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Being Mindful Meeting the needs of people with dementia and their carers at the end of life Sandra Hamblin Jennifer Vinc

Being Mindful Meeting the needs of people with dementia and their carers at the end of life Sandra Hamblin Jennifer Vincent. Is dementia a terminal illness?. Dementia patients often receive poor end of life care – why?. Dementia is a terminal illness So why do we find it difficult?

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Being Mindful Meeting the needs of people with dementia and their carers at the end of life Sandra Hamblin Jennifer Vinc

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  1. Being Mindful Meeting the needs of people with dementia and their carers at the end of life Sandra Hamblin Jennifer Vincent

  2. Is dementia a terminal illness?

  3. Dementia patients often receive poor end of life care – why?

  4. Dementia is a terminal illness • So why do we find it difficult? • Health care professionals and family members have difficulty in viewing dementia as a terminal illness (Sachs et al 2004) • Slow, progressive disease, length of survival 7-12 years (National Dementia Strategy 2008) • Difficulty predicting when people are deteriorating and entering the terminal phase of their dementia illness. Symptoms go unrecognised as patients lose the ability to communicate (Scott 2008) • Myths that dementia patients do not experience pain or other distressing symptoms (Lane et al 2003)

  5. Definition of Palliative care (Addington-HallHigginson 2001) • ‘The Palliative care approach’ • A Focus on quality of life, including good symptom management. • A Holistic, Person centered approach, taking into consideration an individuals pas and present experiences. • Care and support for person loved ones/care givers. • Choices. • Open and sensitive communication.

  6. National Dementia Strategy 2008 The Government's 5-year plan for improving health and social care services in England for everyone with dementia and their carers. Objective 12 - improve end of life care for people with dementia. This states that people with dementia will be involved in planning end of life care. Services will consider people with dementia when planning local end of life service.

  7. Where are we now? In Norfolk we started end of life care for patients with dementia workshops (2008) The workshop was delivered by Sandra and Jenny together with Age UK and the Alzheimer's Society. The target group for the workshops were and are: Community Staff Community Hospitals Specialist Palliative Care Service Care Homes Social Service staff

  8. The focus of the workshops: Understanding of palliative/end of life care Understanding dementia, types of dementia The effects on the family Communication Pabulum Blue Book & Memory Book The three National End of Life Tools Symptom control Grief and bereavement

  9. How can you change things?

  10. The workshops have: • Raised awareness that dementia is a terminal illness • Shown that dementia patients are unique but with similar needs at end of life • Shown that using a person centered approach knowing a person’s past and present can impact on patient care • Demonstrated how utilising the 3 end of life tools (GSF, PPoC and LCP) can have positive out comes for patient and carers

  11. How can we support you?

  12. Best quality care should be throughout the whole patient journey not Just end of life. Its is about living well and helping people to do this until they die

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