An inspiring plenary talk by Professor Annette Leibing at the recent ‘Life with Dementia’ conference at Linkoping University, Sweden, described people who are living well with dementia, able to remain active and connected within their communities, as the ‘heroes’ of dementia. However, Professor Leibing cautioned that we must not forget those who are perhaps not seen as living heroic lives, who remain in the shadows.
People with advanced dementia who live in care homes, and those who care for them, remain in the shadows of dementia care. The daughter of a woman with advanced dementia living in a care home recently described to me her sense of her mother living in a ‘twilight zone’, and the sadness associated with this for her as she struggles to connect with her mum. This is an increasingly common experience for families as the population ages and the number of people with dementia rises dramatically. The experience of families who say ‘this is not my dad’ (Sikes & Hall 2016) while at the same time expecting paid carers to ‘maintain the person within’ (Davies et al 2016) points to the tensions and complexity of relationships in this area of care.
So how do we foster hope and challenge fear among people living with advanced dementia in care homes and those who look after them?
One way might be to re-imagine our relationships – moving away from a focus on language and conversation to other ways we can connect person to person. The recently published briefing paper Face-to-Face: Relating to people with dementia until the end of life in care homes presents findings from a study into how care staff in a care home and people with advance dementia relate to each other, from which we can all learn.
The Primary Palliative Care Research Group at Edinburgh University have just published a commentary on their vision to establish a Care Home Centre for Excellence, a care home where people would choose to come and live, not as a last resort, where they would receive excellent care and where students can learn and research can help us understand how best to live well with dementia until the very end of life (Hockley et al 2016).
Much has been achieved within dementia care over the last 20 years which is to be celebrated. Now is the time to build on that, shining the light into those areas which are still in the shadows.
8-10th November 2016: Living with Dementia: Fostering Hope, Challenging Fear
Edinburgh Centre for Research on the Experience of Dementia (ECRED), as part of the ESRC Festival of Social Science in November are presenting an exhibition of photographs and short films produced with and by people with dementia. This exhibition, ‘Living with Dementia: Fostering Hope, Challenging Fear’ shows many people living well with dementia, challenging the stereotype of them as tragic victims of a disease which takes away the person, and the stigma associated with a diagnosis of dementia, which so often marginalises the lives of those living with dementia.
- Davies, N, Rait, G. Maio, L. & Illife, S. (2016) Family caregivers’ conceptualisations of quality end-of-life care for people with dementia: A qualitative study. Palliative Medicine DO1:10.1177/0269216316673552
- Hockley J, Harrison J, Watson J, Randall M & Murray (2016) Fixing the Broken Image of care homes, could a ‘care home innovation centre’ be the answer? Age and Ageing. DOI: 10.1093/ageing/afw154
- Sikes, P. & Hall, M. (2016) “It was then that I thought ‘whaat? This is not my Dad”: The implications of the ‘still the same person’ narrative for children and young people who have a parent with dementia. Dementia DOI: 10.1177/1471301216637204