Today I am delighted to host a guest blog from Julie Christie. And, you guessed it, there is another ‘twitter story’ behind this fascinating contribution to the series...
As many of you will know, there are many very interesting and educational ‘Twitter chats’ around different specialist subjects. A bit like ‘Mastermind’ but without the pressure… or indeed the scary, black chair. They each have a #hashtag on Twitter and you can tune in and take part in the ones that appeal to you.
There are several good regular chats about dementia – the best known probably being #Alzchat – search for the hashtag and you will find it.
I was particularly interested in two aspects. Firstly, the question of resilience and assets-based approaches, as these are central to the values and beliefs of #dementiachallengers. Secondly, I was keen to know more about ethical research methods for studies involving people living with dementia – the central issue of informed consent, particularly on an on-going basis as people’s conditions change.
Julie is studying a PHD at the University of Stirling. I know that Stirling is a home of innovation and original thinking, having published the very first blog (by Antonia Servera-Higgins) in our ‘in my shoes’ dementia series. I was delighted when Julie agreed to tell us more…
— Julie Christie (@juliechristie1) March 18, 2013
Research Involving People with Dementia
The current interest in the quality of care that older receive is very relevant to the subject of research and dementia. I often read about the importance of measuring outcomes but who determines what these outcomes are, and what methods are used to measure them? How can we find out about the experience of having dementia or being a recipient of care if we don’t speak to people with dementia directly? The question at the heart of this matter is “is there still a person present to engage with, to include and to learn from”.
So, the starting point for research in this area is simply that people with dementia are not objects for study but people with views and opinions.
I have previously written about what I believe to be the essential elements of engaging people with dementia in research in a meaningful way (see Christie, 2007). These elements include individual communication methods built around each participant, starting with information about the research itself; consent processes that can be revisited through the life of the project; using legal safeguards to facilitate accountable inclusion not to excuse exclusion; different models of engagement to suit individual lifestyles; and testing the water on using the word “dementia”.
My own area of study concerns the concept of resilience in the context of ageing with dementia. There is a particular focus on the views of older people with dementia, and social workers on definitions of resilience. What is resilience? Resilience is the ability to overcome adversity and challenge. Why is this important? Well people with dementia are generally assumed to be vulnerable by others. The concept of resilience challenges professionals as it turns the discussion from one of need and risk, to one of strengths and assets. The question then becomes “What can and do people with dementia do to help themselves, and how can we facilitate this?” The challenge then becomes how to recognise resilience when a person with dementia finds it hard to communicate with others due to the impact of the condition.
The implications for social work practice of employing resilience models when working with older people with dementia are interesting. Social Workers have a duty of care and are expected to make decisions about risk and protection. They need to be able to make accurate judgements about individual situations. I hope that this research can develop evidence –based practice around strengths and assets based approaches, that have been informed by people with dementia themselves and not what other people think. It is a challenge engaging with people in a meaningful way that demonstrates respect and accountability. Deep listening to personal narratives takes time and is required to really hear personal stories and in turn represent them truthfully. I found reference to the values framework developed by Cox et al (1998) very helpful. This is a framework that I have recommended social workers use in their day to day practice .This framework identifies five core values that should be employed when working with people who have dementia and are:-
- Maximising personal control
- Enabling choice
- Respecting dignity
- Preserving continuity
- Promoting equity
I have had the privilege of working closely with many people with dementia over the life of my research. The stories that have been shared with me are rich, personal and offer insights into the experience of living with the condition. I feel a great deal of responsibility to represent these stories to a wider audience, to facilitate change. The power of a story…starts simply with a storyteller and a listener. What role will you play?
Christie, J 2007. Ethics, Evaluation and Dementia. In: Innes, A and McCabe, L. Evaluation in Dementia Care. London: Jessica Kingsley.
Cox, S, Anderson, I, Dick, S and Elgar, J. 1998. The person, the community and dementia. Developing a value framework. Stirling: Dementia Development Centre, University of Stirling.
Julie is a psychiatric nurse and social worker by qualification and has a Masters Degree in Dementia studies. Currently employed as a Social Work Manager, Dementia Consultant and undertaking a PhD on the subject of resilience, dementia and social work practice. Julie has published work in the subjects of ethics, acute hospital care and resilience concerning people with dementia. Julie cared for her gran who had dementia and has now sadly passed away.