Bristol Dementia Wellbeing Service – an integrated dementia pathway

Holmes C, Collings S (2023) Bristol Dementia Wellbeing Service – an integrated dementia pathway. Journal of Dementia Care 31(5) 35-37.

Inspired commissioning, a highly integrated approach and close relationships with diverse communities are key components of the Bristol Dementia Wellbeing Service.  Carrie Holmes and Stephen Collings describe how it works.

Bristol Dementia Wellbeing Service (BDWS) is a unique service delivered in partnership between Alzheimer’s Society and Devon Partnership NHS Trust. Operating since 1 April 2015, the service is commissioned by Bristol, North Somerset and South Gloucestershire Integrated Care Board and works alongside GPs across Bristol to support people living with dementia from diagnosis to end of life.

The service was commissioned after feedback from people living with dementia, their carers and families and other stakeholders, that dementia should be treated as a separate pathway, with support provided throughout people’s journey with dementia – to live as well as possible, for as long as possible.

It is fully funded by the local integrated care board as dementia support is one of the four pillars of its Ageing Well Strategy, underpinned by the commissioning ethos to promote people’s quality of life as they get older, including supporting people to stay healthy at home.

Bristol has a population of approximately 700,000 with 61,000 over 65. Expected dementia prevalence is estimated at 4,340 (March 2023). Working with Bristol’s GPs, the service helped to improve the city’s diagnosis rate from 50% in 2015 to 76% in early 2020. After dipping during Covid, currently Bristol’s diagnosis rate (71%+, March 2023) remains higher than the national rate of 63% and the national target of 66.7%.

One of the unique features of the service is that it does not discharge, and is currently actively supporting over 3,300 people living with dementia and their families at all stages through to end of life. Often this means they have the same assigned member of staff as their point of contact throughout their journey, providing the continuity of care that people affected by dementia asked for.

The service has just over 100 staff across a variety of roles. The majority are either dementia navigators (employed by Alzheimer’s Society) or NHS-employed dementia practitioners (social workers, nurses, occupational therapists and physios). There is a care home liaison team who are linked with every care and nursing home in Bristol. The service also includes a psychology and medical team, administration support, and community development team.

Bristol is a diverse city, with large populations of Polish, Chinese, South Asian, Black Caribbean, Black African and Arab communities. The Bristol Dementia Wellbeing Service (BDWS) took part as a partner organisation in the research project “The Dementia Experiences of people from Caribbean, Chinese and South Asian communities in Bristol” overseen by the University of West of England (Bristol BME People Dementia Research Group 2017).

In recognition of the diverse communities served by BDWS, the role of community development coordinators was introduced, to ensure the service is able to meet the needs of all people diagnosed with dementia in Bristol.

Service overview

Here is how BDWS works:

• Access to early diagnosis. While GPs continue to diagnose more straightforward cases, where the presentation is more complex, they refer to BDWS for assessment and diagnosis.
• The service has never operated a waiting list – people’s first appointments with us are booked within 10 days following acceptance of the referral from the GP.
• Every GP practice in Bristol has a named dementia navigator and a dementia practitioner. Navigators support the person with dementia alongside their family and carers, working to maintain independence and promote quality of life. Alongside diagnostics, practitioners provide specialist input where there is greater complexity, or at times of significant change.
• The GP remains the care coordinator when someone may have dementia and for post-diagnosis support, but can access advice and education through the service, whether this is in relation to diagnosing dementia, managing risk or prescribing.
• Following diagnosis, everyone receives a personalised wellbeing plan, developed by the dementia practitioner or navigator alongside the individual, their carers and family. This includes health and functional skills as well as a broader assessment of the psychosocial context.
• The service has a dedicated website* and a phone-based access point open to all, whether carers are calling concerned about changes for a loved one, or professionals seeking advice. This line is open Monday to Friday, 8am to 6pm.
• BDWS’s care home liaison team supports a whole-home approach to nursing and residential care.
• Specialised young onset support.
• Support for people to engage with research opportunities.

The wellbeing plan drawn up for each individual is person-centred, and responsive to what the dementia navigator or practitioner observes or is told by the person with dementia and their family regarding what is important to them, both now and into the future, including advance care planning. It is not a checklist. Its focus is on maintaining independence, through psychoeducation, to enhance people’s ability to manage their own condition, alongside signposting to peer support groups or interventions that improve or maintain social connectivity.

The majority of people living with dementia in the community are supported by dementia navigators who will contact them at least once every six months to explore how their circumstances may be changing. They provide practical guidance and emotional support, tailoring information and signposting to people with dementia and their care network. They help carers access a carer’s assessment.

