Understanding Subjective Experiences in Dementia Care

Subjective experiences of dementia care encompass how individuals living with cognitive impairment perceive and make sense of changes in identity, autonomy, emotion and environment. Research employing qualitative interviews, narrative analyses and real-time self-report tools has elucidated central domains such as lived space, agency and social connection. Global policy initiatives highlight the importance of culturally responsive methods that respect individual meaning-making processes. Practically, these insights inform the design of supportive environments—from art-based community programmes to digital resource platforms—and shape psychosocial interventions aimed at fostering resilience, enhancing quality of life and sustaining personhood. Interdisciplinary studies reveal interconnections between spatial perception, coping strategies and inclusion, demonstrating that acknowledging existential aspects of lived space can mitigate isolation and strengthen well-being. Concrete examples include community art workshops that bolster self-esteem and eHealth systems that streamline access to local dementia-friendly services. Continuing work seeks to refine outcome measures to capture in-the-moment experiences, guiding personalised care strategies across diverse cultural settings.

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Understanding Subjective Experiences in Dementia Care publication trend

The graph below shows the total number of articles in understanding subjective experiences in dementia care across all publications each year (not limited to Nature Index journals).

Technical terms

Person-centred care: An approach that prioritises the individual’s personal preferences, values and subjective experience in care planning and delivery.

Psychosocial intervention: Non-pharmacological programmes aimed at improving cognitive, emotional and social functioning of people with dementia.

Lived space: The existential experience of physical and social environments as perceived by individuals living with dementia.

Subjective well-being: A person’s self-reported assessment of their own emotional state, life satisfaction and sense of fulfilment.

Anosognosia: A lack of awareness or insight into one’s own cognitive deficits, common in moderate to advanced dementia stages.

References

1. Usability of a Community-Based Dementia Resource Website: Mixed Methods Study. JMIR Aging (2023).
2. Measuring the well-being of people with dementia: a conceptual scoping review. Health and Quality of Life Outcomes (2020).
3. The changing self: The impact of dementia on the personal and social identity of women (findings from the Improving the Experience of Dementia and Enhancing Active Life programme). Dementia (2021).
4. The experience of lived space in persons with dementia: a systematic meta-synthesis. BMC Geriatrics (2018).
5. Balancing the struggle to live with dementia: a systematic meta-synthesis of coping. BMC Geriatrics (2019).
6. Social inclusion of people with dementia – an integrative review of theoretical frameworks, methods and findings in empirical studies. Ageing and Society (2019).
7. Fostering the Resilience of People With Dementia: A Narrative Literature Review. Frontiers in Medicine (2020).
8. Towards capturing meaningful outcomes for people with dementia in psychosocial intervention research: A pan‐European consultation. Health Expectations (2018).