Research investigates views of people living with dementia

Researchers have completed a qualitative study investigating the views of people living with dementia, along with their families and care partners, to better understand changed behaviours that people experience.

HEIDI DOUGLASS | h.douglass@unsw.edu.au

Researchers from UNSW Sydney’s Dementia Centre for Research Collaboration and Centre for Healthy Brain Ageing (CHeBA) have completed a qualitative study investigating the views of people living with dementia, along with their families and care partners, to better understand changed behaviours that people experience. The research also identified the expectations of changed behaviours and views towards terminology.

The findings, published in a special issue in Frontiers in Psychiatry; research topic ‘Biological Basis and Therapeutics of Behavioral and Psychological Symptoms of Dementia (BPSD)’, indicate that a reconceptualisation of ‘BPSD’ is required in order to improve care and services for people living with dementia.

Changed behaviors - also known as BPSD and responsive behaviors - include agitation, anxiety, depression, and sleep disturbances.

Lead author, Dr Claire Burley said, “changed behaviours can have profound effects on people living with dementia as well as their families and carers.”

“Inappropriate use of medication, known as ‘chemical restraint’, is often used to control agitation and can have significant consequences for the person.”

Dr Claire Burley

The research highlights that ‘agitation’ and ‘anxiety’ are intrinsically linked and may progress from initial and very plausible feelings of worry (i.e., worry caused by loss in cognitive skills and fear about the future).

Co-Director of CHeBA and co-author, Professor Henry Brodaty, explained that the research suggests beneficial approaches may include targeting worry and anxiety in people living with dementia and educating care staff and families so that they better understand changed behaviors.

Many of the people living with dementia who were interviewed said that they wanted to be treated as they had been before they received their diagnosis. They were hesitant to take part in their usual social and physical activities because of concern about what others would think of them.

“Interventions that target increasing awareness of dementia in society and reducing stigma would be beneficial for people living with dementia,” said Professor Brodaty.

“There is a distinct need for more research that focuses on the perspectives of people living with a diagnosis of dementia, because major decisions regarding care are often made by families and healthcare professionals without consulting those affected."

Professor Henry Brodaty

“This research builds to a new paradigm of reconceptualising changed behaviours in dementia. Existing frameworks used to guide decisions may need to be updated, as our understanding of the impact that dementia has on people with lived experience increases,” said Dr Burley.

 

Scientia Professor Henry Brodaty conceptualised and supervised the study researchers. Professor Lynn Chenoweth and Dr Anne-Nicole Casey assisted with data analysis, interpretation and write-up.

The project was supported by StepUp for Dementia Research. Dr Burley was invited to give verbal presentations of findings from this research at the Australian Dementia Forum and at the Alzheimer’s Association International Conference 2021. The researchers are very grateful to all the people living with dementia and their families/ care partners who took part in this study and shared their experiences and views.