Hospices are being called upon to support more people with dementia and their families and carers – through both services they provide and by working in partnership with other care providers in their local communities – a new report launched today by Hospice UK.
An estimated 66,000 people with dementia in England die each year who require end of life care. The number of people who die with dementia is expected to increase substantially in future due to the UK’s rapidly ageing population.
More people are also living for longer with a combination of complex conditions, including dementia. The report entitled 'Hospice-Enabled Dementia Care: the first steps' highlights how, as well as providing care for people with dementia at the end of life, hospices can support these individuals and their families and carers to live well during different stages of the life limiting condition. The wide range of support hospices can provide includes: offering respite options, navigating care needs, facilitating difficult conversations and providing complementary therapies.
Hospice UK’s new report calls for the expansion of “hospice-enabled care” – which involves hospices providing support directly, or teaming up with other care organisations to deliver this. The report highlights how hospices can support people live with dementia through different stages of the condition, as well as at the end of life.
Hospices have in the past faced several barriers to reaching out to people with dementia. They include: low levels of knowledge about dementia among some hospice staff and in some cases weak relationships with other health professionals, such as mental health specialists.
The report recognises existing best practice among a small number of hospices which provide excellent support for people with dementia through a range of innovative schemes. However, it calls for this to become more widespread across the country and provides guidance for hospice staff to develop their skills and capacity around dementia care.
A number of hospices are successfully supporting people to live well with dementia through the care they provide. For example, St Joseph’s Hospice in east London offers support through the Namaste Care programme. This sensory-based model of care has been successful in reducing anxiety and improving psychological wellbeing for people with advanced dementia. It offers simple but highly effective support which can include music, hand massages or use of scents and colours.
Other hospices are taking an active role on education and training. For example, East Cheshire Hospice has teamed up with a leading care home for the pioneering Dementia Exchange Scheme. This involves hospice and care home staff exchanging work environments and swapping knowledge and advice. This has proved mutually beneficial for staff involved and helped them develop important new skills and gain insight into caring for people with dementia approaching the end of life.
In order for hospices to support more people with dementia, the report recommends they adopt the following approach:
- A corporate commitment to engage with the dementia care agenda
- Efforts to establish new partnerships with other care providers
- Creativity in the provision of care and services to meet the specific needs of people with dementia
- Investment in training of staff and volunteers
The new report identifies actions that hospice leaders can take to introduce and develop such an approach. It offers a checklist for hospice boards and senior managers to help them assess their position and progress in supporting people with dementia, their families and carers
Dr Ros Taylor, National Director of Hospice Care, at Hospice UK said:
“There are some excellent examples of hospices providing innovative, high quality care for people with dementia, by supporting individuals and their families through different stages of the condition, as well as at the end of life. There is great potential for expanding this work much further.
“Hospices have a tremendous opportunity to vastly improve the experiences of people with dementia, but they need to do more to reach out to people with this life-limiting condition.
“Partnership working with other care providers and reciprocal learning will be crucial to achieving this. We hope hospice leaders will take action to develop the right skills and relationships and share their expertise more widely to help improve access to palliative and end of life care for people with dementia.”
Supporting people with dementia at the end of life was identified in the final report of the former Commission into the Future of Hospice Care published in 2013 as one of the main challenges facing hospices over the coming decade.
Notes to Editor
- Read the full report.
- The report was funded by the charity Hope for Home which supports older people with dementia and their carers in their own homes.
- Read the final report of the Commission into the Future of Hospice Care.
- Hospice UK is the national charity for hospice care and the only membership body for organisations providing hospice care. We support and champion the work of more than 200 of these organisations across the UK.
- Hospices, and other organisations which provide hospice care, offer vital care for people with terminal or life-limiting conditions and also support their families and carers.
- For further information about hospice care follow us on Twitter@hospiceukPA.
- Get all the latest news from the hospice and palliative care sector, as well as patient stories, on ehospice UK. This service is managed by Hospice UK. You can also follow ehospice news on Twitter at @ehospicenews.
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