When Dementia is in the House – Needs Assessment Survey for Young Caregivers
Katherine R. Nichols, David Fam, Cheryl Cook, Michelle Pearce, Gail Elliot, Sylvia Baago, Kenneth Rockwood and Tiffany W. Chow
Objective: To learn more about the needs and experiences of young carers for patients of frontotemporal dementia (FTD) in order to create a relevant support website for young caregivers to dementia patients.
Methods: Two focus groups were held with a total of fourteen young carers aged 11-18. The data corpus was collected through a semi-structured interview facilitated by a medical journalist who had prior experience as a caregiver to a patient with FTD. The transcripts were narrowed to a dataset for descriptive analysis using a coding scheme to reveal the main themes of their responses.
Results: Seven overlapping theme areas were: emotional impact of living with a parent with FTD, caregiving, coping, symptoms, diagnosis, relationships, and support. Based on the participants’ responses, a website was launched providing supportive information and counsel for young carers.
Conclusion: Young carers saw the experience of caring for a parent with early-onset dementia as positive overall, but identified opportunities for professionals to assist them in overcoming stigma and the challenge of balancing childhood and adolescent development within this context.