Redefining Behaviour and Psychological Symptoms of Dementia
Saturday, June 17th, 2023
Dementia describes a collection of symptoms caused by disorders affecting the brain. In addition to the more familiar cognitive symptoms such as memory loss and language difficulties, dementia can also encompass non-cognitive symptoms such as agitation, anxiety, apathy, depression, and disinhibition. These symptoms are collectively termed as “Behaviours and Psychological Symptoms of Dementia. The term was developed to guide clinical care. However, people with dementia and their carers colloquially report that this terminology does not fit with their lived experience, and that they prefer other terms.
Nothing about me without me
A team of Australian researchers recently set out to more formally obtain the views of people with dementia and their families, on the Behaviours and Psychological Symptoms of Dementia. Recruiting through the StepUp for Dementia Research platform, semi-structured one-on-one interviews were performed with twenty-one people with a diagnosis of dementia and twenty family members or care partners. Participants were asked to describe the symptoms in their own words as they had experienced or observed them, as well as their interpretation of the cause.
Responsive Behaviours to a changing world
A thematic analysis of the interview transcripts revealed that people with dementia and families/care partners used alternative terms to the professional Behavioural and Psychological Symptoms of Dementia framework. When it came to perspectives about the causes of these symptoms, people with dementia interpreted them as a reaction to changing circumstances. Whilst both people with dementia and families/care partners, also saw the symptoms as being due to cognitive decline. Moreover, participants felt that “getting stuck” in past trauma memories and previous mental health history contributed to difficult emotions, and therefore make disentangling experiences caused by dementia-related brain changes and pre-existing psychological symptoms difficult. The findings also highlighted that ‘agitation’ and ‘anxiety’ may be intrinsically linked, and progress from initial and reasonable feelings of worry about the future and loss of skills.
Heeding the nuance
All participants proactively volunteered to take part in the study so may have different motivations or values that mean their responses are not representative of all people with experience of dementia. The results advocate for an updated individualised, less stigmatised, reconceptualization of Behaviours and Psychological Symptoms of Dementia. Targeting worry and anxiety and educating care staff and families to better understand changed “agitative” behaviour could be one example However, it could be that the terminology is appropriate, and it is more about being careful not to use the term to objectify individuals.