Unseen and unheard: needs of older spousal caregivers in Alzheimer's care without national support programs

Older spousal caregivers are a significant part of the family caregivers of individuals with Alzheimer's Disease (AD) and, due to their unique situation, have their own specific support needs. However, little is known about their needs, particularly in countries without integrated formal support systems, such as Iran. Identifying the actual support needs of these caregivers leads to the design of effective interventions. This study aimed to explore and conceptualize the support needs of older spousal caregivers of people with AD.

This qualitative investigation employed Graneheim and Lundman's conventional content analysis approach. Overall, 10 caregivers (seven wives and three husbands, mean age = 68.6, SD = 6.7) were selected through purposive sampling. Data were collected through semi-structured, in-depth interviews and field notes. Data collection and analysis were performed concurrently until conceptual saturation was achieved. Trustworthiness was ensured through Lincoln and Guba's criteria.

The overarching theme, "Need to be seen and heard," emerged from the data, encompassing six main categories and 17 subcategories. Key categories included the need for multidimensional education as an older caregiver, preserving spousal identity amid the caregiver role, responsible family involvement, social understanding and support, government support services related to AD, and a supportive health care team.

The findings highlight that older spousal caregivers have individual and complex support needs that must be promptly addressed. Health practitioners and policymakers can utilize these insights to design targeted support programs and interventions for these older caregivers, particularly in resource-constrained settings.