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.


A provisional consensus clinical and research definition for Agitation in cognitive disorders

Cloud 3 (1)

The January International Psychogeriatrics Article of the Month is entitled ‘Agitation in cognitive disorders: International Psychogeriatric Association provisional consensus clinical and research definition’ by Jeffrey Cummings, Jacobo Mintzer, Henry Brodaty, Mary Sano et al.

Agitation is common across neuropsychiatric disorders and contributes to disability, institutionalization, and diminished quality of life for patients and their caregivers. There is no consensus definition of agitation and no widespread agreement on what elements should be included in the syndrome.

Agitation is a common clinical manifestation of many neuropsychiatric disorders. It is a frequent manifestation of Alzheimer’s disease (AD), frontotemporal dementia (FTD), dementia with Lewy bodies (DLB), and other dementia but also occurs in schizophrenia, bipolar illness, and depression. While agitation may include aggressive behaviors, it is not identical to aggression, and agitation can occur without aggression (e.g. pacing, rocking, repetitious mannerisms).

The International Psychogeriatric Association (IPA) formed an Agitation Definition Work Group (ADWG) to develop a provisional consensus definition of agitation in patients with cognitive disorders that can be applied in epidemiologic, non-interventional clinical, pharmacologic, non-pharmacologic interventional, and neurobiological studies. A consensus definition will facilitate communication and cross-study comparison and may have regulatory applications in drug development programs.

The ADWG implemented a transparent process that included nearly 1,000 survey respondents and engaged the memberships of the IPA, IPA affiliates, and other organizations involved in the care and research of neuropsychiatric disorders in patients with cognitive impairment. The group used a combination of electronic, face-to-face, and survey-based strategies to develop a consensus based on agreement of a majority of participants. Nine-hundred twenty-eight respondents participated in the different phases of the process.

An initial survey provided valuable insights from those involved in the care of agitated patients, and key elements of the definition were identified. Of the items listed as possible behaviors to be included in a definition of agitation, the following were endorsed by at least 50% of the respondents: pacing, aimless wandering, verbal aggression, constant unwarranted requests for attention or help, hitting others, hitting self, pushing people, throwing things, general restlessness, screaming, resistiveness, hurting self, hurting others, tearing things or destroying property, shouting, and kicking furniture. This information guided the elements included in the definition by the ADWG.

Agitation was defined broadly as: (1) occurring in patients with a cognitive impairment or dementia syndrome; (2) exhibiting behavior consistent with emotional distress; (3) manifesting excessive motor activity, verbal aggression, or physical aggression; and (4) evidencing behaviors that cause excess disability and are not solely attributable to another disorder (psychiatric, medical, or substance-related). A majority of the respondents rated all surveyed elements of the definition as “strongly agree” or “somewhat agree” (68–88% across elements). A majority of the respondents also agreed that the definition is appropriate for clinical and research applications.

The development of a provisional definition of agitation is the first step in advancing a research agenda for the definition. Not all elements were unanimously endorsed; a consensus was achieved on all aspects of the definition. Validity studies using other agitation assessments, reliability of the application of the definition, usefulness in clinical trials, usefulness in non-pharmacologic research, and real-world application in clinical and healthcare settings will lead to refinements and adjustments that will enhance the definition and advance the study of neuropsychiatric syndromes in cognitive impairment disorders.


The full paper “Agitation in cognitive disorders: International Psychogeriatric Association provisional consensus clinical and research definition” has been published Open Access and is available here.

The commentary on the paper, “Defining agitation in the cognitively impaired–a work in progress” is also available free of charge here.

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