Frontotemporal Dementia Knowledge Scale (FTDKS) Evidence / Reference List

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Frontotemporal Dementia Knowledge Scale (FTDKS) Evidence / List 1. Frontotemporal dementia is a type of Alzheimer s disease. 2. For the majority of people with frontotemporal dementia, symptoms appear before they are 65 years old. Bang J, Spina S, Miller BL. Frontotemporal dementia. Lancet. 2015. Pressman PS, Miller BL. Diagnosis and management of behavioral variant frontotemporal dementia. Biol Psychiatry. 2014. Coyle-Gilchrist ITS, Dick KM, Patterson K, et al. Prevalence, characteristics, and survival of frontotemporal lobar degeneration syndromes. Neurology. 2016. Pressman PS, Miller BL. Diagnosis and management of behavioral variant frontotemporal dementia. Biol Psychiatry. 2014. 3. Among all people with dementia, 5-10% of them have frontotemporal dementia. 4. People in their thirties can develop symptoms of frontotemporal dementia. Snowden JS, Neary D, Mann DMA. Frontotemporal dementia. Br J Psychiatry. 2002.

5. Memory loss is a major symptom of frontotemporal dementia. Cerami C, Scarpini E, Cappa SF, Galimberti D. Frontotemporal lobar degeneration: Current knowledge and future challenges. J Neurol. 2012. 6. Frontotemporal dementia can be passed down from parent to child. Reul S, Lohmann H, Wiendl H, Duning T, Johnen A. Can cognitive assessment really discriminate early stages of Alzheimer s and behavioural variant frontotemporal dementia at initial clinical presentation? Alzheimer s Res Ther. 2017. Elahi FM, Miller BL. A clinicopathological approach to the diagnosis of dementia. Nat Rev Neurol. 2017. Pottier C, Ravenscroft TA, Sanchez- Contreras M, Rademakers R. Genetics of FTLD: Overview and what else we can expect from genetic studies. J Neurochem. 2016. 7. Among people under 60 years old, frontotemporal dementia is about as common as Alzheimer s disease. Mann DMA, Snowden JS. Frontotemporal lobar degeneration: Pathogenesis, pathology and pathways to phenotype. Brain Pathol. 2017. Bang J, Spina S, Miller BL. Frontotemporal dementia. Lancet. 2015.

8. The results of a brain scan by itself can tell you whether a person has frontotemporal dementia. Pressman PS, Miller BL. Diagnosis and management of behavioral variant frontotemporal dementia. Biol Psychiatry. 2014. 9. People with frontotemporal dementia do best when given choices among many options. Merrilees J. A model for management of behavioral symptoms in frontotemporal lobar degeneration. Alzheimer Dis Assoc Disord. 2007. O Connor CM, Clemson L, Brodaty H, Gitlin LN, Piguet O, Mioshi E. Enhancing caregivers understanding of dementia and tailoring activities in frontotemporal dementia: Two case studies. Disabil Rehabil. 2016. 10. There are treatments to slow down frontotemporal dementia. Piguet O, Hornberger M, Mioshi E, Hodges JR. Behavioural-variant frontotemporal dementia: Diagnosis, clinical staging, and management. Lancet Neurol. 2011. Perry D, Miller B. Frontotemporal dementia. Semin Neurol.

11. After symptoms of frontotemporal dementia appear, the average life expectancy is 7 to 13 years. Coyle-Gilchrist ITS, Dick KM, Patterson K, et al. Prevalence, characteristics, and survival of frontotemporal lobar degeneration syndromes. Neurology. 2016. Onyike CU, Diehl-Schmid J. The epidemiology of frontotemporal dementia. Int Rev Psychiatry. 12. Based on their age, people who are 70 years old are more likely to develop frontotemporal dementia than people who are 50 years old. 13. On average, caregivers of people with frontotemporal dementia report more stress than caregivers of people with other dementias. Vieira RT. Epidemiology of early-onset dementia: A review of the literature. Clin Pract Epidemiol Ment Heal. Perry D, Miller B. Frontotemporal dementia. Semin Neurol. Ratnavalli E, Brayne C, Dawson K, Hodges JR. The prevalence of frontotemporal dementia. Neurology. 2002. Küçükgüçlü Ö, Söylemez BA, Yener G, Barutcu CD, Akyol MA. Examining factors affecting caregiver burden: A comparison of frontotemporal dementia and Alzheimer s disease. Am J Alzheimer s Dis Other Dementias. 2017. Mioshi E, Bristow M, Cook R, Hodges JR. Factors underlying caregiver stress in frontotemporal dementia and Alzheimer s disease. Dement Geriatr Cogn Disord. 2009. Mioshi E, Foxe D, Leslie F, et al. The impact of dementia severity on caregiver burden in frontotemporal dementia and Alzheimer disease. Alzheimer Dis Assoc Disord.

14. Medications designed to improve memory and thinking in people with Alzheimer s disease are also appropriate for people with frontotemporal dementia. 15. The language variant of frontotemporal dementia is more common than the behavioral variant. 16. People with the behavioral variant of frontotemporal dementia have difficulty remembering events from the past. 17. People with the behavioral variant of frontotemporal dementia lack interest in things they used to find enjoyable. Perry D, Miller B. Frontotemporal dementia. Semin Neurol. Snowden JS, Neary D, Mann DMA. Frontotemporal dementia. Br J Psychiatry. 2002. Reul S, Lohmann H, Wiendl H, Duning T, Johnen A. Can cognitive assessment really discriminate early stages of Alzheimer s and behavioural variant frontotemporal dementia at initial clinical presentation? Alzheimer s Res Ther. 2017.

18. People with the language variant of frontotemporal dementia are able to read and write without difficulty.