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Trevor Adams

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Living Well with Dementia: Developing person and relationship centred skills

Trevor Adams

Division of Health and Social care

Faculty of Health and Medical Sciences,

University of Surrey, Guildford. UK. 

 

My project is concerned with developing learning materials that will help health and social care staff who work alongside people with dementia. My aim is to make these materials freely available on YouTube and allow maximum accessibility. I first became interested in dementia care when I was training as a mental health nurse. Just before I qualified, the Senior Nurse asked me what area I wanted to go into when I had qualified. He was shocked when I said I wanted to work with people who had dementia and imagined I wanted to work in 'acute admissions' or perhaps, psychotherapy. Dementia care was looked down at in mental hospitals and was considered only something nurses should do if they were not good enough to work in other settings.

I enjoyed working with people who had dementia, though it was not only physically demanding, but also emotionally demanding. I later came to see this as 'emotional labour' and realised that there were emotional stresses that effect staff who are in close therapeutic engagement with people who have dementia. These stresses include dealing with incontinence, working with people who are mentally impaired, and having to accept resistance. I realised that many nurses deal with these stressors by distancing themselves from clients and that often leads to people with dementia being treated like objects and being depersonalised. In rare cases, depersonalisation can lead to the physical abuse of people with dementia. This is a very rare occurrence, but the point is that staff working with people who have dementia have needs and that it is in the interests of people with dementia and their carers that these needs are successfully addressed.  

After working for a number of years in dementia care nursing, I wrote an article for a competition in the 'Nursing Times'. The article was called 'Dementia is a Family Affair' and was about the experience of family's looking after relatives with dementia and how mental health nurses might help them. The article won 3rd prize and I was invited to present the paper at a conference in London. I told my mother and she was delighted. l did not know at the time, that less than a year later she would have dementia herself at 65. I found it really difficult to come to terms with my mother's dementia; she quickly went into a nursing home and died after 5 years later. I realised that dementia really was a family affair and that in a very real way, the whole family suffers from dementia.  

Over the last 30 years great changes have occurred in dementia care, not only is skilled care of people with dementia very much in demand, it is one of the most innovative and dynamic areas of care. While progressive practice in dementia care exists in many homes, hospitals and the community, it is probably the case that there are many places where poor practice occurs. There is therefore, an urgent need to educate and train staff to work alongside people with dementia, and given the demographic and epidemiological changes that are expected, this need is likely to grow and a lot of people will need to be reached.  

At the University of Surrey, I teach various areas within nursing, though I specialise in dementia care.  I lead various modules on dementia care, supervise dissertations, and undertake practice development projects. I have written books, chapters and papers on dementia care.  This work has mainly been within a Kitwood's person-centred approach towards dementia care, though it has also sought to recognise and address the needs of other people who are affected. This approach is called 'relationship centred care' and builds on Kitwood's initial work by highlighting not only the person with dementia but also the family members and care staff. The Fellowship recognises the importance of this 'dementia care triad' by developing learning materials designed to promote the well-being of the person with dementia, the family carers, and formal carers such as nurses and care staff staff. It also argues that various 'social practices' that is what people say and do affect the wellbeing of each participant within the dementia care triad. The aim of teaching materials is therefore to show dementia care workers what they should do and say to maintain the wellbeing of each participant within the dementia care triad, including their own wellbeing.          

The urgent need for the availability of more training in dementia care is now fully recognised. Objective 13, of the recent national strategy for dementia, 'Living well with Dementia' (DH 2009) commends the development of 'An informed and effective workforce for people with dementia'. In June 2009, this was reinforced by the All-Parliamentary Committee on Dementia Report, 'Prepared to Care: Challenging the Dementia Skills Gap' that heard,  

 

'The social care workforce has a very limited knowledge of dementia and is not ready to provide high quality dementia care' (page xi).

 

This finding parallels important (and worrying!) findings that professional training such as nurse training/education  often contains little that is specifically concerned with dementia care. Pulsford et al (2006) found that:

 

'Coverage of dementia within mental health nursing programmes is variable, and may be related to the presence of an experienced and committed lecturer in the HEI [Higher Education Institution].'

 

and,

 

'Coverage of dementia on adult branch programmes is limited, and sometimes non-existent, despite reported deficits in the ability of general nurses to effectively with people with dementia'.   

 

 

There are few training materials available to help students gain skills underpinned by either person-centred or relationship centred care. These training materials are urgently needed and will promote learning about how to work alongside people with dementia in a number of contexts. For example, it has been found that the provision of education and training in dementia care in many Universities is slight and dependent on whether there is staff interest and expertise. It is hoped that the teaching materials that will arise from my Fellowship will help address this situation. The learning materials will comprise: (1) written materials, and (b) five 20 minute films that will be uploaded to YouTube. The written materials will outline the ideas upon which the skills are based, offer a summary of each film, and give questions that will enhance learning. Each film will outline underpinning theory and show how skills should be delivered. It is envisaged that each film will contain, people with dementia, family carers and care staff, as their stories and experience have particular impact and authority on learners.

 

 

The sets of written materials/films will comprise:

  • Key ideas: person-centred dementia care and relationship approaches.

  • Listening and talking to people with dementia.

  • Working alongside family carers to people with dementia.

  • Working alongside people with dementia and their family members.

  • Addressing the emotional needs of staff within dementia care. 

 

 

The written materials/films initially will be evaluated by people with dementia, family members and care staff. Following the evaluation and uploading on YouTube, the materials/films will be evaluated by teachers and students in teaching environments and clinical placements. If you would like to know more about this Project, do contact me on T.Adams@surrey.ac.uk

 

 

Bibliography 

 

Adams, T. (2008) Dementia Care Nursing. Palgrave Macmillan, Basingstoke.

 

Kitwood, T. (1997) Dementia Reconsidered. Open University Press, Buckingham.

 

Pulsford, D. Hope, K. and Thompson, F. R. (2007) Higher Educational Provision for professionals working with people with dementia.: a scoping excercise. Nursing Education To-day 27, 1, pp. 5-13.  

 

 

Powerpoint Presentation: University of Brighton July 2009

 

 

 

 

 

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