Reconceptualising Behavioral and Psychological Symptoms of Dementia: Views of People Living With Dementia and Families/Care Partners

Abstract

Background: Behavioral and psychological symptoms of dementia (BPSD, also known as neuropsychiatric symptoms (NPS), changed behaviors and responsive behaviors), occur in up to 90 percent of people living with dementia (PLWD). These symptoms and behaviors strongly correlate with functional and cognitive impairment and contribute to ~30% of overall dementia costs. As decisions regarding care and strategies for BPSD are generally based on professional frames of reference, this study investigates whether the perspectives of PLWD and families/care partner on BPSD terminology can inform a more nuanced conceptualization of BPSD.Methods: PLWD and families/care partners participated in one-on-one semi-structured interviews. A thematic iterative approach was used to code the data and identify common themes until theoretical saturation was reached. Themes were compared between groups. Data were analyzed deductively in relation to pre-existing terminology regarding BPSD, and inductively to discover new ideas on use of such terminology as perceived by PLWD and others.Results: Forty-one volunteers were interviewed: 21 PLWD, mean age 71 yrs, mean Mini-Mental State Examination score 25, and 20 family members/care partners. Three main themes emerged from the data: (1) descriptions of BPSD from people with lived experience compared to clinical terms, (2) viewpoints on interpreting causes, and (3) experiences of concurrent BPSD. The experiences described and terms used by PLWD and families/care partners differed from terms used in existing professional frameworks (e.g., “disinhibition” described as ‘loss of filter') and there were differences between PLWD and family members' interpretations of BPSD causes.Discussion/Conclusion: Reports from PLWD and families/carers describing their experiences of BPSD suggest a reconceptualization of BPSD terminology is needed to understand and de-stigmatize these symptoms and behaviors. For example, the term “agitated/hard to handle” would benefit by clearer, contextualized description, such as “frustrated with cognitive decline, discriminatory behavior and inadequate support systems.” In better understanding individual expressions of BPSD, families, professionals and societies will be able to respond in ways that are helpful for PLWD. An informed, integrated understanding of BPSD and improved terminology use will have the potential to improve the quality of care and support for PLWD.

Views of people living with dementia and their families/care partners: helpful and unhelpful responses to behavioral changes

“…(O'Brien et al, 2014). The study methods, including participant recruitment and consent procedures, are summarized here and described in more detail previously (Burley et al, 2021). The study team included two postdoctoral psychologists (CB and AC), Professor of Nursing and registered nurse (LC), and Scientia Professor of Ageing and Mental Health and psychogeriatrician (HB).…”

“…Few studies have investigated the views of people living with dementia and families/care partners on their lived experiences of behavioral changes, asked what they find helpful or unhelpful regarding behavioral changes, and what they consider to be appropriate terminology. The authors' previous qualitative research suggests that reconceptualizing BPSD terminology, to reflect the lived experiences and perceptions of the person living with dementia and behavioral changes, would likely encourage more person-centred approaches from families/ informal carers and healthcare staff (Burley et al, 2021).…”

“…Author CB conducted all interviews. People living with dementia and families/care partners were asked to describe any behavioral changes they experienced and were given examples following an open-ended question (results reported in Burley et al, 2021). They were then asked, "What have you found helpful/ unhelpful when you experienced (behavior/symptom using participant's wording)?…”

Promotors and barriers to the implementation and adoption of assistive technology and telecare for people with dementia and their caregivers: a systematic review of the literature

“…PwD are faced with a multitude of complex symptoms including, but not limited to, memory deficits, behavioral and psychological symptoms of dementia (BPSD), depression, and pain [3][4][5]. This results in increased caregiver burden in formal (health care professionals) and informal (friends and family) caregivers [6][7][8][9][10].…”

How do family carers and care-home staff manage refusals when assisting a person with advanced dementia with their personal care?

“…Behaviours viewed as related to dementia can be framed and termed in different ways, for example, what may be termed as aggression or agitation by professionals may be viewed as anger or frustration by people with dementia ( Burley et al, 2021 ). There may be similar discrepancies around the term ‘refusal of care’, which implies a deliberate act from the person with dementia.…”