Meaning-making of dementia caregiving: A systematic review of qualitative studies

Being the backbone of informal care for people living with dementia, caregivers suffer overwhelming physical and psychological challenges in their daily caregiving experience. Proactive coping strategies to alleviate the caregiving burden are of utmost importance. Meaning-making emerges as an effective coping approach to benefit caregivers and mitigate their care burden. However, the conceptualisation of meaning-making on its dimensions and process has been ambiguously identified.

To synthesise the qualitative research evidence on meaning-making in a dementia context to identify: (1) the situational dimension in making sense of caregiving scenarios, and (2) how the meaning-making process evolves during dementia caregiving.

This systematic review identified 62 qualitative studies published between 1969 and 2022 from the major databases. Eligible studies met the following inclusion criteria: (1) having informal caregivers of people living with dementia; (2) involving meaning-making of care experience; (3) adopting qualitative design; and (4) full-text of research articles. The risk of bias was evaluated using the Clinical Appraisal Skills Programme checklist. By using Qualitative Evidence Synthesis, themes relevant to critical dimensions and phases of meaning-making were generated from the extracted data.

Sixty-two studies involving 2487 subjects were synthesised investigating the critical dimensions and process of meaning-making of dementia care experience. Results indicated that the dementia care experience can be made sense of in several folds: (1) it involved complicated demands from people living with dementia and requires customised care; (2) the dynamics of dyadic interactions with dilemma and ambivalence; and (3) adaptive coping encapsulating perceptions of loss and growth, complied and integrated values, balanced expectations of care and self, and improvement in self-efficacy. The meaning-making process underwent phases of meaning creation (meaning created in initial encounter with dementia symptoms), meaning appraisal (assimilation and accommodation pathways for appraisal), and meaning adherence (integration of the appraised meanings).

Findings suggest meaning-making of dementia caregiving is a multi-faceted and multi-phased recursive process. Future implications give directions on the facilitation of meaning-oriented interventions to enhance the awareness of caregiving role and the knowledge of dementia care, learn techniques of reframing and restructuring, and seek meaningful perspectives; and to adopt strategies to overcome the barriers for meaning-making by empowering self-identity, roles and expectations, and the dyadic relationship. In addition, our findings inform future advancement in the conceptualisation and measurement of meaning-making in the context of family caregiving. Optimisation of the meaning-making process inspires professional assistance to enhance caregivers' coping for dementia care experience.