Caregiver Support and Needs in Dementia Care

Dementia care places substantial demands on informal caregivers, most often family members who assume complex roles without formal training. These caregivers navigate emotional strain, financial challenges and the progressive decline of their relatives, while seeking timely information on symptom management, healthcare services and self-care strategies. As dementia advances, behavioural and psychological symptoms of dementia (BPSD) such as agitation, wandering and mood fluctuations become more pronounced, heightening caregiver stress and risk of burnout. Effective support encompasses tailored education, psychosocial interventions, respite care and peer support networks, all delivered within a coherent care pathway that adapts to changing needs over the disease trajectory. Digital platforms and virtual training have emerged as promising modalities to bridge geographical barriers and time constraints, offering flexible access to evidence-based guidance. Meanwhile, coordinated policies and community resources remain unevenly distributed, underscoring the importance of social capital and equitable service navigation. Globally, enhancing caregiver resilience not only improves quality of life for both caregiver and person with dementia but also sustains informal care capacity, delaying institutionalisation and reducing health-system burden.

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Caregiver Support and Needs in Dementia Care publication trend

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Technical terms

Informal caregiver: A non-professional individual, often a family member, who provides ongoing care and support to a person with dementia without monetary compensation.

Care pathway: A structured multidisciplinary plan detailing the sequence and timing of interventions for dementia care, ensuring consistency and adaptability to patient and caregiver needs.

Behavioural and psychological symptoms of dementia (BPSD): A range of non-cognitive disturbances—such as agitation, aggression, anxiety and psychosis—commonly observed in individuals with dementia.

Respite care: Temporary relief services that allow informal caregivers to rest or attend to personal needs while ensuring the person with dementia receives supervised care.

References

1. Dynamics of Interaction among Professionals, Informal Supporters, and Family Caregivers of People with Dementia along the Dementia Care Pathway: A Nationwide Survey in Japan. International Journal of Environmental Research and Public Health (2023).
2. Exploring the Needs of Spousal, Adult Child, and Adult Sibling Informal Caregivers: A Mixed-Method Systematic Review. Frontiers in Psychology (2022).
3. Healthcare system navigation difficulties among informal caregivers of older adults: a logistic regression analysis of social capital, caregiving support and utilization factors. BMC Health Services Research (2024).