JMIR Publications

ABSTRACT

Background:

Informal caregivers play a fundamental role in the diagnosis, treatment, and care received for their family members. Caring for someone with dementia is particularly burdensome, leading to known negative effects on caregivers' health. Despite caregivers being widely recognised as vulnerable, the psychosocial needs of carers who are managing cancer themselves remain unknown.

Objective:

To investigate the experiences and existing gaps in psychosocial support of informal UK caregivers who have received a cancer diagnosis while caring for someone with dementia or memory problems.

Methods:

25 UK informal caregivers who have received a cancer diagnosis were recruited through convenience sampling to take part in an in-depth semi-structured interview. Reflexive Thematic Analysis was conducted.

Results:

Study findings were developed into three key themes (1) caring complicates and can take precedence above cancer care, (2) caregivers may experience additional cancer-related distress and anxieties, and (3) increased need for support and coping resources when caregivers face cancer. For dementia carers having cancer can surface/heighten feelings of predeath grief, and worries around future care planning, for their care recipient. Dementia carers viewed multifaceted social support as vital to enable access to and coping with cancer treatment.

Conclusions:

Caregivers living with cancer themselves continue to shoulder the burden of illness work on behalf of their care recipients. For dementia carers, accessibility and experiences of cancer care may be optimised by person-centred adjustments to care planning and scheduling and dementia-friendly hospital environments. Dementia carers may benefit from tailored psycho-oncology support encompassing carer-role concerns and needs (e.g., predeath grief for their care recipient). Clinical Trial: N/A