Epidemiology of Faecal Incontinence for People with Dementia Living in the Community in New Zealand: A Retrospective Cohort Study Using interRAI Home Care Assessment Data.

INTRODUCTION: Globally there are few studies but wide variation in epidemiology of faecal incontinence (FI) for people living with dementia in the community. Our objectives are to identify 1-year period prevalence, 5-year incidence, and risks for faecal incontinence (FI) for people living with dementia. METHODS: A retrospective cohort study comprising International Residential Assessment Instrument Home Care version (interRAI-HC) assessments in a 5-year period in New Zealand (N=109964). For prevalence analysis, we selected a dementia cohort for a 1-year period from 1 Aug 2020 to 31 July 2021 (n=7775). For the incidence analysis, participants in the dementia cohort were followed up from the day of the first dementia diagnosis during the period 1 Aug 2016 and 31 July 2021. Dementia was identified by combining diagnosis of "Alzheimer's disease" and "Dementia other than Alzheimer's disease". Participants were coded with faecal incontinence if they were continent with a stoma, seldom incontinent, occasionally incontinent, often incontinent and incontinent. RESULTS: 1 year period (1 Aug 2020-31 July 2021) prevalence of FI was 26.7% (2082/7775) of PLWD. 5-year incident FI rate was 19.0 per 100 person years for PLWD and 12.3 per 100 person years for people without dementia. Controlling for risk factors for FI in both groups the hazard ratio for FI was 1.7 for PLWD. CONCLUSION: FI affects a significant proportion of people with dementia in NZ. interRAI-HC data could facilitate global epidemiological studies to estimate service or intervention need for people with dementia to redress or manage FI.

Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study.

BACKGROUND: The number of people living with dementia (PLWD) in Aotearoa New Zealand (NZ) was estimated at 96,713 in 2020 and it is anticipated that this number will increase to 167,483 by 2050, including an estimated 12,039 Maori (indigenous people of NZ) with dementia. Experiencing urinary incontinence (UI) or faecal incontinence (FI) is common for PLWD, particularly at the later stages of the disease. However, there is no robust estimate for either prevalence or incidence of UI or FI for PLWD in NZ. Although caregivers rate independent toilet use as the most important activity of daily living to be preserved, continence care for PLWD in the community is currently not systematised and there is no structured care pathway. The evidence to guide continence practice is limited, and more needs to be known about caregiving and promoting continence and managing incontinence for PLWD in the community. This project will seek to understand the extent of the challenge and current practices of health professionals, PLWD, caregivers and family; identify promising strategies; co-develop culturally appropriate guidelines and support materials to improve outcomes; and identify appropriate quality indicators so that good continence care can be measured in future interventions. METHODS AND ANALYSIS: A four-phase mixed methods study will be delivered over three years: three phases will run concurrently, followed by a fourth transformative sequential phase. Phase 1 will identify the prevalence and incidence of incontinence for PLWD in the community using a cohort study from standardised home care interRAI assessments. Phase 2 will explore continence management for PLWD in the community through a review of clinical policies and guidance from publicly funded continence services, and qualitative focus group interviews with health professionals. Phase 3 will explore experiences, strategies, impact and consequences of promoting continence and managing incontinence for PLWD in the community through secondary data analysis of an existing carers' study, and collecting new cross-sectional and longitudinal qualitative data from Maori and non-Maori PLWD and their caregivers. In Phase 4, two adapted 3-stage Delphi processes will be used to co-produce clinical guidelines and a core outcome set, while a series of workshops will be used to co-produce caregiver resources.

Self-regulation training for people with knee osteoarthritis: a protocol for a feasibility randomised control trial (MiNT trial).

Introduction: Knee osteoarthritis (OA) is a chronic secondary musculoskeletal pain condition resulting in disability, reduced quality of life, and high societal costs. Pain associated with knee OA is linked to increased sensitivity in sensory, cognitive, and emotional areas of the brain. Self-regulation training targeting brain functioning related to pain experience could reduce pain and its associated disability. Self-regulatory treatments such as mindfulness meditation (MM) and electroencephalography neurofeedback (EEG-NF) training improve clinical outcomes in people with knee OA. A feasibility clinical trial can address factors that could inform the design of the full trial investigating the effectiveness of self-regulation training programmes in people with knee OA. This clinical trial will evaluate the feasibility, safety, acceptability, experience and perceptions of the self-regulatory training programmes. Methods: The proposed feasibility trial is based on a double-blind (outcome assessor and investigators), three-arm (MM usual care, EEG-NF + usual care and usual care control group) randomised controlled parallel clinical trial. Participants with knee OA will be recruited from the community and healthcare practices. A research assistant (RA) will administer both interventions (20-min sessions, four sessions each week, and 12 sessions over three successive weeks). Feasibility measures (participant recruitment rate, adherence to interventions, retention rate), safety, and acceptability of interventions will be recorded. An RA blinded to the group allocation will record secondary outcomes at baseline, immediately post-intervention (4th week), and 3 months post-intervention. The quantitative outcome measures will be descriptively summarised. The qualitative interviews will evaluate the participants' experiences and perceptions regarding various aspects of the trial, which includes identifying the barriers and facilitators in participating in the trial, evaluating their opinions on the research procedures, such as their preferences for the study site, and determining the level of acceptability of the interventions as potential clinical treatments for managing knee OA. Maori participant perceptions of how assessment and training practices could be acceptable to a Maori worldview will be explored. The interviews will be audio-recorded and analysed thematically. Discussion: This trial will provide evidence on the feasibility, safety, and acceptability of the MM and EEG-NF training in people with knee OA, thus informing the design of a full randomised clinical control trial.