Monday, 31 October 2016

Living in the shadows of dementia care

Dr Julie Watson is the author of our latest research briefing Face-to-Face: Relating to people with dementia until the end of life in care homes. Julie, a registered nurse, is a Research Fellow in the University of Edinburgh’s School of Health in Social Sciences. Next week some of her work features in the exhibition Living with Dementia: Fostering Hope, Challenging Fear, part of the ESRC Festival of Social Science.

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.

Living with dementia
Some of Dr Julie Watson’s work features in Exhibit 5 of the exhibition ‘Beyond words – the language of body and soul’. 

  • 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

1 comment:

  1. Let me briefly tell you that there are multiple forms of dementia - alzheimer’s disease being the most common one that accounts for 40 to 75% of dementia cases and is the sixth leading cause of death in United States. Additionally, dementia and its types have common signs with some variations. Let’s start with the most common signs of dementia most commonly seen in patients at the early stages of the disease. They start experiencing subtle memory loss, mood instability such as immediate occurrences of maniac (laugh) and depression (sadness) episodes, and have trouble with listening and explaining things to other people, communicational obstructions to be exact. They also segregate their selves from social gatherings and unions, face difficulty in performing daily chores and also experience muscle impairment. Additionally, some people fail to converse with other people because they fail to keep up the pace and comparatively take longer to process the coming words and repeat the same question over and over again. Most of the cases showed that, dementia patients start segregating their selves and start living alone because they could not keep up with the lives of normal people. They just are not up for the adaptation to change. In one of the form of dementia, which is Lewy Body dementia, probable signs appear to be sleeplessness. Patients experience insomnia which leads to mood swings. It has been seen that they fail to keep tracks of roads and lose their tracking skills as well. In case of Alzheimer’s, a patient the most common signs are memory loss and forgetfulness. In some cases, it has been observed that people with Alzheimer’s segregate their selves from others. Additionally, they experience complete memory loss and trouble understanding visual images and spatial relationships, lack the judgement skill and a complete withdrawal from work or social activities. One most commonly observed is the forgetfulness and inability to retrace steps. There is another type of dementia called Parkinson’s characterized as uncontrollable movement of body parts such a shaking limbs and fingers. It has been observed that patients experience writing and speech changes, their ability to respond fails badly and they lose posture and balance. One of the common sign is bradykinesia characterized as slow body movement. One thing to keep in mind before labelling someone as a dementia patient is that forgetfulness and memory loss do no really mean a person has dementia because memory loss and forgetfulness are a normal parts of aging. But if any severity has been observed in these signs, a patient definitely requires a professional advice and consultation. There is no cookie approach to cure dementia but if you observe such changings or signs in your loved ones do not take it for granted before it gets too late.
    Reference: What IS Dementia?