Frontotemporal dementia or frontotemporal degeneration refers to a range of disorders that impact the brain’s frontal lobes (regions behind the forehead) or its temporal lobes (regions behind the ears). These areas of the brain are commonly associated with personality, behavior and language.
Apathy in FTD is one of the most challenging aspects of the disorder for caregivers and health care professionals to manage. Those with FTD have no motivation and/or the ability to participate in anything, from everyday activities to social events to household tasks, even personal hygiene and self-care.
Managing apathy in those with FTD should be individually tailored, and effective interventions and environmental strategies should be delivered with understanding and patience.
Caregivers can assist in the journey of FTD by learning all about the disease-related changes in the brain that are affecting their loved ones. Getting educated about FTD and its processes can help to maintain the caregiver’s empathetic connection to the individual and thus, reduce anger and frustration in the relationship of both parties.
After assessing the needs and interests of the person with FTD, a more person-centered approach can be maintained. Look at their life, including spiritual, emotional, physical, nutritional, intellectual and social interests. What motivates him or her? What brings joy? What music could be played? Then develop activities based on that and adapt them accordingly as abilities change during the progression of the disorder.
Eliminating the need to make decisions and having a planned structure are helpful and necessary ways to manage and reduce apathy.
Those with FTD require a lot of time to process information and instructions, so it is important not to rush communications or the prescribed activity. External cueing may be necessary to start an activity and keep the individual engaged. Reliance just on verbal cuing will be less effective as FTD progresses, so caregivers may need to take more direct action or mimic the action they want their loved ones to perform.
Incorporate a customized music playlist for the individual and promote physical activity like walking or dancing. Repetitive activities also work well, such as folding laundry, as these are consistent with some of the behavioral symptoms associated with FTD.
Additionally, multisensory activities may overwhelm the individual, so these need to be introduced one sense at a time as to not distract the individual or cause him or her to lose interest. Overall, any engagement with the individual with FTD should be enjoyable, nonthreatening and purposeful to generate motivation and to garner more enthusiasm, pleasure and to maintain a quality of life.
Many caregivers feel guilty about “not doing enough” for their loved ones which adds undue stress. Joining a support group specifically for FTD caregivers can help them express their feelings, in addition to learning more ways and suggestions to manage apathy in their loved ones. Contact the Association for Frontotemporal Degeneration at theaftd.org or (866) 507-7222 for more information and resources.