Living with young-onset dementia in the family - a mixed method study.

Background

Studies on disease-related obstructions experienced in everyday life of younger people with dementia (YOD ≤ 65 years) and their families are encouraged.Aim: To explore how the family carers experience six predefined topics that influence the everyday life and needs of persons with YOD.Method: A quantitative and a qualitative study including family carers of persons with young-onset Alzheimer's dementia (AD) and frontotemporal dementia (FTD). Seventy-four informants responded to the Camberwell Assessment of Needs in the Elderly (CANE) and individual interviews were conducted with 13 informants.

Results

Family carers of persons with YOD reported few unmet needs in the CANE assessment. Needs related to behavior and close relationships were reported significantly more frequent (p < 0.1) in persons with FTD than in persons with AD. From the qualitative data, six main themes were emphasized: daily activities turned upside down, involuntary loss of previous social network, losing close relationship, but maintaining a friendship with the spouse, unpredictable behavior adds burdens to a changing life, health and life risks, and economic insecurity for future life and caring costs.

Conclusion

Whilst family carers quantitatively reported unmet needs, the individual interviews reported several major difficulties in everyday life.