Awareness of the condition in people living with dementia in a long-term care facility: a systematic review

Dement Neuropsychol. 2025 Sep 29;19:e20240276. doi: 10.1590/1980-5764-DN-2024-0276. eCollection 2025.

ABSTRACT

There has been limited attention given to awareness and subjective experience in people with dementia living in longterm care facilities (LTCFs), particularly those who are likely to have moderate to severe levels of cognitive impairment.

OBJECTIVE: To understand the awareness of people with dementia living in LTCFs of their own condition and its relationship with sociodemographics, cognitive status, depression, neuropsychiatric symptoms and aspects related to care.

METHODS: Medical Literature Analysis and Retrieval System Online (Medline), Scopus, Web of Science Core Collection and Cochrane Central Register of Controlled Trials were searched with a predefined search strategy (International Prospective Register of Systematic Reviews – PROSPERO: CRD42023472820), generating 2,694 articles. The studies included comprised an awareness evaluation in older residents with dementia. The Joanna Briggs Institute (JBI) Critical Appraisal Checklist for analytical cross-sectional was applied to calculate the quality of the observational studies, and the results were synthesized narratively.

RESULTS: Nine cross-sectional observational studies were eligible for this review. One developed a tool to evaluate awareness in residents with severe dementia. Four studies considered depression as an important mediator of awareness. Two studies explored the phenomenological perspective of awareness: the “what” (i.e. objects) and the “how” (i.e. mechanisms and modes of expression) in Alzheimer’s residents. Two studies found a high prevalence of neuropsychiatric symptoms (mainly agitation and apathy) and an association with the severity of the dementia. All evidence concluded that the level of awareness decreases as cognitive deficit progresses.

CONCLUSION: Awareness in the context of LTCFs is influenced by complex factors and requires personalized care strategies that value their potential and reduce caregiver burden.

PMID:41036411 | PMC:PMC12483502 | DOI:10.1590/1980-5764-DN-2024-0276