St Giles Hospice, in the West Midlands of England, provides palliative care for people with advanced cancer, motor neurone disease, and other terminal illnesses. With a long tradition of working in partnership with other like-minded organisations to provide supportive care, community engagement activities and education, the hospice is now gaining a reputation for its collaborative work in dementia care.
Dr Emma Hodges DBA, Chief Executive of St Giles Hospice, and Honorary Lecturer, School of Law, Keele University, UK, made the palliative care challenge of dementia the focus for her doctoral research…
In 2012, when David Cameron the then UK Prime Minister launched his Dementia Challenge, I naively assumed that hospices were already part of the solution. I had joined St Giles Hospice at the end of 2009 and at that time didn’t really understand the hospice movement’s historical narrative being dominated by care for people with cancer. I held a strategy meeting to ask ‘what are we doing about the demographic changes and the prevalence of people dying with or from dementia?’ I realised quite quickly from these discussions that dementia just wasn’t (and still isn’t) in the DNA of hospices. Care for people with cancer has grown up separately from that related to dementia. However, it was also clear to me that hospices could not ignore this challenge; in fact, this became the focus for my doctoral research.
Prior to commencing my study, St Giles had been involved in pilots and services relating to care for people with dementia (Hurt & Reeves, 2019, Hodges, 2015). However these hadn’t really shifted the narrative, and they were operating in many ways on the fringes of specialist palliative care provision. They did little to challenge the acceptability of hospice care for people with dementia; i.e. what type of care, delivered where and by whom, and I wanted to explore this in more detail. The research was a mixed methods study based around a theoretical framework of organisational theory. The study included a survey of all independent, charitable hospices (48% return, n = 83), semi-structured interviews (n=11) and a focus group. The study focused on views and experiences of people within hospices and a small number of national leaders and explored organisational factors influencing the development of services for people with dementia (Hodges, 2019).
There are several challenges to hospice care for people with dementia including financial constraints, service capacity and workforce capability. Despite these, my research highlighted an almost unanimous agreement (48 per cent survey return rate from a total population of 171 independent adult hospices) that hospices felt they did have a role in supporting people with dementia, however there were mixed views as to what that contribution might be.
There are unanswered questions about whether the care for people with dementia is ‘specialist’ or ‘generalist’(Sampson, et al., 2011, Van der Steen, 2013),and for some hospice healthcare professionals that matters. Whilst I had anticipated themes relating to workforce issues would emerge from the research, I hadn’t expected the depth of feeling from some participants regarding professional identity. My research, unfortunately, highlighted some arguably stereotypical and prejudicial thinking when it comes to caring for people with dementia. Where change had happened, there was an internal champion who was being supported to innovate and create partnerships to support people dying with dementia.
The research concluded that organisational change at movement level had not achieved a shift in narrative, not only for dementia but also more broadly for hospices. That the change model was not complete, leaving out key elements that could drive a movement wide shift (Greenwood, et al., 2002, Hodges & Read, 2018). In response to dementia, the research concluded that a movement led shift was unlikely. Services might continue to grow bottom up within organisations by internal change agents; however, there needed to be further research around specialist palliative care, dementia and professional identity if meaningful, impactful change was to take place at scale. Yet, the deficits in care are happening now.
At St Giles Hospice, we have developed a strategic approach to dementia through partnerships and networks alongside some specific areas of service delivery. We have a long way to go before I feel that we’ve ‘done our bit’. Our partnership with Hammond Care, an Australian and UK-based charity, is starting to create new conversations and opportunities – early days with some definite progress (HammondCare, 2019).
Personally, I want to undertake further research into the professional identity of specialist palliative care practitioners. I also want to contribute to better models and outcomes of organisational change.
I remain challenged by the fear and concern of some hospice staff. Do we change the narrative and talk about ‘sensory and cognitive symptoms’ regardless of diagnosis as these are not unfamiliar to many traditional hospice patients and ignore the ‘D’ for dementia word? This might be more acceptable for some, but will this reflect the prevalence of dementia in comparison to other diseases and the urgency needed to improve palliative and end-of-life care for this growing population – or can we do both?
Greenwood R, Suddaby R & Hinings C. Theorizing Change: The Role of Professional Associations in the Transformation of Institutionalised Fields. Academy of Management 2002; 45(1), pp. 58-80.
HammondCare, 2019. Developing best practice palliative care for people with dementia. [Online]
Available at: https://www.hammond.com.au/about/news/developing-best-practice-palliative-care-for-people-with-dementia (Accessed 5th Dec 2019).
Hodges E. Developing hospice services for people living with dementia. e-hospice,2015.
Hodges E. A mixed methods study exploring organisational factors influencing the development of services for people with dementia in English hospices, s.l.; Keele University, 2019.
Hodges E. Dementia and Palliative Care – The Art of the Possible v the Reality of the Probable. Liverpool, 2019, Hospice UK.
Hodges E & Read S. How might organisational institutionalism support the challenges of the modern hospice? The International Journal of Health Planning and Management 2018; 33(4), pp. 768-774.
Hurt M & Reeves H. Improving Dementia Care in Walsall. London, 2019. Government Events.
Sampson EL, Burns A & Richards M. Improving end of life care for people with dementia. The British Journal of Psychiatry 2011; 199(5), pp. 357-359.
Van der Steen, J. e. a. White paper defining optimal palliative care in older people with dementia: a delphi study with recommendations from the European Association for Palliative Care. Palliative Medicine 2013; 28(3), pp. 197-209.
Next week, Emily Pardoe-Billings, a Dementia Advisor for St Giles Hospice, describes her experience of working with care homes in Walsall to provide a partnership support service.
- St Giles Hospice.
- Contact Dr Emma Hodges by email.
- Follow Emma on Twitter @CEOStGiles
- Read more posts on dementia on the EAPC blog.