Partners in FTD Care, Summer 2022
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Frontotemporal degeneration (FTD), which refers to a group of progressive neurological diseases affecting the brain’s frontal and temporal lobes, is the most common cause of dementia for people under age 60. The FTD disorders are characterized by gradual deterioration in behavior, personality, language, and/or movement, with memory usually relatively preserved. FTD may also be referred to as frontotemporal dementia, frontotemporal lobar degeneration (FTLD), or Pick’s disease.

Clinical FTD diagnoses include behavioral variant FTD (or bvFTD, the focus of this issue’s story of Sean and June), primary progressive aphasia (PPA), corticobasal syndrome (CBS), progressive supranuclear palsy (PSP), and ALS with FTD. Specific symptoms and the course of disease can vary significantly across individuals, even within the same subtype.

Although the age of onset can range from 21 to 80, the majority of FTD cases occur between 45 and 64. The young age of onset substantially increases the impact of the disease on work, relationships, and the economic and social burden faced by families.

FTD is frequently misdiagnosed as Alzheimer’s disease, depression, Parkinson’s disease, or a psychiatric condition. On average, it currently takes 3.6 years to get an accurate diagnosis. There are no cures or disease-modifying treatments for FTD, and the average life expectancy is 7-13 years after the start of symptoms.

See also:

• Finding the Way: Successfully Transitioning to Residential Care
• Tips for Residential Care Staff to Create a Smooth Transition
• Behavioral Symptoms of FTD
• Families and Community Care Staff: Working Together to Achieve Person-Centered FTD Care
• Developing a Person-Centered FTD Care Team and Plan of Care
• Download the full issue (pdf)