Gentry, Melanie T; Lapid, Maria I; Syrjanen, Jeremy; Calvert, Kendrick; Hughes, Samantha; Brushaber, Danielle; Kremers, Walter; Bove, Jessica; Brannelly, Patrick; Coppola, Giovanni; Dheel, Christina; Dickerson, Bradley; Dickinson, Susan; Faber, Kelley; Fields, Julie; Fong, Jamie; Foroud, Tatiana; Forsberg, Leah; Gavrilova, Ralitza; Gearhart, Deb; Ghoshal, Nupur; Goldman, Jill; Graff‐Radford, Jonathan; Graff‐Radford, Neill; Grossman, Murray; Haley, Dana; Heuer, Hilary; Hsiung, Ging‐Yuek; Huey, Edward; Irwin, David; Jones, David; Jones, Lynne; Kantarci, Kejal; Karydas, Anna; Knopman, David; Kornak, John; Kramer, Joel; Kukull, Walter; Lucente, Diane; Lungu, Codrin; Mackenzie, Ian; Manoochehri, Masood; McGinnis, Scott; Miller, Bruce; Pearlman, Rodney; Petrucelli, Len; Potter, Madeline; Rademakers, Rosa; Ramos, Eliana Marisa; Rankin, Katherine; Rascovsky, Katya; Sengdy, Pheth; Shaw, Leslie; Tatton, Nadine; Taylor, Joanne; Toga, Arthur; Trojanowski, John; Weintraub, Sandra; Wong, Bonnie; Wszolek, Zbigniew; Boeve, Bradley F; Boxer, Adam; Rosen, Howard; Consortium, the LEFFTDS

doi:10.1002/alz.12095

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Quality of life and caregiver burden in familial frontotemporal lobar degeneration: Analyses of symptomatic and asymptomatic individuals within the LEFFTDS cohort

2020

Published Web Location

https://doi.org/10.1002/alz.12095

Abstract

Objective

The Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects evaluates familial frontotemporal lobar degeneration (FTLD) kindreds with MAPT, GRN, or C9orf72 mutations. Objectives were to examine whether health-related quality of life (HRQoL) correlates with clinical symptoms and caregiver burden, and whether self-rated and informant-rated HRQoL would correlate with each other.

Methods

Individuals were classified using the Clinical Dementia Rating (CDR^® ) Scale plus National Alzheimer's Coordinating Center (NACC) FTLD. HRQoL was measured with DEMQOL and DEMQOL-proxy; caregiver burden with the Zarit Burden Interview (ZBI). For analysis, Pearson correlations and weighted kappa statistics were calculated.

Results

The cohort of 312 individuals included symptomatic and asymptomatic individuals. CDR^® plus NACC FTLD was negatively correlated with DEMQOL (r = -0.20, P = .001), as were ZBI and DEMQOL (r = -0.22, P = .0009). There was fair agreement between subject and informant DEMQOL (κ = 0.36, P <.0001).

Conclusion

Lower HRQoL was associated with higher cognitive/behavior impairment and higher caregiver burden. These findings demonstrate the negative impact of FTLD on individuals and caregivers.

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