The extended palliative phase of dementia – An integrative literature review

Abstract

This article presents an integrative literature review of the experience of dementia care associated with the extended palliative phase of dementia. The aim was to highlight how dementia is defined in the literature and describe what is known about the symptomatology and management of advanced dementia regarding the needs and preferences of the person with dementia and their family carer/s. There was no consistent definition of advanced dementia. The extended palliative phase was generally synonymous with end-of-life care. Advanced care planning is purported to enable professionals to work together with people with dementia and their families. A lack of understanding of palliative care among frontline practitioners was related to a dearth of educational opportunities in advanced dementia care. There are few robust concepts and theories that embrace living the best life possible during the later stages of dementia. These findings informed our subsequent work around the concept, 'Dementia Palliare'.

The experience of psychological distress in family caregivers of people with dementia: A cross-sectional study

“…Nurses need consistent information on dementia and palliative care targeted at people with advanced dementia. Quality interventions are extremely relevant and should involve the family caregivers in clinical decision‐making …”

The relationship between frailty, functional dependence, and healthcare needs among community‐dwelling people with moderate to severe dementia

“…Evidence has shown that planning for advanced dementia is often not undertaken (Holmerova et al, ; Tolson et al, ), due to a lack of consistent information. A comprehensive assessment of the healthcare needs is indispensable to decisions related to the provision of quality care.…”

“…Severe frailty and unmet needs can point out a singular opportunity for palliative care interventions to lessen suffering for dementia patients who tend to have low quality of life and high caregiver burden (Hanson et al, ; Zalenski et al, ).…”

Consensus statement of the International Summit on Intellectual Disability and Dementia related to end‐of‐life care in advanced dementia

“…As with other persons in general, place of care at end of life must include offering person‐centred and palliative and hospice support in a range of living and care options, from own or family home, domiciliary, group home, specialized disability services settings and/or (when appropriate) facilities with 24‐hour skilled nursing supports. In advanced dementia, there should also be the opportunity to receive day supports, as well as respite, family support and supportive interventions in their home (Hanson et al., ; Nickle & McCallion, ). Dementia‐related supports and sensory‐based interventions that are designed to maintain quality of life and valued relationships should be offered and constructed along person‐centred planning principles.…”