Which behaviours and symptoms are the most distressing for family carers of people with dementia?

Mature woman (60s) helping elderly mother (90s).

The November International Psychogeriatrics Article of the Month is entitled “A systematic review of the relationship between behavioral and psychological symptoms (BPSD) and caregiver well-being” by Alexandra Feast, Esme Moniz-Cook, Charlotte Stoner, Georgina Charlesworth, Martin Orrell.

During the course of dementia the vast majority of people will experience some form of behavioural or psychological symptoms (BPSD). BPSD include agitation, aggression, calling out repeatedly, sleep disturbance, and lack of interest and motivation. Numerous studies have reported that these BPSD can be a major source of distress for family caregivers of people with dementia. BPSD are also important predictors of family caregiver depression, burden and care home admission.

In the past people tended to group BPSD as one big category without trying to consider whether one symptom was more distressing for family caregivers than the others. We investigated this by reviewing research articles published in English between 1980 and December 2015 which reported which individual BPSD affected caregiver well-being.

So which behaviours and symptoms are the most distressing for family carers? We found 40 research articles which could help answer our question during our search, however, only 20 research articles were comparable and could be used in the analysis. When we looked at the 16 research articles which reported the frequency of BPSD it was found that depression in the person with dementia was the most distressing for caregivers, followed by agitation/aggression, and lack of interest and motivation. As expected, the person with dementia being excessively happy was the least distressing. However, surprisingly, when we looked at research articles that reported the relationship between BPSD and caregiver well-being (4 research articles) rather than frequency, we found that different BPSD were related to higher levels of distress. Irritable behaviour, inability to sit still, and delusions were the most strongly related to distress. Disinhibited behaviours demonstrating a lack of control, disregard for social conventions, impulsivity, and poor risk assessment were the least related to caregiver distress.

What is the take-home message? We are still unsure whether some BPSD impact caregiver well-being more than others. Studies which look at BPSD individually were limited, and had different ways of measuring BPSD and caregiver well-being. In future we need to measure BPSD and caregiver well-being consistently, and also look at BPSD individually rather than as one big category. Once this is addressed we can identify which BPSD affect well-being the most and prioritise these when we develop ways to support caregivers at home. Nevertheless, our inconsistent findings may not just be due to a lack of information and varied types of analysis, they may also be due to the individual differences between what caregivers find upsetting. To fully understand the relationship between caregiver well-being and BPSD, we also need to examine the influence of caregiver variables such as caregiver strategies, acceptance, gender, their relationship with the person with dementia and their confidence. We can then work out whether clinicians should be providing different kinds of support to different caregivers, depending on their circumstances.

The full paper “A systematic review of the relationship between behavioral and psychological symptoms (BPSD) and caregiver well-being” is available free of charge for a limited time here.

The commentary paper “Progress in BPSD research: analyzing individual BPSD might hold the key to better support caregivers” by Nicola T. Lautenschlager is also available free of charge for a limited time here.


Do Video Games Cause Violent Behavior? More Then 200 Academics Think Not

The APA recently released findings that stated there while there was not a “single” cause for aggression; violent video games can play a role. The APA set up a team to go over studies and papers that were published on the subject between 2005 and 2013.

The paper reports, “The research demonstrates a consistent relation between violent video game use and increases in aggressive behaviour, aggressive cognitions and aggressive affect, and decreases in pro-social behaviour, empathy and sensitivity to aggression.”


The research for the paper was done primariliy though meta-analysis. It looked at the results of a number, hundreds, of studies and tried to find patterns and parallels. “While there is some variation among the individual studies, a strong and consistent general pattern has emerged from many years of research that provides confidence in our general conclusions,” said task force chairman Mark Appelbaum.

However, the research team’s findings have not been met with open arms. A group of more than 200 academics made up of “media scholars, psychologists and criminologists” have released an open letter to the APA opposing the findings. They suggest that the methodology of the study is inherently unsound. Much of the surveyed papers and studies that the APA used have not been peer reviewed, the open letter criticizes the methodology of the taskforce’s study and findings.

The notion that violent video games may cause aggression is a strongly contested one. It has historically been a scapegoat for violent behavior particularly in adolescents and teens. And while people don’t deny an effect of games, many deny the correlation between violent video games and outright violence:

“I fully acknowledge that exposure to repeated violence may have short-term effects – you would be a fool to deny that – but the long-term consequences of crime and actual violent behaviour, there is just no evidence linking violent video games with that,” says Dr Mark Coulson, one of the signatories of the letter told BBC. “If you play three hours of Call of Duty you might feel a little bit pumped, but you are not going to go out and mug someone.”

The rating system for video games can also be tricky. The US goes by the Entertainment Software Rating Board (ESRB) and begins with “eC” (Early Childhood) and progresses to “AO” (Adults 18+ Only). The rating system however has been controversial from the beginning with critics saying that the ESRB has gotten more lax on their “M” (Mature) rating and the games have gotten progressively more violent without receiving an AO rating.

In the letter to the APA the writers acknowledged that youth violence is currently “at a 40-year low” and that the “statistical data are simply not bearing out this concern and should not be ignored.”

The letter ends with a striking call for better data and research, “Policy statements based on inconsistent and weak evidence are bad policy and over the long run do more harm than good, hurting the credibility of the science of psychology.” With an overwhelming number of signatories, their message should not be ignored.

Toddlers’ aggression found to be associated with genetic factors

Kids fighting

The development of physical aggression in toddlers is strongly associated with genetic factors and to a lesser degree with the environment, according to a new study led by Eric Lacourse of the University of Montreal and its affiliated CHU Sainte-Justine Hospital. Lacourse’s team worked with the parents of identical and non-identical twins to evaluate and compare their behaviour, environment and genetics.

“The gene-environment analyses revealed that early genetic factors were pervasive in accounting for developmental trends, explaining most of the stability and change in physical aggression, ” Lacourse said. “However, it should be emphasized that these genetic associations do not imply that the early trajectories of physical aggression are set and unchangeable. Genetic factors can always interact with other factors from the environment in the causal chain explaining any behaviour.”

Over the past 25 years, research on early development of physical aggression has been highly influenced by social learning theories that suggest the onset and development of physical aggression is mainly determined by accumulated exposure to aggressive role models in the social environment and the media. However, the results of studies on early childhood physical aggression, initiated by the University of Montreal team, indicate that physical aggression starts during infancy and peaks between the ages of 2 and 4. Although for most children the use of physical aggression peaks during early childhood, these studies also show that there are substantial differences in both frequency at onset and rate of change of physical aggression due to the interplay of genetic and environmental factors over time. Genetically informed studies of disruptive behavior and different forms of aggression across the lifespan generally conclude that genetic factors account for approximately 50% of the variance in the population.

Lacourse and his colleagues posited and tested three general patterns regarding the developmental roles of genetic and environmental factors in physical aggression. First, the most consensual and general point of view is that both sources of influence are ubiquitous and involved in the stability of physical aggression. Second, a “genetic set point” model suggests a single set of genetic factors could account for the level of physical aggression across time. A third pattern labeled ‘genetic maturation’ postulates new sources of genetic and environmental influences with age.

“According to the genetic maturation hypothesis, new environmental contributions to physical aggression could be of short duration in contrast to genetic factors,” Lacourse explained.

Read the full article here.

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