End of life care needs of people with dementia Presentation to - - PowerPoint PPT Presentation

End of life care needs of people with dementia

Presentation to Cross Party Group on Dementia Monica Reardon, 13th June 2017

Death trajectories

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Barriers to access

• People with dementia

don’t “fit” into the palliative care system

• Healthcare professionals

not recognising the need for palliative care

• Barriers between health

and social care

• Lack of diagnosis and

support

• Access to and suitability
• f inpatient hospice care

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Planning for death

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• Earlier discussions of the terminal nature of

dementia and appropriate support to plan for this can allow people to have more control

• Advanced care planning and advanced decisions

will make the final stages of dementia better for everyone and improve the chances of a good death for the person with dementia

• Barriers—knowledge of the Mental Capacity Act
• Who discusses advanced care planning and when—

what support do they need?

Carers

• Access to respite

services

• Patient concerns for

carers

• Bereavement support –

partnerships with Cruse

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“We don’t want them [our carers] to worry about how we are being treated, we want them to know we are being treated well and that makes them feel better themselves and they don’t become ill over it.” “It takes time to adjust. 24 hour living with somebody, caring for somebody to nothing…They’ve lost their friends, their hobbies, they need time to adjust and get back into the world.”

Assisted dying

• This theme has emerged

in focus groups

• Recommendation for this

to be explored further in terms of how prevalent it is as a barrier to accessing care

• Marie Curie’s ethical

statement

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“I’d like to end my life when I choose, not be cared for until my body says no. When my mind says enough, it’s enough.” “I think that I wouldn’t want my husband to get prosecuted for something I wanted, that would stop me from getting in touch [with Marie Curie] because I don’t want him or my daughter to. It’s my decision; it’s something that I want to do.”

References

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Marie Curie and the Alzheimer’s Society. 2015. Living and dying with dementia in Wales: barriers to care. Care Quality Commission. 2016. A different ending: Addressing inequalities in end

• f life care, overview report.

Cruse Bereavement Care, Wales. https://www.cruse.org.uk/wales/dementia Marie Curie. Ethical statements, care and research. https://www.mariecurie.org.uk/who/plans-reports-policies/ethical-statements/care- research