When I joined the hospice nine months ago, the world of hospice and palliative care was very new to me. For most of my career I have worked as a mental health nurse, the last 18 years as a community mental health nurse for people over 65.
With this being the first time that an admiral nurse had been appointed in a hospice, I quite literally began with a blank sheet of paper. A daunting task in some respects, but thankfully I came with a pot of ideas and thoughts, having just finished my MSc in Dementia Studies the night before I came into post!
I quickly learnt that the ethos of good hospice care chimed with the principles of good dementia care, seeing the person before the illness and involving and supporting all those around the person who may also be affected by the illness.
Nevertheless, dementia is still associated with fear and stigma, and often seen as a ‘living death’ – almost where we were with cancer over 30 years ago.
Dementia also carries a worry and concern about behaviour changes and how to cope with this.
‘Dementia training’ can mean many things but it is the impact of any training that is most important.
Considering our own perceptions and attitudes and how we can alter our behaviour and interactions to be more responsive to the person with dementia and their family is a good place to start.
The staff at St Cuthbert’s are already highly skilled in communication and dealing with distress. Helping them to feel confident in the care they provide and see they can ‘do dementia’ well is very important.
We have involved staff and volunteers from all departments across the hospice, including catering, HR, family support, estates, development and clinical staff to learn a little more about dementia, through a ‘Dementia Friends’ session and training around behaviour changes.
There is an ongoing project to roll this out to all staff members and we have five members of staff, again from various departments, about to train as ‘Dementia Champions’.
The ripple effect of this aims to embed a compassion and understanding about what it may be like to live with dementia and the impact of this on families. Involving everyone is vital.
Considering the environment
Through my work at the hospice, I have had the privilege of meeting a wonderful gentleman with dementia. He helped us look at the hospice in terms of what we need to do to make the environment more dementia friendly.
If someone is confused or experiencing communication difficulties, life can be very complicated.
Easing the path for them at whatever point we may have contact, in or out of the hospice, will go some way to creating a more positive experience for them.
Specific tools can be used to assess pain and distress in dementia and embedding the principles of life story and ‘This is who I am’ can help us truly understand who people are, what motivates, drives and lifts them and what may upset or distress.
Knowing how someone with dementia dealt with difficult times or how they usually responded to pain can help us to understand people better, particularly if communication is impaired.
Caring for carers
40% of family carers of people with dementia experience depression, anxiety and other significant psychological problems, so the impact on families cannot be underestimated.
Working closely with families is essential. We are all ‘in it’ together, with family carers often the ‘experts’. We need to help to build their resilience and confidence.
A significant part of my work is in the community, reaching out to those affected by advanced dementia. Helping the wider health and social care community see dementia through a palliative lens can give a different perspective on it, and enable discussions around emergency healthcare planning and symptom control.
The hospice expertise can be taken out into the community to reach people who may otherwise have not had this opportunity. Palliative care reminds us dementia is a ‘disease’ of the brain.
As the trajectory of dementia can be over many years, helping people to access the different types of support they need at critical points, often as things change, is also a large part of my role. I need to understand the wider health and social care system – who is providing dementia care? And help family carers to navigate this often ‘rocky road’.
If we, as a hospice can’t help, who can?
Sharron will be speaking at a conference this Friday, hosted by Hospice UK and Hope for Home, which will focus on the hospice response dementia. This event will also see the launch of a new guidance document outlining the first steps hospices can take to meet the dementia challenge.