UNDERSTANDING THE CHALLENGES, NEEDS, AND QUALITIES OF FRONTOTEMPORAL DEMENTIA FAMILY CAREGIVERS

• Published in: The American journal of geriatric psychiatry 2019-03, Vol.27 (3), p.S139-S140
• Main Authors: Nowaskie, Dusitn, Austrom, Mary, Morhardt, Darby
• Format: Article
• Language: English
• ISSN: 1064-7481; 1545-7214
• DOI: 10.1016/j.jagp.2019.01.047

Caregivers of persons with frontotemporal disorders (FTD) have unique challenges and needs. They show higher levels of stress, depression, and burden than those caring for persons with Alzheimer's disease. The clinical profiles and pathologies associated with FTD are heterogeneous and characterized by two main phenotypes: a progressive deterioration in behavior, emotion, and interpersonal conduct known as behavioral variant FTD (bvFTD) and a decline in language skills known as primary progressive aphasia (PPA). While there is abundant literature regarding the experience of caregiving for persons with AD, there are very few studies examining the experience of caring for persons with FTD and none that have compared behavior and language variant caregivers. Caregivers of persons with bvFTD (Indiana University) and PPA (Northwestern University) were invited to participate in in-depth individual interviews to understand the nature of living with FTD from early symptoms to diagnosis and caregiving over time. 9 caregivers (5 bvFTD and 4 PPA) were interviewed. Interviews were recorded and transcribed. Transcripts underwent content analysis for emerging themes within the same profile and then discussed among authors for similarities and differences between profiles. Analysis revealed the following resulting themes: 1) Obtaining an accurate diagnosis was a difficult and lengthy process; 2) Finding lack of available information and misunderstanding the diagnosis; 3) Adapting to changing roles; 3) Experiencing significant financial and legal challenges; 4) Grieving losses, particularly developmentally non-normative losses due to younger age of onset; 5) Finding lack of disease specific services and knowledgeable providers; and 6) Receiving support in disease specific programs. Within these common general themes, there were differences in how disease presentations impacted functioning and challenged relationships. Caregivers of persons with FTD experience distinctive challenges that involve psychosocial, financial, and legal aspects of their lives. Likewise, their needs include finding accurate and specific information as well as competent providers. Perseverance and adaptability are two key qualities involved in caring for persons with FTD, yet caregiver burden remains high. The findings from these interviews illuminate the need for greater attention and support for FTD caregivers by knowledgeable care providers. Not applicable.