Patients with frontotemporal dementia (FTD) need complete care in the final stages of the disease. Some informal caregivers continue the in-home care whereas others institutionalize. This study identifies differences between in-home FTD patients and their caregivers (FTDH) and institutionalized FTD patients (FTDN) and their caregivers. Twelve in-home and 24 institutionalized FTD patients in the final stages of the disease, and their spousal caregivers, were observed. Neuropsychiatric function disorders, dementia duration and severity, burden, mental and physical health, quality of the current and premorbid relationship and caregiver motivation were analysed. The majority of FTDH patients had dementia of shorter duration and showed residual independence. In FTDH patients, neuropsychiatric symptoms were more often present whereas apathy and disinhibition were more intense in FTDN patients. FTDH caregivers felt more emotionally burdened but had better mental health. Caregiver motivations were similarly present in FTDH and FTDN caregivers, while the love-motivated caregivers had worse physical and mental health. Our data suggest that all FTD caregivers could benefit from psychological support. Motivation for caregiving has intervention potential.

Additional Metadata
Keywords Burden, Caregiver motivation, Frontotemporal dementia, In-home care
Persistent URL dx.doi.org/10.1177/1471301208099045, hdl.handle.net/1765/18471
Citation
Riedijk, S.R, Duivenvoorden, H.J, van Oostrom, I.I.H, Rosso, S.M, van Swieten, J.C, Niermeijer, M.F, & Tibben, A. (2009). Frontotemporal dementia (FTD) patients living at home and their spousal caregivers compared with institutionalized FTD patients and their spousal caregivers: Which characteristics are associated with in-home care?. Dementia, 8(1), 61–77. doi:10.1177/1471301208099045