The prevalence of dementia is rising. Estimated to affect over 800,000 people in the UK, 1 in 3 people over the age of 65 now die with dementia.
Characterised by a progressive decline in multiple areas of function, dementia is associated with complex and palliative care needs equal to those of cancer patients.
Challenges to supporting patients and their families include:
late referral to palliative care services – often only when death is imminent
opportunities for discussion re patient choices/decisions are often missed
the majority of patients wish to die in their own homes but many die in hospital
pain, other symptoms; spiritual and psychological aspects of care may be under recognised and under treated
A new and innovative joint project was started in 2014 to integrate the specialist knowledge and skills of 2 organisations:
Hospice of the Valleys – palliative and end of life care
Alzheimer’s Society – the care of people with dementia
which aims to improve and develop effective palliative and end of life care for people with dementia and their families by working with existing health and social care professionals to:
support patients in their preferred place of care
facilitate an improved understanding of the disease process and the value of early implementation of palliative care
contribute to the campaign to raise public awareness in relation to death and dying
Support/facilitate choice and recognition of the importance of Advance Care Planning.
Outcomes Of the 63 project patients to date:
54% lived in residential and nursing care
43% lived in their own home
3% lived in an inpatient specialist mental health setting.
93% achieved death in existing place of care.
Future plans Formal project evaluation by the Marie Curie Palliative Care Research Centre, Cardiff (MCPCRC) due to be published early 2016.
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