KEY TAKEAWAY

Cognitive impairment is a co-constructed, dyadic experience where relational interdependence, preservation of selfhood and a collectivist family system reshape the lived reality of cognitive decline.

INTRODUCTION

• Major Neurocognitive Disorder (MNCD) and Mild Cognitive Impairment (MCI) are critical public health concerns that profoundly disrupt an individual’s cognitive health, core personhood and relationship dynamics (1).
• Traditional biomedical and epidemiological frameworks prioritize objective tracking of individual cognitive deficits, creating a significant gap in understanding the relational and socio-culturally embedded experience of decline (2).
• In India, dementia care is localized within the family unit, heavily governed by collectivist values, joint family structures, gendered expectations and a cultural normalization of aging that frequently delays medical help-seeking (3,4).

Research Question: How do persons with cognitive impairment (PWCI) and their carer dyads collectively experience and make meaning of the realities and difficulties of navigating through cognitive decline?

METHODS

1. Design & Philosophy

• Framework: Interpretivist-Phenomenology executed via Reflexive Thematic Analysis (RTA) (5).
• Design Flow: Interpretivism → Research Question → Methods → Relativist Ontology → Subjectivist Epistemology
• Core Stance: Cognitive impairment is treated as multiple, fluid, lived realities (Relativism) co-constructed through shared dyadic relationships (Subjectivism).

2. Setting & Participants

• Setting: Cognitive Clinic, Bangur Institute of Neurosciences (BIN), Kolkata, India.
• Cohort: Purposive sample of 13 Bengali dyads (N = 26 total participants). Sampling stopped at the Information Power baseline.
• PWCIs: Age 56–72 (Mean: 63.76); Clinical Dementia Rating (CDR) scores 0.5 to 2 (6); middle to lower-middle socioeconomic class.

3. Data Collection & Processing

• Method: Face-to-face, in-depth, semi-structured interviews
• Dyadic Protocol: Two separate, sequential sessions per family unit:
• PWCI Session: Explored lived experience of cognitive shifts
• Carer Session: Explored functional difficulties, role shifts and coping with the changes.
• Language & Integrity: Conducted in Bengali, transcribed verbatim and translated to English. Cultural equivalence verified using independent back-translation.

4. Analysis & Rigor

• Analytical Tool: Manual 6-phase RTA (Braun & Clarke) using conceptual matrix charts (5).
• Coding Depth: Interpretative latent coding to actively interpret psychological and socio-cultural meanings of loss and dignity.
• Rigor over Metrics:
• Data Triangulation: Cross-validating PWCI and carer narratives.
• Collaborative Reflexivity: Deep, iterative dialogue between researchers (DB & BB) to resolve interpretive nuances.
• Reflexive Journaling: Actively auditing researcher positionality against collectivist Indian care assumptions.

RESULTS

Theme 1: The Creeping Shadow: Navigating the Ambiguity and Belated Realization of Cognitive Decline

• PWCI's Quote: "I saw that I have bring home only 3–4 things out of five… it happened few times… then I understand I am forgetting things on a regular basis"
• Carer's Quote (Son): "In the evening, when people return home from work, he sits quietly and keeps looking in that direction, and sometimes says, 'Look what I have become.' The fact that he can’t do anything anymore causes him a lot of pain."

Theme 2: Disrupted Livelihood: The Practical and Existential Erosion of Daily Routines and Vocational Roles

• PWCI's Quote: "There are times when I am making a pot and I... forget to take it out... so it turns into waste"
• Carer's Quote (Wife): "If he doesn’t see me for a short time, he becomes anxious... As soon as I return, he asks, 'Where did you go?'... And he gets angry over everything; I don’t know what to say."

Theme 3: Anchored in the Past: The Strained Present of Anomia and Memory Loss vs. the Sanctuary of Autobiographical Recall

• PWCI's Quote: "I sometimes forget to do daily work. Everyday household work, such as bringing the clothes from outside... I don’t do much work at home these days."
• Carer's Quote (Daughter): "She remembers old memories very well... relates everything about our relatives"

Theme 4: Metamorphosis of Self: Navigating Affective Shifts, Personality Transformations and Relational Friction

• PWCI's Quote: "I cannot stay alone, I am fearful. I want my daughter or husband around."
• Carer's Quote (Daughter): "My mother is becoming very childlike... If there is even a slight delay in giving her food, she gets very angry. She behaves very badly with everyone, especially with my father."

Theme 5: Under One Umbrella: Relational Interdependence, Adaptive Coping and the Demands of Family Caregiving

• PWCI's Quote: "I am with my wife most of the day. I do whatever she asks me to do."
• Carer's Quote (Wife): "Now I always keep him with me. For example, when I drink water, I think that since I felt thirsty, he must be thirsty too. So I give him water at that time..."

Theme 6: The Armour of Denial: Safeguarding Dignity and Resisting the Reality of Cognitive Deterioration

• PWCI's Quote: "I don't have any problem as such. I used to have problems in remembering, now I can remember."
• Carer's Quote (Husband): "I am standing by the fire with her until she turns off the gas… the doctor has advised me to keep her active but she forgets the steps"

CONCLUSIONS

• Relational Interdependence: Interdependence is the defining characteristic of dementia within Indian households; a person’s behavioural adaptation is thoroughly inseparable from the carer's daily involvement (1).
• Behavioural Shifts: While emotional and personality transformations have an underlying neurocognitive basis, their real-world expression and interpretation within the household are profoundly shaped by family dynamics, threats to occupational identity and the psychological dread of becoming a family burden. (7).
• Implications for Practice: Clinical models must move past individualistic, deficit-focused assessments. There is an urgent need for the development of culturally sensitive, strengths-based and family-focused models of dementia care in India (1).
• Healthcare Recommendations: Systems must emphasize early detection, structured family psychoeducation and context-specific intervention outlines that respect dignity, continuity of “selfhood” and relational well-being (1,8).

REFERENCES

1. Prince M, Wimo A, Guerchet M, Ali GC, Wu YT, Prina M. World Alzheimer Report 2015: The global impact of dementia. London: Alzheimer’s Disease International; 2015.
2. Eriksen S, Engedal K, Grov EK. Lifeworld perspectives of people with dementia: a meta-aggregation of qualitative studies. BMC Geriatr. 2022;22(1):970.
3. Peach E, et al. Gradual onset and dawning awareness of cognitive decline. Qual Health Res. 2017;27(4):510-521.
4. Dean J, et al. Recognizing early cognitive symptoms and patterns of impairment. Ageing Soc. 2014;34(6):915-932.
5. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77-101.
6. Morris JC. The Clinical Dementia Rating (CDR): current version and scoring rules. Neurology. 1993;43(11):2412-2414.
7. Hazzan AA, et al. Interpersonal relationships, self-perception, and caregiving dynamics in dementia. BMC Geriatr. 2022;22(1):112.

1. Adams T. Kitwood's approach to dementia and dementia care: a critical but appreciative review. J Adv Nurs. 1996;23(5):948-53. doi: 10.1046/j.1365-2648.1996.10613.x.