BPSD Study in Japan:
Patterns in Progression
In 2016, a large research study of dementia clients was conducted to find which behavioral and psychological symptoms of dementia (BPSD) were present in different types of dementia, to clarify the trajectory or progression of symptoms throughout this progression and decipher which symptoms caused the most caregiver distress. This is an important study of a large group of outpatients during a five-year period from 2008 to 2013 (Kazui et al, 2016).
The researchers used several tests including the NPI (Neuropsychiatric Inventory) and the Clinical Dementia Rating (CDR)* as well as medical tests (electroencephalograph, brain MR imaging, and/or cerebrospinal fluid examination for concentrations of amyloid B42 and tau) to determine the dementia diagnosis of the client. Any clients receiving more than one dementia diagnosis or having other comorbid conditions such as brain tumor, epilepsy, or substance abuse were not included in the study. A factor analysis of the NPI component scores was conducted and items were analyzed using principal component analysis (PCA). This reduced the data and extracted combinations of variables. The results of the NPI Caregiver Distress Scale (NPI-D) were used to determine the caregiver stress associated with various behaviors.
The four types of dementia addressed in this study were Alzheimer’s disease (1,091 patients), Dementia with Lewy Bodies (DLB), (249 patients); Vascular Dementia (VaD), (156 patients); and Frontotemporal lobar degeneration (FTLD) with 102 patients.
This study is significant in many ways. One of the most important findings involved the behavioral factors present in each of the four major dementias. Second, the study showed which factors increased with progression of the different dementias, which behaviors caused the most caregiver distress, and which symptoms increased or decreased in frequency and/or severity with the progression of the disease.
In all dementias, the most prevalent BPSD at all cognitive levels (stages of the disease) was apathy. This cannot be stressed enough. If the dementia client is apathetic, intrinsic motivation is typically absent. Attempts to motivate the patient to do what we feel is necessary (drink fluids, bathe, brush teeth, be physically active, take medication, etc.) becomes an uphill battle for caregivers from the beginning. The caregiver receives resistance to care and typically experiences frustration because the client does not want to do the things that could help him or her function or feel better and give the appearance of being well cared for.
Apathy was present in greater than 50% of all AD patients at every cognitive level. Hallucinations increased with progression of the disease and appeared in 35% of all cases at end stages. Disinhibition caused the most caregiver distress at lower CDR levels (beginning of disease), and agitation, sleep disturbances, eating abnormalities, aberrant motor behavior, and anxiety caused the most caregiver stress at advanced stages. It is of note that as AD progressed, the frequency of the BPSD increased, but the severity of most of the symptoms did not.
In DLB, the frequency and severity of the BPSD in early stages of the dementia were higher than in AD patients. When first diagnosed, hallucinations were the most prevalent symptom at the highest levels of cognitive functioning. Apathy was the most prevalent symptom from that point on in the disease. Agitation, irritability, apathy, aberrant motor behavior, sleep disturbances, euphoria, and disinhibition increased as the disease progressed. The behaviors that appeared in over 50% of the 249 cases at all stages of the disease were delusions, hallucinations, and apathy. Above the 0.5 CDR level (very mild dementia), sleep disturbances occurred in more than half the cases. At CDR 2 (moderate dementia), more caregiver stress was reported than at any other point in the progression of the disease and was related to disinhibition, irritability, agitation, delusions, and sleep disorders. It is important to note that in DLB, the severity of symptoms was higher at the earlier stages of the disease than in any of the other three dementias studied.
Vascular Dementia (VaD) data showed apathy as being the most common BPSD with all CDR scores. As the disease progressed, there was an increased frequency of delusions, agitation, apathy, aberrant motor behavior, and sleep disturbances. There was also a worsening in severity of apathy, irritability, and sleep disturbances. Greater caregiver stress was reported with higher CDR scores to include areas of anxiety, apathy, and sleep disturbances. More than 50% of the clients at levels 2 and 3 (moderate and severe stages) had sleep disturbances and agitation; at level 3, more than half experienced irritability. Although delusions occurred in about 20% of VaD clients, this caused moderate or greater caregiver distress in more than half of their caregivers.
In Frontotemporal Lobar Degeneration (FTLD), none of the BPSD were affected by disease severity. As in all types of dementia, apathy was the most prevalent BPSD. There was an increase in frequency of hallucinations, apathy, irritability, and aberrant motor behavior in addition to an increase in the severity of apathy as the disease progressed. Caregiver stress increased with disinhibition at the higher CDR scores. Compared to the other dementias, the incidence of euphoria was high (11.4% at CDR 0.5 and 32% in CDR 2). At the beginning of the disease, irritability, although present in less than 20% of cases, caused moderate to severe caregiver distress in more than half the caregivers.
The frequency of eating abnormalities was higher in FTLD than in AD for all CDR groups. Eating abnormalities on the NPI include rigid dietary preferences, pathological sweet tooth, rushing through meals, and/or refusing to eat.
The authors reported that the data was obtained during the visits of first-time patients to dementia clinics, and these individuals had beginning CDR scores at the following percentages:
CDR 1 (43.6%), CDR 0.5 (31.9%), CDR 2 (19.6%), and CDR 3 (4.9%). The results of the study indicated that some of the behavioral and psychological symptoms were present in high frequency even at the lowest (0.5) CDR levels. The authors suggest that physicians should be able to give the patient and their caregiver(s) information about the kinds of symptoms and behaviors that are likely to occur. The BPSDs with a frequency of greater than 20% of cases at the CDR 0.5 level by dementia are:
AD – 5 symptoms:
Depression
Apathy
Irritability
Anxiety
Delusions
DLB – 9 symptoms:
Delusions
Hallucinations
Apathy
Sleep disturbances
Agitation
Depression
Anxiety
Irritability
VaD – 7 symptoms:
Agitation
Depression
Anxiety
Apathy
Irritability
Sleep disturbances
Eating abnormalities
FTLD – 8 symptoms:
Apathy
Aberrant motor behavior
Sleep disturbances
Eating abnormalities
Irritability
Disinhibition
Anxiety
Depression
In addition, this study identified the BPSD that become more severe as the disease progresses:
In AD: apathy, sleep disturbances, depression, irritability, anxiety, delusions,
hallucinations, agitation, eating abnormalities, aberrant motor behavior, and disinhibition
VaD: apathy, sleep disturbances, depression, and anxiety
DLB: apathy, sleep disturbances, aberrant motor behavior, agitation, irritability,
disinhibition, and euphoria
FTLD: trajectories are unclear.
* The CDR is a rating scale from 1 to 3 that is used by clinicians to indicate level of cognitive impairment.
Sources:
Kazui H, Yoshiyama K, Kanemoto H, Suzuki Y, Sato S, Hashimoto M, et al. Differences of behavioral and psychological symptoms of dementia in disease severity in four major dementias. PLoS ONE , 2016;11(8).