Long-term care placement: The transitional support needs and preferences of spousal dementia caregivers

Abstract

Background and objectives Many spousal caregivers experience stress, depression, loneliness, guilt and grief when placing a partner with dementia into long-term care. However, there is little research about their transitional support experiences, needs and preferences. This study aimed to gain a deeper understanding of these issues from spousal caregiver and long-term care facility staff perspectives, to inform subsequent support and intervention development. Research design and methods Semi-structured interviews and small group discussions were held separately with spousal caregivers ( n = 9) and care facility staff ( n = 11). Criterion and variation sampling aimed to ensure a range of experiences and perspectives. The ‘Framework’ approach was utilised for data analysis. Interpretation was with respect to underpinning models of stress-grief process in dementia caregiving. Findings A range of informational, psychoeducational and psychosocial supports were identified to help spousal caregivers cope better with the stressors and losses experienced throughout the transition from home to long-term care. Improved education about disease progression, information relating to long-term care provision, peer support and dementia-specific grief counselling were deemed important. Opportunities for better support within care facilities were also identified. Support should be tailored to individual needs and preferences. Discussion and implications The findings suggest a supportive care framework be developed, encompassing the trajectory from assessment for and admission into long-term care to end-of-life and post-bereavement support. Spousal caregivers should have their support needs assessed by trained health or social care professionals and be offered a range of support options as appropriate.