Background NICE guidance (NG97) recommends we offer early and ongoing opportunities for people living with dementia and their carers to discuss the benefits of planning ahead and preferences regarding their care. A previous hospice audit demonstrated small numbers of referrals for people with dementia. These referrals tended to come late, when disease was advanced. This re-audit aimed to describe how people with dementia are benefitting from our hospice services and identify areas for improvement.
Methods Retrospective review of electronic records for all patients with a dementia diagnosis referred between April 2017 and April 2018.
Results 5% (56/1154) of all referrals were for people with dementia.
66% (37/56) were referred for end of life care.
63% (35/56) were nursing home residents.
None were admitted to the inpatient unit.
None had capacity to discuss Advance Care Planning at time of referral.
41% (23/56) were discharged from services; after either telephone advice 65% (15/23) or a home visit 35% (8/23).
100% had a DNACPR status.
36% (20/56) lacked both documented Preferred Place of Care and Preferred Place of Death.
The median time between referral and death was 13 days.
Conclusions People with dementia make up a small percentage of referrals to our hospice. The referrals are coming late in the course of illness, at a time when patients are approaching death and lack capacity to make decisions about their care. Early involvement of specialist palliative care services could promote opportunities for advance care planning and improved patient care. With our ageing population, focus on integration between services and improving accessibility for non-malignant life limiting illnesses such as dementia is increasingly important. We have recently appointed an ‘Admiral Nurse’ with the aim of building closer relations with local dementia services.
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