Navigators can also signpost to other local Alzheimer’s Society groups, such as dementia support cafés, Singing for the Brain or carers’ groups. The service also includes the local Alzheimer’s Society ‘Side by Side’ offer, whereby service users are paired with volunteers based on a shared interest.

At times of significant change, the assigned dementia practitioner can also provide additional support and offer timely interventions. If someone ultimately needs to move into a care home, there is an internal handover between the navigator and a practitioner working in the care home liaison team, who will then pick up this support.

The care home liaison team maintain this person-centred delivery with a whole-home approach, engaging with staff at all levels, with a focus on prevention, and reviewing and reducing the use of antipsychotic and other psychotropic medications. The work of this team has helped avoid admissions to hospital and assisted with discharges back to care homes.

In addition, during the pandemic, the care home liaison team provided extra support to care homes, including offering support for the emotional wellbeing of care home staff and jointly producing a resource pack to help them relate to their clients.

Adult social care is not a formal partner of the service, but the service works closely with its partners in social services. A number of practitioners come from social work professions, so there is a good understanding of the social care needs of people affected by dementia.

The service has a psychology-led additional therapies team which can deliver targeted interventions such as cognitive stimulation therapy, living well with dementia education, psychoeducation and one to one therapy.

Benefits for minority communities

BDWS recognises the impact of health inequalities. The community development team is wrapped around the core provision of the service, acting as a resource to the clinical teams.

Community development coordinators are dedicated to building relationships with seldom heard-from groups and communities, identifying and highlighting barriers that people are experienced in accessing the service. They work together with leadership and the clinical teams to develop solutions and bring about organisational change, enabling better access to the service.

Once a relationship has been established with a community group, a consultation is offered to hear what communities and their members find prohibits them from accessing health care services: for example, poor lived experiences of health services, cultural beliefs around dementia, language barriers, etc.

The outcomes of the consultation are shared internally with the whole service leadership team, and recommendations are made to adapt the service to meet the needs and wishes of the community or group who have been consulted. This keeps equality, diversity and inclusion at the heart of service decision-making and allows for a whole-service view and approach to adaptations. The true impact of community development within an integrated service can be seen in the fact that the influence extends across the entire dementia pathway.

For example, it was identified that standard cognitive assessment tools such as the Addenbrookes test (ACE III) were not always appropriate for assessing a person who is not culturally British, due to the euro-centricity of language and formatting. Following engagement of leadership, including the service’s clinical psychologist, the RUDAS (Rowland Universal Dementia Assessment Scale) was added to the suite of assessment tools used by the service, and full training was provided to practitioners on its application and use.

Other outcomes from this approach include:

• The production of six short films in local languages about dementia, viewed over 20,000 times and available on the service’s website
• Investment in translation and interpretation options, including telephone interpretation
• Establishing a Deaf BSL pathway, including diagnostics undertaken alongside the local specialised deaf service, a self-referral route for Deaf BSL users, and service information provided in BSL videos

The community development coordinator team also provides dementia education and awareness across communities where dementia may not be well understood, and supports other local groups or services to become more dementia-friendly through education and advice.

Staff seeking further cultural understanding to support them in their roles can access fact sheets on cultural, spiritual and communication needs for different heritages that have been produced by the community development team to ensure inclusion in the widest sense.

Additionally, one of the community development coordinators provides education to children and young people in primary and secondary schools across Bristol, building learning through the key stages, including age-appropriate assemblies, Dementia Friends sessions, parents’ evenings and also a project to deliver sessions alongside people affected by dementia to raise awareness and reduce stigma. The team can also work directly with navigators or practitioners when a child is struggling with the diagnosis of a parent or grandparent.

Service impact 

Since BDWS went live it has resulted in some marked improvements and achievements, as these figures indicate:

• Local diagnosis rates have increased from 50% to 69%-plus.
• Number of admissions from the BDWS to mental health inpatient beds has significantly reduced. This means that people are being supported to remain well for longer in their own homes, including those in care homes.
• The service takes a proactive approach to staying in touch. Of the 3,300-plus people who receive the service, whether in the community or care homes, over 97% have received a clinical contact in the previous six months.
• BDWS receives regular feedback through a friends and family survey. Over 98% of returns indicate people are either likely or extremely likely to recommend the service.

You can read about the BDWS’s pioneering model of access for the Deaf BSL community in “EDI: Actions not words – a recipe for change to address health inequalities” in this year’s March/April issue of JDC (Caverly & Holton 2023).

*For the BDWS website, go to www.bristoldementiawellbeing.org.

References

Bristol BME People Dementia Research Group (2017) The Dementia Experiences of People from Caribbean, Chinese and South Asian Communities in Bristol.  Bristol health Partners.
Caverly T, Holton R (2023) EDI: Actions not words – A recipe for change to address health inequalities. Journal of Dementia Care 31(2) 24-26.