This year, Dementia Awareness Week (#DAW2015) will run from 17-23 May. Join us on Tuesday 19th May 8pm BST (click the link to convert to your time zone) for an #OTalk tweetchat hosted by Nichola Duffy (@Nnikki_Duffy).
I’m not where I’m meant to be…
If you had asked me three years ago which clinical area I wanted to specialise in, I would have unequivocally and confidently answered neurology/ headache disorders. Yes I’m one of those annoying people that had a five-year plan! As you can guess from the title of the blog I’m not working in neurology, my five year plan went out of the window when I started working in a pilot post as a community mental health OT working in a memory team (initially within care homes). I promise I’m not trying to convert every OT to work within the memory team (she says with her fingers crossed) but I think I have the best job in the world!
Leven et al. (2011) described the role of OT as ‘one of the most promising psychosocial interventions for those living with dementia and carers’ (p.743)
The journey travelled by each individual living with dementia is just that; individual (unique), even those with the same level of underlying pathology may experience differences in occupational performance (Holthe, Thorsen and Josephsson, 2007). Burns and lliffe (2009) defines dementia as a clinical syndrome that affects memory, disturbances in language, psychological and psychiatric thinking impacting on the ability to perform everyday activities. However a more potent description can be found in the World Health Organisation’s (WHO, 2012) publication ‘Dementia a Public Health Priority’ defining the diagnosis as ‘overwhelming’, not only for those living with a dementia diagnosis but also care givers and families.
As OT’s we have a responsibility to look beyond the neurological impairment and focus on strengths, capabilities and valued occuaptions. With occupational therapists having a specific responsibility to utilise approaches that ‘penetrate the bubble’ as Perrin (1997) described many years ago, to really See The Person living with dementia, not only symptoms.
I’ve also felt that one of the strengths of our professions is described in the WFOT (2010) position statement as ‘listening to the voice’ whether that is the individual, families, caregivers etc. Baldwin (2008) discusses the importance of the narrative, the stories we tell, listen to, reinforce and their ability to empower an individual, stating ‘through our stories we can give voice to or silence others’. Working in a dementia care setting this statement of advocating or ‘giving those a voice’ I believe is at the centre of what I do and I can truly say I’m exactly where I’m meant to be.
Within my trust we have adopted the statement ♯SeeThePerson, so as we approach dementia awareness week it may be fitting to ask ourselves:
- Do we really see the person?
- What skills do occupational therapists have to enable us to look beyond the patient to see the person?
- What are some of the perceived barriers to delivering person centred care?
Nichola Duffy @Nikki_Duffy.
‘I have become a storyteller. Not with jokes or funny stories, although funny things happen to me a lot. But to tell others about living with Alzheimers. To tell people my story, my hopes and my intentions and, more importantly my expectations. Breaking the stereotype of a person with Alzheimers or other dementia as very elderly and in the final stages is very important to me. And it starts by speaking out, one person at a time.’
Jim Mann (2010)
What is dementia?
Barbara, the whole story
Dementia – Briefing 2 – Meaningful Activity: This briefing is aimed at occupational therapy practitioners interested in developing their knowledge and experience of working with older people. Its purpose is to distinguish between dementia, delirium and depression.
COT (2012) Dementia- hOT topics have a comprehensive list of a number of related articles.
Some useful articles/books on person centred care:
Bartlett, R. and O’Connor, D. (2007) ‘From personhood to citizenship: Broadening the lens for dementia practice and research.’ Journal of Aging Studies, 21(2) 107–118. doi: 10.1016/j.jaging.2006.09.002.
Brooker, D. (2007) Person-Centred Dementia Care: Making Services Better. London: Jessica Kingsley Publishers
Clarke A., Hanson E. and Ross H. (2003) ‘Seeing the person behind the patient: enhancing the care of older people using a biographical approach’, Journal of Clinical Nursing, 12(5) pp. 697–706. doi: 10.1046/j.1365-2702.2003.00784.x.
Clissett, P., Porock, D., Harwood, R. and Gladman J. (2013) ‘The challenges of achieving person-centred care in acute hospitals: A qualitative study of people with dementia and their families’, International Journal of Nursing Studies, 50(11) pp.1495-1503. doi: 10.1016/j.ijnurstu.2013.03.001.
Cook, A. (2008) Dementia And Well-Being: Possibilities And Challenges. Edinburgh: Dunedin Academic.
Kitwood, T. (1997) Dementia Reconsidered : The Person Comes First. Buckingham : Open University Press.