Palliative Medicine

Journal Article Annotations
2021, 2nd Quarter

Palliative Medicine

Annotations by R Garrett Key, MD, Barbara Lubrano di Ciccone, MD
April, 2021

  1. Pain in Dementia: Prevalence and Association With Neuropsychiatric Behaviors.
  2. Family Caregiver Perspectives on Suffering of Persons With Severe Dementia: A Qualitative Study.

    PUBLICATION #1 — Palliative Medicine

    Pain in Dementia: Prevalence and Association With Neuropsychiatric Behaviors.
    Mustafa Atee, Thomas Morris, Stephen Macfarlane, Colm Cunningham

    Annotation

    The finding:
    In a national cross-sectional study of patients with behavioral and psychological symptoms of dementia (BPSD), pain was reported in 66% of patients. The presence of pain correlated with more frequent and severe behavioral symptoms.

    Strength and weaknesses:
    Strengths of the study are its large sample size, use of a standardized and dementia-specific pain measure for assessment, and availability of diagnostic information regarding subtypes of dementia. The retrospective, cross sectional design is fair, but a prospective design might allow for more careful data collection and documentation. Pain assessment and causality with respect to BPSD requires further investigation. Lastly, information about race or ethnicity were not part of the dataset which limits our understanding of how those factors may influence pain symptomatic presentations of dementia.

    Relevance:
    C-L psychiatrists are often called on to assist in management of agitation related to dementia in both inpatient and outpatient settings. Pain assessment in dementia is complex and increasingly difficult as the severity of dementia worsens. The high prevalence of pain conditions in people with dementia and suggestion that pain worsens agitation both speak to the importance of pain treatment as part of the management of behavioral and psychological symptoms in dementia.

    Type of study (EBM guide):
    Cohort study
    Retrospective cross-sectional analysis.


    PUBLICATION #2 — Palliative Medicine

    Family Caregiver Perspectives on Suffering of Persons With Severe Dementia: A Qualitative Study.
    Jeffrey Cardenas, Janine Roach, Alex Kopelowic

    Annotation

    The finding:
    Analyzing 27 in-depth interviews of family caregivers of persons with severe dementia (PWSD), the authors describe five dimensions of perceived suffering among PWSD: 1) untreated physical or behavioral symptoms, 2) emotional pain, 3) loss of agency, 4) loss of engagement with society, and 5) loss of personhood. When the above dimensions of suffering were left unaddressed, caregivers felt that PWSDs’ life had lost its meaning and thus, they began to question whether such a life was worth living. These caregivers then either expressed a wish for PWSD’s death and/or a refusal toward life-prolonging interventions. Conversely, caregivers who assessed that the PWSD was not suffering were more prepared to opt for life-prolonging interventions for the PWSD.

    Strength and weaknesses:
    The main strength of the study is the comprehensive nature of the interviews, which allowed detailed exploration of issues related to caregiver perception of PWSD suffering and its attendant impact. The main limitation is that data were captured from the perspective of caregivers rather than directly from the PWSDs. Additionally, the authors noted that they were unable to differentiate between acute and chronic pain or assess the relationship between pain and emotional and behavioral problems.

    Relevance:
    C-L Psychiatrists frequently care for patients with severe dementia and help families understand and cope with behavioral and physical symptoms. Caregivers’ perceptions of suffering of family members with severe dementia impacts end-of-life decision-making. This study adds to the growing understanding of end-of-life care in PWSDs and their caregivers. Results might catalyze the development of tools to assess suffering in severe dementia and optimize person-centered interventions for care of PWSDs

    Type of study (EBM guide):
    Cohort study