booking system was created that simplified the booking process, clearly showed available appointments and automated many administration tasks. Members of LEAP were involved in to ensure questions asked and terminology used was clear and respectful. Family carers who had accessed the service were asked for their views and feedback on changes made.

Closer to Home has now expanded to five days/week, supported by four full-time nurses in addition to the Clinical Project Lead. A Project Manager was recruited to support the planned operation of the mobile support centre alongside the virtual clinic, with plans to add more nurses and an administrator in the next few months.

Since launch over 1,900 families and allied professionals have accessed the clinic for support. Admiral Nurses have assisted families throughout the world. The use of video enabled family members to share concerns and information from Admiral Nurses at a time when government guidelines meant many families were separated.

The first 6-monthly evaluation, compiled from the charity’s clinical database and user feedback, shows both the high number of people accessing the service and the reasons for their contact. Along with high levels of satisfaction with the service, it also shows the range of support and complex situations Admiral Nurses were able to advise on when other services were either reduced or withdrawn (see evaluation report submitted for further details).

The use of quality measurement tools to measure concerns and their underlying causes led to areas for improvement being identified and actioned. Tracking the effectiveness of changes made has shown decreases in missed appointments and administration time needed. This has enabled service expansion from three to five days/week, with an increase of 150% in appointments offered since service launch (see FNF presentation poster).

The Future – The increased demand and positive feedback demonstrate both value and need, so virtual clinics will now continue beyond the project end date and operate indefinitely, possibly alongside Dementia UK’s existing telephone helpline service, to offer alternative support to those living with dementia.

A business model is being created based on Closer to Home to promote to other organisations. The virtual clinic can be tailored to the host’s needs to offer support to their workforce. Good examples of this are the trial clinics with a sporting association and a prison service, providing specialist support to associations that in turn support ex-employees, or professionals who may work with people living with dementia.

Closer to Home has also pivoted to provide virtual support during periods of extended absence of community Admiral Nurses, so that families in the area continue to access Admiral Nurse support. This method of clinic delivery extends service sustainability which may have otherwise been interrupted.

Ongoing collaboration with the software company is now enabling the charity to further bespoke the new booking system and tailor this to the needs of other hosts. For example, carers will be able to reschedule their own appointments should circumstances change, rather than currently cancelling then rebooking.

The service is looking to recruit more full-time nurses and is taking the mobile support centre on the road in 2023, offering face to face appointments across the UK alongside the ongoing virtual service.

This project identifies the needs of families affected by dementia and recognises difficulties they face in getting support and attending appointments when they have numerous other commitments.

It was developed very quickly in a pandemic when other services were reduced or even withdrawn. Despite the obstacles government guidelines and restriction of movement created, Closer to Home has supported hundreds of families, minimised the risk of carer breakdown and offered a much-needed lifeline.

The system is adaptable and can be tailored to the needs of any potential host. Using virtual platforms reduces costs such as travel, office space and related costs. The booking system is simple to use and easy to amend to offer timings of appointment timings.

The strong leadership and supportive team of Admiral Nurses, plus input from other Dementia UK departments, means the service tackles challenges with speed and efficiency. The mix of clinical skills, experience and ongoing training from Dementia UK means Admiral Nurses offer the latest evidence-based advice to families affected by dementia.

The Closer to Home service is also completely free and can be used by anyone in the UK regardless of their physical location.

• Start with a clear vision of what you want to achieve, focusing on who will benefit and what you want to deliver.
• Prepare to be adaptable and open to suggestions or alternative solutions from other parties.
• Strong leadership and effective communication, using shared terminology, will help drive your project forward. Identifying key people who can support and implement development of the project is essential.
• Be prepared to think outside the box and explore different resources. Ultimately a strong team bond and support for each other will help see the project to completion and successful ongoing delivery.