Behavioural interventions for enhancing life participation in behavioural variant frontotemporal dementia and primary progressive aphasia

Abstract

Primary progressive aphasia (PPA) and behavioral-variant frontotemporal dementia (bvFTD) are clinical syndromes under the umbrella term “frontotemporal dementia (FTD)” and are caused by a neurodegenerative disease with an onset most typically in the productive years of adulthood. The cognitive and behavioral impairments associated with FTD interfere with the successful engagement in typical life roles, such as parenting, working, and maintenance of interpersonal relationships. There are currently no treatments to stop or slow the degenerative process and there are only very limited medication options for the management of the cognitive-behavioral symptoms. However, alternative, non-pharmacological interventions may offer significant benefit to the quality of life of the diagnosed individual. The goal of this paper is to provide an overview of the approaches available through neurorehabilitation and community-based services that facilitate successful engagement in life activities and promote optimal quality of life for the individuals and families living with FTD. It is hoped that as medical providers become more familiar with behavioral interventions, referrals for services will increase thereby allowing individuals with FTD and their caregivers to learn ways to adapt, adjust, and participate in life to the fullest despite the impairments from this progressive disease.

Historical Evolution of the Frontal Lobe Syndrome

“…On the one hand, patients can be taught compensatory behavior. Depending on the affected cognitive domains, especially memory function, methods focusing on adaptation of the patient's reaction to certain environmental cues have been shown to be effective [78,79] . On the other hand, since many patients with frontal dysfunction develop utilization behavior to some extent or even an excessive dependence upon environmental cues (sometimes referred to as an 'environmental dependency syndrome'), modifying the environment may be of substantial benefit [79] .…”

“…Since these pharmacological interventions are limited and no disease-modifying treatment is currently available, nonpharmacological interventions may provide a means to decrease symptom severity as well as caregiver burden [78,79] . On the one hand, patients can be taught compensatory behavior.…”

Non-pharmacological Management of Behavioral Symptoms in Frontotemporal and Other Dementias

“…The development of these strategies requires expertise and time, something that primary care providers do not always have. Educating providers about an approach to assessment and then identifying community resources and experts to assist in managing these symptoms will be essential, especially in syndromes such as FTD [58]. Occupational therapists have been successful developing individualized regimens incorporating environmental and behavioral strategies [66,93].…”

“…Deficits in information processing related to temporal/ parietal dysfunction may produce limited ability for comprehension and can lead to irritability, aggression, and anxiety when an individual is distracted or overwhelmed. In FTD, the impaired ability to accurately interpret and respond to subtle emotional cues may make attention to the environment especially important [58]. Reducing noise and stimulation, lessening clutter, turning off music, or simplifying social situations can help these patients to accurately focus on a designated task or response.…”

A Review: Mealtime Difficulties following Frontotemporal Lobar Degeneration

“…Recommended management techniques include locking food away, reducing access to large portions, monitoring for food-seeking or stealing, providing healthy alternatives to sweets, cueing the individual to slow down during meals, modifying diet texture as needed, and ensuring proper body positioning for safe swallowing (e.g., bolt upright) [16, 79, 85, 86]. Rehabilitation clinicians can assist caregivers in modifying the eating environment, providing appropriate cues during meals, managing dietary changes, and reducing aspiration risks [87]. Speech pathologists can provide alternative communication methods for individuals unable to verbalize wants and needs during mealtime.…”