Caring for people with end-stage dementia

Abstract

This article considers the role of palliative care in the management of patients with dementia. It aims to broaden the knowledge of nurses providing general care as well as specialist palliative and end of life care to patients with dementia in all settings. The article helps nurses to identify the characteristics of end-stage dementia and meet the associated challenges that this diagnosis poses. Nurses should then be in a better position to recognise and support patients and their families and ensure that palliative care is included in care planning for this group of patients.

A systematic literature review on nurses’ and health care support workers’ experiences of caring for people with dementia on orthopaedic wards

“…Evidence highlights that most staff in acute settings have little or no training in the care of older people to equip them to care for patients with dementia (Eriksson & Saveman , Cunningham & McWilliam , Birch & Draper , Birch & Stokoe , Clissett et al . ).…”

Challenges in Advanced Dementia

“…In Australia, the provision of quality care at the end of life must be available for all people regardless of location, age, income, diagnosis and prognosis, social and cultural background (Palliative Care Australia[PCA], 2008). The Australian view expressed resonates also with the UK, USA and many other countries (Birch & Stokoe, 2010). Research provides evidence that the symptoms experienced by a person dying are similar regardless of the underlying pathology (Sampson, 2009).…”

“…This evidence suggests the broadening of palliative care to include all life limiting illnesses in practice is warranted. Dementia is one of those chronic life limiting illnesses now seen as benefiting from the application of palliative care principles (Birch & Stokoe, 2010;Chang et al, 2009). Escalation of numbers of people dying worldwide from dementia also means a heightened interest in palliative care in this context (Birch & Stokoe, 2010;Sampson.…”

“…Worldwide advanced dementia is an increasingly burdensome health issue. People with advanced dementia have substantial care needs at the end of their life (Birch & Stokoe, 2010). The Alzheimer's Disease International report (2010) stated there were 35.6 million people living with dementia.…”

Generation of a function affect model for residents with advanced dementia

“…It is characterized by nonambulation, incontinence, loss of speech, and total care dependency (Volicer, 2001). Individuals living with dementia have substantial care needs that exponentially increase as they progress towards end-stage (Birch & Stokoe, 2010) requiring complete care 24 hours a day, 7 days a week. This care burden challenges the resources of care providers (Andrews-Hall, Howe, & Robinson, 2007;Wimo, Jönsson, Bond, Prince, & Winblad, 2013), which may lead to residents with advanced dementia receiving poor end-of-life care, with inadequate pain control, limited access to palliative care (Karacsony, Chang, Johnson, Good, & Edenborough, 2015), and substandard care (Di Giulio et al, 2008).…”