Frontotemporal Dementia: Behavioral Symptoms and Caregiver Distress

Abstract

Objective: To discern behavioral problems that co-occur in frontotemporal dementia (FTD) patients, and to investigate the relation between behavioral clusters and the burden for caregivers. Patients and Methods: Baseline data of 63 FTD patients and their respective caregivers were used to detect the behavioral clusters in the Neuropsychiatric Inventory (NPI) and the accompanying distress evoked in caregivers. To detect the clusters in behavior of the FTD patients, we performed multidimensional scaling (procedure: PROXSCAL). Multiple regression analysis was used to determine the association between behavior of patients and the distress experienced by caregivers. Results: This was the first study that found behavioral clusters for FTD. Two behavioral clusters were found: agitation/psychosis (comprising delusions, hallucinations, irritability and agitation) and mood (made up of anxiety and depression). The remaining NPI domains (euphoria, disinhibition, aberrant motor behavior and apathy were found to be autonomous. After controlling for relevant confounding factors, caregiver distress was strongest related to agitation/psychosis, followed by mood. Disinhibition and aberrant motor behavior were mildly related to caregiver distress. Euphoria and apathy were not significantly related to distress. Caregivers of patients living at home were more distressed by the behavioral problems of the FTD patients than caregivers of hospitalized patients. Discussion: The high prevalence of psychopathology in FTD patients and the associated caregiver distress was confirmed in this study. Clustering behavioral symptoms allows investigation of the relationship between structural or functional cerebral deficits and neuropsychiatric symptoms.

Identifying Cognitive and Demographic Variables That Contribute to Carer Burden in Dementia

“…It is noteworthy that in a study by Mioshi et al [3], a similar approach incorporating the carer's self-report of depression and their number of social contacts predicted 54% of the variance in carer burden. Others have found that burden is associated with carer's report of behavioural symptoms and reduced activities of daily living skills [6,7,10,12,31]. Together, these studies indicate that carer depression, paucity of social contacts, younger patient age and specific changes in the patient's behaviour and cognitive abilities (especially memory decline and loss of ability to recognise emotional expressions) contribute to carer burden.…”

“…It is therefore possible that the contribution of this task to the final model might have been detected with a larger sample. Importantly, however, while increased burden has been reported in carers of patients with behavioural disinhibition [6,7,31], other studies have shown that a carer's reaction to problem behaviours and coping style are more important predictors of carer burden than the actual frequency of impulsive or disinhibited behaviours [8,13,32]. …”

“…Specific mood/behavioural changes such as apathy and depression in patients with Alzheimer's disease (AD) [5] and disinhibition in patients with frontotemporal dementia (FTD) [6,7] have also been linked with high carer burden. Some carer-related demographic variables influence the level of burden reported: women tend to report higher levels than men [2,8,9] and those with fewer social contacts have higher perceived burden/stress [3,10].…”

Review of Emotion Recognition in Mild Cognitive Impairment

“…FTD produces a distinct profile of symptoms including loss of insight, social disinhibition, diminished emotions and selfishness [60,61,62], often with little initial cognitive decline [63]. Given the prominent role that behavioural and emotional changes play in FTD patients, it is not surprising that a number of studies have been undertaken to explore emotion recognition in this disease group, and empirical evidence strongly suggests an impaired ability to recognise a range of emotional facial expressions.…”

ACNP White Paper: Update on Use of Antipsychotic Drugs in Elderly Persons with Dementia

“…Psychosis and agitation in patients with different types of dementias have been consistently associated with increased caregiver distress (Kaufer et al, 1998;Fuh et al, 2001;Donaldson et al, 1998;Aarsland et al, 2007;Mourik et al, 2004). The myriad of adverse psychological and physical consequences of caregiver stress has been reviewed (Pinquart and Sorensen, 2003).…”