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Key questions on dementia diagnosis, care, and research

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Zibiah Loakthar and Ellen Gavin report on issues raised in a recent Westminster Health Forum conference on the ‘Next steps for dementia diagnosis, care, and research in England".

Key questions arising from the Westminster Health Forum include: 

Research 

  1. At least 69,000 died of dementia in the UK in 2018 and 69,000 died of Covid in 2020. Dementia was said to be the leading cause of death in 2021. Why do people react differently to these outcomes? 

  2. Data enables us to look at opportunities and explore what is and is not working and what needs to be done. How can we address the lack of data in relation to dementia? 

  3. How can we bring together key players across the dementia research landscape and break silos between pre-clinical and clinical research?

Diagnosis 

  1. How can we use a range of tools to ensure timely and accurate diagnosis?  

  2. How can we change the diagnosis and care pathways, so clinicians are incentivised to use new technology and recognise the benefits to ensure optimum results for patients? 

  3. How can existing challenges in detecting cognitive impairment be overcome?

Support 

  1. How often do we listen to the voices of unpaid carers when we discuss dementia and dementia policy?  What are the barriers to hearing from family carers and how can we overcome these barriers? 

  2. Can we learn from good practice in other countries? For instance, in the Netherlands, most people diagnosed with dementia will be allocated a Dementia Care Navigator as a main point of contact so that they and their families are not left going from pillar to post. 

Strategy 

  1. What should a new strategy for brain health include? 

  2. How can we strengthen and develop existing networks and bring key people and key networks together for shared learning, ideas and a joined-up approach to dementia research support and care? 

  3. How can people living with dementia be actively involved in innovative and sustainable dementia programmes, research and strategy development as key partners helping to sharing of resources and knowledge? 

Dementia is associated in a negative way by some with the word ‘demented’. Some people living with dementia prefer their condition to be described as "brain disease". Could referring to dementia as a brain disease attract greater respect?

Technology 

  1. What opportunities may exist for using innovative technology to support people living with dementia?

  2. How can digital innovation in relation to dementia can be improved and used to its full potential? 

Here we share thoughts on key issues raised in the Westminster Health Forum

Improving diagnosis 

Timely diagnosis can be a postcode lottery. The Covid pandemic has created a backlog of people being diagnosed and being referred to support. According to Fiona Carragher- Director of Research and Influencing at the Alzheimer's Society, even with no new referrals it may take at least four years to get through the backlog created by the pandemic.   

Our view: Effective and timely diagnosis of dementia is vital so that people and their families can access a range of different supports. We can join across networks in calling upon policy makers and those funding health services to mobilise resources to address this backlog. 

Support for people post-diagnosis 

There are geographic inequalities in support and services offered to people post diagnosis. These findings highlight that there is a lack of shared-care pathways. 

Our view: There is a need for shared-care pathways and campaigning for better support services in some regions.  

Support for people living with dementia and their families during the pandemic 

The pandemic has had devastating effects on some people living with dementia and their families. It disrupted many people's routines, limited people's social contact and face-to-face engagement and had an impact on support groups available. Reduced social, physical, and cognitive stimulation has contributed to hastening the onset of people's dementia. The pandemic has created additional barriers for people to access health care and support. 

Our view: We can reflect on any lessons learned from the pandemic and lockdown experiences so that should we ever return to a pandemic situation we can better support people. The pandemic has highlighted the value of face-to-face support for both people living with dementia and for family carers. At the same time, we can recognise that the pandemic has positively opened up new thinking about other additional forms of support. It has led to people developing skills with technology and virtual contact and these can also support social connection.  

At Irish in Britain for instance, the pandemic led us to experiment with KOMP technology to support families and community members connecting with each other and reduce social isolation. Virtual support can continue to play a role in helping connect people and whilst the possible benefits of virtual contact may be very limited for people with advanced dementia, there are clearly benefits to people at risk of dementia or in early stages as well as clear benefits for family carers.  

The benefits of creative arts and social connectivity

Social prescribing is transforming the diagnosis narrative for dementia. According to Veronica Gould from Arts for Dementia, social connectivity plays a vital role in reducing dementia symptoms by an average of four years. Dance can offer a joyous route to promote health and wellbeing; music making can be a good workout for the brain. Furthermore, creative arts encourage self-expression and can help reduce stress. This can combat fear and isolation and in turn, help to preserve brain health. 

The NHS Social Prescribing Student Champion scheme encourages medical and social care students to interact with participants with cognitive challenges and carers at arts workshops, helping transform the diagnosis narrative for dementia. 

Each GP appointment is an opportunity to refer patient to social prescriber link worker for reenergising arts. Ideally, link workers could be available to every GP and weekly participatory activities would be encouraged.

Our view:  The importance of socialising, mental and creative stimulation should not be underestimated when seeking to preserve brain health. Community organisations play a role here in offering culturally relevant arts activities that can promote health and wellbeing. 

Promoting dementia understanding and awareness 

Dementia needs to be better understood by the wider public and this could be done in many ways, for instance through this dementia awareness game- www.dementiagame.com  

Our view: Dementia is often in the news and has an impact on our community but yet still remains something of a taboo topic. We can seek to encourage more conversations about dementia to break this taboo. Rather than highlighting disability in connection with dementia, we can also emphasise capability. People living with dementia and family carers are sometimes overlooked and excluded from advocacy and awareness raising but their voices and views should be at the heart of this work. Organisations can find creative ways of ensuring people have their voices heard and be at the heart of informing good practice and policy making around dementia diagnosis and care.  

Key priorities for dementia research 

Priorities include investing in addressing the knowledge gap, promoting collaboration, exploring early intervention and early detection, and investigating how we can use technology to its full potential. 

Our view: Dementia is complex. There is value in people coming together from multiple backgrounds, positions, and perspectives from across the community and from across professional fields to design and conduct research. People living with dementia and family carers are experts by experience who can share their experiences and views when consulted by researchers, but also be involved in shaping the research questions and research design from the outset.