Dementia care is an increasingly important strategic consideration for palliative and end of life care providers, including hospices.
Leaders of hospices will want to think carefully about whether they extend care to people with dementia, their families and carers for a whole variety of reasons; including anticipated changes in population size, age and related morbidity and mortality, as well as the growing awareness of the poor quality of care at the end of life for many people with dementia.
Also, the interest of other health and social care providers and carers in seeking help from experts in hospice care about how to support people at the end of life with dementia is one that hospices will find increasingly hard to ignore.
Many of these drivers already exist and yet the majority of hospices do relatively little to reach out and support people with dementia, their families and carers.
Some hospices are understandably anxious about the level of need and also whether they are skilled sufficiently to respond. Many are concerned about the implications on resources, which are already increasingly strapped. Some have simply not really considered the opportunities to extend care to people with dementia in any serious way to date, or have not yet engaged their governing bodies in discussion about taking this agenda forward as a strategic priority.
Hospice enabled dementia care
In order to reassure hospices that they have much to offer people living with dementia and their families, and to suggest some ‘first steps’, Hospice UK has developed new guidance for hospices.
This guidance suggests that the best way for hospices to proceed is to adopt a facilitative role, working in partnership with their local community and care providers to ensure people affected by dementia have access to the necessary care and support wherever they live and whenever they need it. They have termed this “hospice enabled dementia care.”
While hospices may be unclear about what this would look like in practice, there is well-developed knowledge within dementia care about what constitutes high-quality care for people with this diagnosis, their families and carers.
Hospices are well placed to respond, and indeed do much of what is required by those affected by dementia – including their focus and expertise around death, dying and loss. As well as their expertise, flexibility and timeliness is their interest in the individual needs of patients and those close to them.
Their history of serving as pioneers and innovators will enable them to do the necessary work of developing and refining new models of end of life care to meet the specific needs and preferences of people affected by a diagnosis of dementia.
Additionally, their interest in working collaboratively, and in educating and training others, positions them well within the local health and social care context and their local communities to work in a facilitative way to support the efforts of others.
The new publication identifies some key characteristics that hospices are advised to adopt if they are to provide effective end of life care to people affected by a diagnosis of dementia. They include:
- a corporate commitment to reach out to people affected by dementia
- a collaborative approach to the development of services and skills in response to the needs of people affected by a diagnosis of dementia
- a creative approach to the adaption of existing models of care to meet new needs and preferences
- an evidence based care approach to care and the care environment
- investment in the development and support of its workforce (paid and volunteers).
Detail of each of these points are outlined as part of a checklist, along with a list of resources and useful references that hospices may wish to access to guide their work locally to develop new services and partnerships.
Friday’s launch comprised a rich mix of dramatic illustration, presentations and drama highlighting the challenges, pain and loss faced by people with dementia. It made a strong case for hospices’ support in the future.
For many there it changed their position significantly from a position of enquiry focused on “should we be involved in dementia care?” to “how do we get going?” The very question is a good start.