Visit our devolution and LGR hub for the latest information, support and resources
One of the most important factors cited by stakeholders in shaping the high impact change model is the need to improve communication at each stage of the person’s journey.
Reports show that communication with people living with dementia and their care partners can be ambiguous, inconsistent, incomplete and lacking in empathy. It should take into account nuances for people from different ethnic and cultural backgrounds (who can be impacted by a lack of access to culturally appropriate information), those with learning difficulties, and those in health inclusion groups, who often experience poor outcomes.
Communication within and between teams of professionals is of equal importance, and where it is not consistent and well-coordinated, it also ultimately negatively impacts the person living with dementia and/or delirium and their care partners. A focus on the basics of ensuring teams know what other teams do, how they contact one another, who to speak to about what and building trusted relationships will lead to significant improvements in communication.
This is particularly important given that of the biggest problems reported by ICS stakeholders is that clinical and social care notes are siloed i.e. they sit in multiple places that do not talk to each other (i.e. general practice, social care, mental health, acute trust, district nursing) and therefore communication supports in bridging this gap whilst improvements in data interoperability are being worked through.
Both the content and impact of communication are equally important, especially when people and families are dealing with the high stress and anxiety associated with a diagnosis of dementia. Therefore ‘how we come across to each other’ (for example the level of listening involved, empathy shown, and time given) is just as important as what is said. Training for staff on effective communication to optimise the benefits of the high impact change model for dementia and delirium is therefore an important consideration for ICSs.
Stakeholders provided practical examples of what good communication looks like in managing people with dementia and delirium at key points on their journey, that illustrate the ideal approach.
On admission to hospital
Set the context that the person will soon be leaving hospital and give time to the person and their care partner to plan discharge, so it can take place as quickly as possible. Ensure consistency in that all professionals (e.g., acute, therapy, social care) are saying and emphasising the same things.
At point of a diagnosis of dementia
Explain the nature of the condition, what the diagnosis means, the likely journey about to commence, the practical support that is available and how to access it. Recognise that people who may not speak English, or have the same cognitive understanding as others will require a nuanced approach to this explanation. Be sensitive to the devastating nature of the diagnosis, listening, acknowledging and responding to questions, concerns and fears. Gauge the person’s readiness to hear the information and respect any preference to ‘live in ignorance’ at that point. Arrange for any post-diagnosis follow up support, at the right pace and time for the person.
At the point of crisis
Fully listen to and repeat back your understanding of the situation. Recognise and acknowledge the stressful or daunting nature of the situation. Ask questions that enable understanding of the wider picture and factors involved. Include the needs of both the care partner and the person in the discussion and assessment of requirements. Consolidate to clarify the immediate risk(s) and actions required in support of both the person and care partner. Explain and agree a simple set of actions or steps to be taken. Repeat and check understanding of these.
In communication with families
Give adequate time to conversations and hold them in a suitable protected space, away from noise. Listen to, acknowledge and respond to questions and concerns and check understanding of answers given. Show empathy and acknowledge the high level of expectations being made of the care partner and the stress and fear that these may incur. Recognise and acknowledge what has already been achieved and provide encouragement. Fully involve the people who know the person best in decision-making and planning via a collaborative, shared approach. Don’t assume a care partner is automatically willing to assume the role; check and show empathy for any limitations and respect these in decision-making and planning.
Another area in which communication is important is between the care partner and the person living with dementia/delirium. Care partners are not naturally skilled in what to say and how to respond to a person living with dementia/delirium. Anxiety and stress on both the part of the care partner and the person living with dementia can also exacerbate tensions. Developing a ‘top tips’ for care partners on what to say and what not to say to a person living with dementia and how to respond to them can be a useful tool for carers, especially where this is developed in conjunction with care partners themselves. Consider including these ‘top tips’ as part of an app for care partners. Additionally they may require support in asking for/ or the team offering respite care (based on local arrangements), recognising that this may need to be paid for.
Supporting resources
The Living with Dementia toolkit (Essex Partnership NHSFT) provides useful frameworks and materials that include top tips and strategies for having a conversation for people with dementia and for friends and family caring for someone with dementia.