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Background <p>Dementia poses major challenges for public health and care systems, with family caregivers serving as the primary source of support.</p> Aims <p>This study explored the perceived needs, resources, and meanings attributed to the caregiving experience by family caregivers of people with dementia in a community-based setting.</p> Methods <p>An exploratory qualitative study was conducted using individual semi-structured interviews at a community health center. Sociodemographic and care-related information was collected, and four standardized questionnaires were administered for descriptive contextual purposes only. Qualitative data were analysed thematically with a two-phase approach, starting from an existing framework on meaning-making and using a secondary categorization for defining a conceptual model of barriers and resources.</p> Results <p>Twenty-five caregivers participated in the study. Levels of psychological distress and caregiver burden indicated emotional strain. Qualitative analysis identified three main themes and seven subthemes: (1) Complicated demands and healthcare interactions, including management of complex care needs and interaction with services; (2) Familial and relational dynamics, encompassing changes in family and social relationships, and shifts in reciprocity and role redefinition; and (3) Coping strategies and identity transformation, involving care as a source of personal meaning, sense of caregiving competence, and personal transformation. A conceptual model highlighted interconnected barriers and resources across individual, relational, and structural levels. </p> Discussion <p>The identified themes advance understanding of caregivers’ lived experiences and the interplay between individual, relational, and structural factors. </p> Conclusions <p>The study highlights the importance of considering caregivers’ coping strategies, health literacy, and resources through dedicated community-based interventions aimed at promoting their well-being and enhancing dementia care sustainability.</p>

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Needs, resources, and barriers among family caregivers of people with dementia: a qualitative study

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年7月3日

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  • Chiara Milani,
  • Claudia Biagi,
  • Claudia Rosi,
  • Rachele Mei,
  • Fiorenza Wetzell Cabrera,
  • Diletta Buresta,
  • Marco Del Riccio,
  • Riccardo Barucci,
  • Enrico Benvenuti,
  • Lorenzo Baggiani,
  • Giulia Naldini,
  • Chiara Lorini,
  • Guglielmo Bonaccorsi

摘要

Background

Dementia poses major challenges for public health and care systems, with family caregivers serving as the primary source of support.

Aims

This study explored the perceived needs, resources, and meanings attributed to the caregiving experience by family caregivers of people with dementia in a community-based setting.

Methods

An exploratory qualitative study was conducted using individual semi-structured interviews at a community health center. Sociodemographic and care-related information was collected, and four standardized questionnaires were administered for descriptive contextual purposes only. Qualitative data were analysed thematically with a two-phase approach, starting from an existing framework on meaning-making and using a secondary categorization for defining a conceptual model of barriers and resources.

Results

Twenty-five caregivers participated in the study. Levels of psychological distress and caregiver burden indicated emotional strain. Qualitative analysis identified three main themes and seven subthemes: (1) Complicated demands and healthcare interactions, including management of complex care needs and interaction with services; (2) Familial and relational dynamics, encompassing changes in family and social relationships, and shifts in reciprocity and role redefinition; and (3) Coping strategies and identity transformation, involving care as a source of personal meaning, sense of caregiving competence, and personal transformation. A conceptual model highlighted interconnected barriers and resources across individual, relational, and structural levels.

Discussion

The identified themes advance understanding of caregivers’ lived experiences and the interplay between individual, relational, and structural factors.

Conclusions

The study highlights the importance of considering caregivers’ coping strategies, health literacy, and resources through dedicated community-based interventions aimed at promoting their well-being and enhancing dementia care sustainability.