How hospices are reaching more people with dementia

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There are over 220 adult, children and young people hospices in the UK proving support for patients and their families in a variety of ways and settings. But how many people do hospices actually reach?

Historically, hospices have been seen to only focus on caring for those with cancer in a hospice or inpatient unit. Indeed, earlier this year Hospice UK published analysis showing that one in four people who require end of life care and their families are not getting the support they need.

The analysis highlighted that people with terminal conditions other than cancer often access hospice care in fewer numbers and later in their illness than those with cancer.

But things are gradually changing. There is now a concerted effort to open up hospice care, to reach more people in more settings including considering the needs of family carers as they care for their loved ones and into their bereavement. Indeed, this is illustrated by thinking of ‘hospice’ as an approach to care (rather than a building or place) which is delivered by health and social care practitioners in different settings (e.g. hospitals, care homes, prisons and home) and by collaborative teams (e.g. hospices, social care, hospital and community teams).

An example of reaching more people by ‘opening up’ hospice care is the estimated 66,000 people in England living and dying with dementia each year. With a rapidly aging population this number is expected to increase substantially in future. We know from recent research that coordinated care from a variety of services enables good end of life care for people with dementia.

So how can hospices support more people living and dying with dementia?

In 2015, in order to help understand the contribution that hospices could make in this area, Hospice UK produced the guidance Hospice Enabled Dementia Care .The resource produced in collaboration with leading organisations and experts of dementia care, identified how people with dementia, their families and carers could be supported by hospices to live and die well.

In addition to this, Hospice UK partnered with the national charity Dementia UK to work collaboratively to support practitioners in all settings to discuss, develop, deliver and evaluate models of care that would reach more people. The Dementia UK/Hospice UK Dementia Community of Practice is now in its third year. It is free to join and open to any practice with an interest in caring for people and their families with dementia.

Further examples of reaching more people living and dying with dementia has been the collaboration with St James Place. This partnership has seen hospices providing direct dementia care and resources – such as dementia information videos from Hospiscare in Devon or the Virtual Dementia Tour from Greenwich and Bexley Hospice.

And a growing number of hospices are leading successful multi-agency partnerships with local NHS trusts and other providers to improve care for people with conditions, such as advanced heart failure , enabling them to benefit from palliative care at a much earlier stage.

Whilst there is much still more to do, the hospice movement is taking steps to extend access to care and reach people in different ways to ensure that everyone gets the support they need at the end of life.

  • Hospice Care Week takes place from 9-15 October and this year will celebrate everyone involved in providing and supporting hospice care. For further information visit Hospice UK’s website.

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