Dementia is a national challenge which requires local solutions and a personalised approach, argues care coordinator Jennie Goacher, who is employed by East Lindsey PCN under the additional roles reimbursement scheme (ARRS).
I have been working as a care coordinator in a practice that supports residents from a small market town and the surrounding rural villages in Lincolnshire for nearly four years and have found one of the biggest challenges is supporting people with dementia and their families. I am sure this is not just a local challenge but one that is replicated across the country.
According to NHS England, more than 500,000 people have a recorded dementia diagnosis. In Lincolnshire, Alzheimer’s Society data indicates that 7,323 residents had a diagnosis - with our own practice dementia register showing 141 such patients.
Not long after starting my role, I was tasked by the lead GP to understand what support was available to residents – and an internet search found very little within a 10-mile radius. Faced with elderly residents who often do not drive or only drive short distances, and with sparse public transport links, it was evident that access to services can be challenging and that a local solution was required.
A local solution
Working with local authority and voluntary sector representatives, I organised a listening event at the local library, inviting everyone with a dementia diagnosis and their families or carers to attend. The aim was to understand what the local population wanted in terms of support. We did not want to provide something that didn’t meet the needs of our patients.
We asked set questions, and nearly everyone who attended agreed that local support was needed and that a memory café could provide it. Rasen Area Memory Café has now been running for two-and-a-half years. We meet once a month, and although our numbers are small, everyone who attends agrees that the café provides support for both the person living with dementia and their family and friends. The group offers peer support and we often hear carers swapping stories and tips.
I attend to represent the surgery and to offer advice, guidance and signposting. I ensure that a wide range of leaflets and booklets relating to dementia are available for people to take away, and I am constantly looking for up-to-date information to pass on. I organise entertainment and invite speakers who provide informal talks about services that can help people to live well with dementia. We have had talks about scam awareness, a food-tasting session provided by a frozen food delivery service, and a visit from someone from the local carers’ support service to name but a few.
Arranging dementia reviews
Being involved with the memory café has allowed me to develop good relationships with our attendees, and to understand the daily challenges faced by our patients and their carers. This understanding has made organising the annual Quality and Outcomes Framework (QOF) dementia review easier; many of the patients on our register know me and are happy to engage in this health check.
I now also have responsibility for arranging the dementia reviews and complete these reviews alongside a colleague from our older adult’s team. The dementia review not only addresses the physical aspects such as weight, pulse and blood pressure, but also the social and psychological impact of the disease on the person and their carers. This allows for the development of a personalised care and support plan which can then be reviewed and adapted as required.
Dementia reviews are usually carried out in the patient’s home and family members are encouraged to attend. Undertaking the review in a familiar setting appears to put the person living with dementia at ease, and I find the personal objects that surround them can help to generate conversation and encourage the patient to talk about their life.
I use a strength-based approach, focusing on what the patient can do for themselves, before exploring areas that may be more challenging. I will ask the patient about their daily routine and their likes and dislikes, focusing on getting to know them and their family. This approach also allows me to understand what support is already available to the patient and their family, thus allowing conversations around additional sources of support and how these can be accessed.
Use of a ‘support sequence’ was encouraged during personalised care training previously undertaken, and I follow this so that patients become aware of informal support options which may be available to them.
This can include use of technology, equipment and adaptations, as well as input from family, friends, neighbours and the wider community. Patients and carers often seem to think that their only option is a formal package of care, so exploring other options allows them to have control and choice regarding current and future support needs.
Providing patients, their families and carers with this kind of choice and control - while considering their individual needs, preferences and circumstances - is at the heart of the personalised care model.
Holistic care
As an Ambassador for the Personalised Care Institute – a not-for-profit organisation established by NHS England to support the delivery of personalised care education nationally – I’m proud to promote the value of personalised care and drive initiatives on the ground that ensure care is tailored to people's individual health and care needs.
In our practice’s case, we’ve used personalised care approaches to build a supportive community space for people living with dementia, enabling us to provide holistic care that takes into account what matters to them as individuals and addresses their physical, mental and social needs.
Jennie Goacher is a care coordinator at East Lindsey PCN in North Lincolnshire, and a Personalised Care Institute ambassador. She has over 30 years of nursing practice and teaching experience within the NHS, armed forces and higher education sector.