A hallmark symptom of FTD, apathy can be particularly hard to deal with for persons diagnosed, care partners, and family members. Apathy manifests as an apparent loss of interest in things that used to have meaning to a person diagnosed; it could present as a lack of enjoyment during a holiday gathering, a decline in passion towards a lifelong hobby, or an uncharacteristic decrease in attention toward hygiene.

Apathy in FTD is best characterized as a decline in goal-directed behavior, which provides a helpful model for understanding and managing it as a symptom. Goal-directed behavior comprises three main components– initiation, planning, and motivation – each of which is supported by a distinct frontal lobe region in the brain. As FTD progresses, it can cause degeneration of these regions that can create different impairments to each of these components:

Management of apathy in FTD is best done by addressing the component of goal-directed behavior that has been most affected. Care that has been tailored to this “broken” component can help a person diagnosed better manage apathy-related impairments to resume activities that have been affected.

If there are problems with initiation, care partners can try taking a multi-sensory approach, combining different cues to help a person diagnosed navigate the impairment. For example, for dinner time, a care partner can announce the meal, show the person diagnosed their food and where they’ll be eating, and encourage them to smell the dish that has been prepared. Minimizing distractions by turning off the TV, keeping any music low, and dimming the lighting can also help.

If there are impairments with planning, persons diagnosed and care partners should consider simplifying daily activities. Care activities like dressing can be streamlined by reducing options for pants and shirts to one or two, with care partners rotating the selection each day. It can also help to develop a daily routine, including time for hobbies and quiet time for resting.

When there are impairments with motivation, it is especially crucial to personalize the approach to the interests of the person diagnosed. It can help to enhance the rewards of activities that help a person diagnosed look after their well-being, such as offering some episodes of their favorite show after they’re done exercising, or a favorite snack after they shower.

When working to manage apathy, care partners and family members should be mindful of the current level of ability of a person diagnosed with FTD – confusion and frustration only make apathy worse. A person who spent many hours gardening outdoors could care for a smaller assortment of indoor plants with help from a care partner, for example.

When adapting to apathy, it can also help to include steps to address challenges specific to the variant of FTD a person has, if it is known. For example, in helping address planning impairments in a person with primary progressive aphasia (PPA), a care partner could provide structured, easy-to-follow steps for daily activities to help navigate the language-based difficulties associated with the variant.

Do you need more guidance on apathy? Consult this pdf handout from AFTD’s Partners in FTD Care that can be downloaded, shared with others, and printed. General advice on managing FTD’s symptoms can be found on the Managing FTD page of AFTD’s website.

If you have questions about apathy or about FTD in general, reach out to AFTD’s HelpLine for guidance, support, and understanding for what you’re going through. The HelpLine can be contacted at 1-866-507-7222 or info@theaftd.org.