Accessing Community-Based and Long-Term Care Services: Challenges Facing Persons with Frontotemporal Dementia and Their Families

There are several barriers to accessing services for persons with frontotemporal dementia (FTD), and few studies have examined service needs and satisfaction with services for family caregivers of persons with FTD. Persons with FTD and their families have reported consistent difficulties in their attempts to access care and support. These are: (1) difficulty obtaining a diagnosis; (2) financial concerns due to loss of employment, job-related income; (3) problems accessing social security disability insurance; and (4) lack of adequate community-based and long-term care services and resources. Successful care practices such as use of an interdisciplinary team and helpful care models such as person-centered care and the antecedent-behavior-consequence method are described. Further investigation and research are needed to understand best care strategies for persons with FTD.