In November 2013 Help the Hospices, in collaboration with Hope for Home, launched a one-year project to focus on how hospices could extend their care to people affected with advanced dementia and also to their families and carers.
The degree to which hospices have already responded to this agenda or plan to do so is highly variable.
Questions remain for most hospices about what their rightful role should be, which of their services are appropriate to respond to the needs of people with dementia and what skills they need to develop in order to deliver a high quality service to such users.
Fundamental to the project was gathering intelligence regarding current practice in UK hospices in relation to dementia care. The results of the survey were encouraging in their demonstration of how hospices are engaging in varied ways with people with dementia. There was also a clear recognition that staff wish to develop their skills, knowledge and confidence in caring for people with dementia and their families.
There are many different ways and opportunities for hospice staff to do this. Some hospices are already undertaking changes to their establishment to increase skills acquisition or working in partnership with their local dementia experts to enhance their skills and practice.
There are dementia-specific development opportunities available for different levels of staff via organisations such as Skills for Health, Skills for Care and NHS England. Higher Education Institutes across the UK also offer educational and development opportunities – ranging from undergraduate to postgraduate to stand-alone dementia-specific study days. A range of topics are available including dementia awareness and palliative and end of life care and some are available on a taught or distance learning basis (see box-out).
Hospices who have embraced dementia and engaged with local and national experts are now utilising some of the dementia-specific assessment tools care such as:
- Disability Distress Assessment Tool (DisDAT) – a measure of distress and pain
- Neuropsychiatric Inventory (NPI) – an assessment of behaviour
- Pain Assessment In Advanced Dementia Scale (PAIN-AD) – pain assessment tool specific to advanced dementia
- THIS IS ME – a booklet to capture details of person with dementia to support care in all contexts and decisions made in best interests
- Modified Crichton Behaviour Scale – which measures level of dependence.
Hospices are also utilising the Namaste model of End of Life Care in Dementia.
These validated tools and models of care are available to all clinicians and can be used by hospice to support best practice in symptom assessment, treatment and management of people with dementia. Carer specific tools such as the Carer Support Needs at End of Life (CSNAT) are also available and being used by some hospices to support best practice with family carers.
Following a Delphi study and consultations with numerous experts in the fields of palliative care and dementia, the European Association of Palliative Care (EAPC) has published guidelines for palliative and end of life care in older people with dementia. These guidelines consist of eleven very detailed domains of palliative and end of life care considered applicable to older people and dementia. A range of areas are covered which include advanced care planning, applicable tools, education and development of the workforce and healthcare teams.
These guidelines are useful for considering and planning services to support people with dementia and their carers. The EAPC guidelines are applicable across contexts and environments. Help the Hospices recommend they are used by hospice as a guide to help inform and support the development and introduction of best practice in hospice enabled dementia care.
A key output of the Help the Hospices/Hope for Home project will be to provide a comprehensive resource to guide staff education, skills development and use of appropriate patient and carer assessment tools.
To find out more about the project or for information about hospice enabled dementia care, you can contact Dr Jacqueline Crowther at firstname.lastname@example.org