Hospitals and Stigma

A report written by our dear friend Terry Pratchett.

Tackling the stigma of dementia is a long-sought aim of agencies working to raise awareness and care for people with the disease. A huge amount of work remains if this goal is to be achieved, and hospitals, which are at the very heart of communities, have an important role in raising awareness and encouraging holistic approaches to drive change.


Many dementia patients say that from the moment they are diagnosed, those around them feel somehow rendered incapable. In reference to his own diagnosis with early onset dementia, the author Terry Pratchett summed up this reaction quite simply: "People get embarrassed, lower their voices and get lost for words."


The reasons for such stigma are multiple, but the consequences almost always the same. As those living with dementia struggle to understand what is happening to them, they can become socially isolated from friends and family who are often just as afraid. Stigma is driven by lack of understanding, and the tendency to avoid issues we do not fully understand is all-too-evident when it comes to dementia.


Most people know little more than that it is a progressive condition, and can be inclined to shun the individual due to their own anxieties. Common misconceptions are, for example, that dementia only affects older people, who may already be viewed as failing physically, and this compounds the negative stereotype.


Dementia can occur at any age – albeit less frequently in younger people – and more than a million people set to be affected by dementia in the UK by 2021. It is encouraging that there is now a sharp focus on improving dementia care in the UK, and the commitment at Westminster-level to establishing "dementia-friendly communities" shows leadership at the highest level.


A truly holistic approach is needed, however, if we are to turn fear into knowledge and educate our communities, so that those with dementia are effectively supported and understood. Hospitals have a clear role in this process.


A "whole hospital" approach must be adopted across England and Wales to educate all staff, from porters to doctors, to embrace dementia care and ensure it is never considered "someone else's speciality". At the Royal United Hospital Bath NHS trust, three specialist dementia co-ordinators have been recruited who work with carers and act as a central point of contact for staff across the hospital who encounter, or are in charge of, patients with dementia.


This relatively straightforward measure has had a demonstrable impact. Carers are reassured that any member of staff who encounters a patient with dementia has adequate levels of training and awareness.

 Dementia champions on each ward also support this, ensuring patients displaying signs of dementia are recognised.


Personalising care is also important, to avoid adding unnecessary stress to what may already be a bewildering hospital visit. The Alzheimer's Society's This is Me document, which offers insight into an individual's routines and habits, is hugely useful in this respect.


Integration between hospitals and external agencies is also key to ensuring a joined-up approach. In Bath, regular meetings of a "dementia steering group", comprising of hospital staff as well as public, private and third sector representatives including the Alzheimer's Society, provide crucial dialogue between the hospital and residents.

Activities where the community immerses itself in the hospital environment are also of great benefit. Music therapy and reminiscence workshops with dementia patients led by locally-based therapists encourage a greater understanding of dementia, as does the "befriending service" where residents, including students at nearby universities, visit dementia patients on the ward.


Getting the environment right is also crucial. Recent refurbishments to make our older people's ward feel more like a home than a hospital, aim to provide acutely ill patients with dementia and their carers with the right practical environment, but with an appropriate level of emotional support too. News of this work has spread across the hospital to encourage others to follow suit. Ensuring clear signage and that clocks are visible to improve orientation, for example, can be adopted on all wards.


Society's reaction to news of the "dementia timebomb" we face has been one of fear, and dementia has become the condition people are afraid of developing above all others. But hospitals lie at the heart of communities and can lead the charge on providing exemplary care for people with dementia, while educating and engaging the community to dispel these fears in the process.


With 25% of people in hospital living with this illness, clinical leads must ensure people with dementia feel well supported, so that their independence can be preserved for as long as possible. There is no reason why patients with dementia that may be in hospital with other issues should not be empowered and have their self-esteem boosted in the process.


Dr Chris Dyer is consultant geriatrician and is leading the dementia project at the Royal United Hospital in Bath



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