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Many of the changes captured as part of the high impact change model imply the need for wider cultural change or changes in how people work who care for and support people living with dementia.
The earlier enablers of change covering skills, education, training and support and effective communication are also integral to this topic and challenge.
Recognising the need for cultural change begins with acknowledging that ‘standard’ clinical protocols are not suitable for people with dementia and/or delirium and that they often lead to a poor service, suboptimal user experience, inefficiency and higher cost for the ICS. There is therefore an opportunity for leaders to re-set the dialogue and agenda regarding dementia and delirium and prioritise these as critical areas for change in support of improved sustainability. Given the nature of these conditions and the challenges local areas face, this requires persistent, present, person-centred, compassionate leadership that recognises a change in language and culture is as important as a change in pathway or process.
Opportunities for leaders include:
- having a good insight into population health data regarding dementia and delirium so that the needs of the local population are understood and used to inform local priorities, design services and raise the profile of dementia across teams
- embedding and sustaining cultural change at every level in written and verbal communications such as policies and procedures, induction, metrics, Board objective, clinical documentation
- embedding dementia and delirium specific care into pathways across systems in the urgent care, acute hospital, discharge, intermediate care and long-term care space
- ensuring coherent ambitions and plans for the development of dementia and delirium services are embedded into core ICS strategies across the ICB, providers and Local Government; and clarifying local accountability for delivery
- addressing the lack of standards, measures and performance data in place regarding dementia and delirium so that there is greater visibility of performance and the ability to learn and improve (to help achieve parity with physical health services)
- establishing key roles in the ICS with accountability for driving through a change in culture and approach (i.e. Lead Nurse for Dementia, Digital Lead for Dementia, Dementia Champions at Place) and have a responsible executive sponsor to prioritise this work. These ‘leads’ will have a responsibility to work with other system leaders such as the homelessness lead, as part of a wider multidisciplinary network
- set up a people with lived experience group, that includes people with lived experience of dementia and delirium. It should engage with communities to draw out what would make the biggest difference to the local area, to feed local improvement plans
- prioritise the development of development and training capability utilising tools to educate and skill the workforce and support a change in approach and culture as described in the skills, education, training and support and effective communication sections of enablers
- promoting a new and consistent person-centred language and terminology regarding dementia and delirium recognising that language is key to fostering the right behaviours, attitudes and culture.
- increasing the role of the VCFSE sector in delivering care and support to people living with dementia, and in doing so evolving a less medicalised model that meets holistic needs
- connecting people working in different parts of the local area, building mutual understanding and a culture of collaboration and sharing of good practice
- addressing inequalities, for example by ensuring sufficient attention is paid to improving diagnosis rates in underserved communities and providing equitable access to dementia support services.
Supporting resources
End of Life Care in Frailty: Dementia (British Geriatrics Society): This includes useful material on how changing the language used in talking about dementia, changes the way we think about the disease and how it presents, leading to a change in how we act. For example, moving away from the term ‘challenging behaviour’ to ‘signs of distress’.