Abstract
Abstract
Background
Informal caregivers play a fundamental role in the diagnosis, treatment, and care received by their family members. Caring for someone with dementia is particularly burdensome and can have negative effects on caregivers’ health. Despite caregivers being widely recognized as vulnerable, the psychosocial needs of caregivers who are managing cancer themselves remain unknown.
Objective
This study aims to investigate the experiences of UK family caregivers who have received a cancer diagnosis while caring for someone with dementia or memory problems.
Methods
Twenty-five UK informal family caregivers who had received a cancer diagnosis were recruited through convenience sampling to take part in in-depth semistructured interviews. The interviews explored participants’ experiences of managing cancer alongside dementia caregiving, including the impact on treatment and caregiving, emotional challenges, support needs, and experiences of formal and informal support. Ethical approval was obtained from the Leeds Beckett University Research Ethics Committee, and all participants provided informed consent. Reflexive thematic analysis was conducted.
Results
Three key themes were identified: (1) caring responsibilities can complicate and take priority over cancer care, (2) caregiving can intensify cancer-related distress and anxieties, and (3) managing cancer while caring increases the need for support and coping resources. For dementia caregivers, having cancer can surface/heighten feelings of predeath grief and worries about future care planning for their care recipient. Dementia caregivers viewed multifaceted social support as vital for enabling access to and coping with cancer treatment.
Conclusions
Dementia caregivers who are also living with cancer continue to shoulder the burden of illness work on behalf of their care recipients while simultaneously managing their own cancer diagnosis and treatment. Caregiving responsibilities often take priority over cancer care, intensify the practical and emotional challenges of cancer, and increase the need for and reliance on support resources. These findings highlight the need for person-centered adjustments to cancer care, dementia-friendly health care environments, and tailored psycho-oncology support that address the practical and emotional needs of dementia caregivers.