In this blog post, the Principal Investigator of this research project, Dr Rene Wiedner, shares his views about the importance of examining communication between the people that provide dementia care-related services and people living with dementia, as well as their carers.
How can we* best support people living with dementia and their informal carers? Dementia care can be described as a “wicked problem”: it is complex; there is no simple solution; addressing it requires efforts from many different stakeholders (including local and national governments, communities, health and social care professionals, pharmaceutical companies, etc.) and it therefore has to be tackled from multiple perspectives. For instance, we need to:
- Find ways of preventing the disease
- Combat stigma around dementia
- Make sure people are diagnosed early
- Develop and provide access to medication (to limit progression; treat symptoms; and ultimately treat underlying causes)
- Provide accessible resources to help people living with dementia and their carers manage their ‘dementia journey’
- Provide accessible (emergency and non-emergency health and social care-related) support services to help people living with dementia and their carers manage their ‘dementia journey’
And we need to do a lot of other things, including engaging in activities to support all of the above.
Helping make sense through excellent communication
Importantly, in addition to providing diagnoses, medication, support services and information, we need to help people make sense of their diagnosis and situation, and we need to help them understand what services and resources are available to help them, as well as how and when to access them when needed. In other words, simply making resources and services available is not enough. Communication about potentially helpful resources and services needs to be clear, accurate, consistent, respectful, emotionally supportive and sensitive, and connect directly with a person’s particular situation. As we all know, just one bad experience of interacting with a service (or not being able to connect with it) is often enough to keep us from engaging with it again; and even well-minded attempts to inform can have unintended consequences, such as overwhelming the user with information. Unfortunately, many people who are caring for someone with dementia simply give up trying to get support because they feel lost in a maze of services. Getting communication right in health and social care can make a big difference in terms of improving health and wellbeing outcomes for patients, as several studies have shown (see, for instance, here, here, and here).
While not a communication expert myself, I studied certain aspects of the implementation of large-scale NHS reforms about a decade ago and found that even the best resourced systems can break down with bad or insufficient communication and that some poorly resourced systems can be made to work well if communication practices are excellent. Some might think that communication is trivial, but the nuances of what makes communication excellent in a particular situation are usually not systematically analysed, written down and shared. Excellent communication means listening, as well as providing tailored information using appropriate channels; it means developing and showing empathy; it means paying attention to what is not said.
Without dedicated efforts, and despite individuals’ best intentions, communication practices can be variable, inconsistent and confusing. Faced with increasing demands and time pressure, those providing (or referring to) services or information rarely get the time to study and reflect on their own and others’ communication practices, let alone share these within and across organizations. If we want to improve a complex health and social care system of services for people living with dementia and their carers, we should help services across the dementia care system identify and implement excellent communication. Apart from bringing to light what excellent communication looks like, such an exercise can also reveal the barriers to excellent communication that need to be addressed within and across organizations: What is preventing excellent communication? What can be done to break down these barriers?
Studying communication across the dementia care system
Communication concerning dementia care can be very challenging, not least due to the continued existence of stigma associated with dementia, the many different services involved (across health and social care), and the stress involved in looking after someone who may need full-time attention, who behaves increasingly erratically, and who is not able to remember information. The good news is that, although communication is specific to each situation, those caring for someone living with dementia, as well as health and social care professionals involved in aspects of dementia care, already have a feel for what excellent communication in the context of dementia care looks like through their own personal experiences. Excellent communication already exists: we just need to reveal it and make sure it is adopted widely. And that is precisely what we intend to do with our research project going forward.
Dr Rene Wiedner
Associate Professor of Organization Theory
University of Warwick
* By “we” I mean all of us. Inspired by Ron Heifetz’s and Keith Grint’s theories of leadership, I am convinced that looking for others to solve our problems results in more problems because we will invariably be disappointed. Everyone can and should take some responsibility for tackling wicked problems, although this does not mean that everyone is equally able and responsible.
