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The aim of the study was to establish the feasibility of delivering a structured post-diagnosis information and support program to dyads (persons living with dementia or mild cognitive impairment and family carers) in two primary care settings.
A two-phase explanatory mixed-method approach guided by the Bowen Feasibility Framework focused on acceptability, implementation, adaptation, integration and efficacy of a five-part programme. In phase 1, the quantitative impact of the programme on the dyadic programme recipients' self-efficacy, quality of life, dyadic relationship and volume of care was measured. In phase 2, inductive content analysis focused on nurse and dyad participant experiences of the programme. Quantitative and qualitative data were reviewed to conclude each element of feasibility.
Four registered nurses working within the participating sites were recruited, trained as programme facilitators and supported to deliver the programme. Eligible dyads attending the respective primary health clinics were invited to participate in the programme and complete surveys at three time points: recruitment, post-programme and 3-month follow-up. Post-programme semi-structured interviews were conducted with dyads and programme facilitators.
Twenty-nine dyads completed the program; the majority were spousal dyads. The programme proved acceptable to the dyads with high retention and completion rates. Implementation and integration of the programme into usual practice were attributed to the motivation and capacity of the nurses as programme facilitators. Regarding programme efficacy, most dyads reported they were better prepared for the future and shared the plans they developed during the programme with family members.
Implementing a structured information and support programme is feasible, but sustainability requires further adaptation or increased staff resources to maintain programme fidelity. Future research should consider selecting efficacy measures sensitive to the unique needs of people living with dementia and increasing follow-up time to 6 months.
This study established the feasibility of registered nurses delivering a post-diagnosis information and support programme for people living with early-stage dementia or mild cognitive impairment and their informal carers in primary care settings. The motivation and capacity of nurses working as programme facilitators ensured the integration of the programme into usual work, but this was not considered sustainable over time. Family carer dyads reported tangible outcomes and gained confidence in sharing their diagnosis with family and friends and asking for assistance. Findings from this study can be used to provide direction for a clinical trial investigating the effectiveness of the structured information and support programme in the primary care setting.
The authors have adhered to the EQUATOR STROBE Statement.
A public hospital memory clinic and general medical practice participated in project design, study protocol development and supported implementation.
To evaluate registered nurses' beliefs and related factors regarding pain assessment in people living with dementia.
A descriptive cross-sectional survey was conducted between July 2022 and April 2023.
An online survey comprised of demographics, knowledge scale, and beliefs scale relating to pain assessment in dementia was distributed to registered nurses (RNs) caring for people living with dementia in Australia.
RNs (N = 131) completed the survey. Most respondents were females (87.0%) and self-identified as Caucasian (60.3%). The mean beliefs score was 72.60 (±6.39) out of a maximum possible score of 95. RNs' beliefs about pain assessment varied based on their education, dementia pain assessment knowledge, nursing experience, and ethnicity. Hierarchical multiple regression analysis revealed factors significantly related to the beliefs score (i.e. education and dementia pain assessment knowledge).
The relationship between education and knowledge, and the beliefs score indicates the potential to improve RNs' knowledge and overcome their erroneous beliefs about pain assessment in dementia.
Education and training in assessing pain in people living with dementia should be tailored to overcome RNs' misconceived beliefs. These programmes should be integrated into continuous learning programmes.
Some RNs' beliefs about pain assessment in dementia were not evidence-based, and knowledge and educational status were the strongest factors related to RNs' beliefs. RNs' erroneous beliefs about pain assessment in dementia need to be addressed to improve pain assessment and management. Researchers should explore the potential of educational interventions to overcome RNs' misconceived beliefs about pain assessment in dementia.
This study was reported adhering to the Strengthening the Reporting of Observational Studies in Epidemiology checklist.
RNs caring for people living with dementia participated as survey respondents. Additionally, RNs were involved in the pre-testing of the study's survey instrument.
To identify specific facial expressions associated with pain behaviors using the PainChek application in residents with dementia.
This is a secondary analysis from a study exploring the feasibility of PainChek to evaluate the effectiveness of a social robot (PARO) intervention on pain for residents with dementia from June to November 2021.
Participants experienced PARO individually five days per week for 15 min (once or twice) per day for three consecutive weeks. The PainChek app assessed each resident's pain levels before and after each session. The association between nine facial expressions and the adjusted PainChek scores was analyzed using a linear mixed model.
A total of 1820 assessments were completed with 46 residents. Six facial expressions were significantly associated with a higher adjusted PainChek score. Horizontal mouth stretch showed the strongest association with the score, followed by brow lowering parting lips, wrinkling of the nose, raising of the upper lip and closing eyes. However, the presence of cheek raising, tightening of eyelids and pulling at the corner lip were not significantly associated with the score. Limitations of using the PainChek app were identified.
Six specific facial expressions were associated with observational pain scores in residents with dementia. Results indicate that automated real-time facial analysis is a promising approach to assessing pain in people with dementia. However, it requires further validation by human observers before it can be used for decision-making in clinical practice.
Pain is common in people with dementia, while assessing pain is challenging in this group. This study generated new evidence of facial expressions of pain in residents with dementia. Results will inform the development of valid artificial intelligence-based algorithms that will support healthcare professionals in identifying pain in people with dementia in clinical situations.
The study adheres to the CONSORT reporting guidelines.
One resident with dementia and two family members of people with dementia were consulted and involved in the study design, where they provided advice on the protocol, information sheets and consent forms, and offered valuable insights to ensure research quality and relevance.
Australian and New Zealand Clinical Trials Registry number (ACTRN12621000837820).
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