sj-pdf-1-jgp-10.1177_08919887211060018 – Supplemental Material for The Bubble of Normalisation: A Qualitative Study of Carers of People With Dementia Who Do Not Seek Help for a Diagnosis

Supplemental Material, sj-pdf-1-jgp-10.1177_08919887211060018 for The Bubble of Normalisation: A Qualitative Study of Carers of People With Dementia Who Do Not Seek Help for a Diagnosis by Michelle Parker, Sally Barlow, Juanita Hoe and Leanne M. Aitken in Journal of Geriatric Psychiatry and Neurology</p

Chatting: Family Carers’ Perspectives on Receiving Support from Dementia Crisis Teams

Family caregivers are vital to enabling people with dementia to live longer in their own homes. For these caregivers, chatting with clinicians—being listened to empathetically and receiving reassurance—can be seen as not incidental but important to supporting them. This paper considers and identifies the significance of this relational work for family carers by re-examining data originally collected to document caregivers’ perspectives on quality in crisis response teams. This reveals that chatting, for family caregivers, comprises three related features: (i) that family caregivers by responding to a person’s changing and sometimes challenging needs and behaviors inhabit a precarious equilibrium; (ii) that caregivers greatly appreciate ‘chatting’ with visiting clinicians; and (iii) that while caregivers appreciate these chats, they can be highly critical of the institutionalized character of a crisis response team’s involvement with them.</p

MMSE and ACE scores.

<p>MMSE and ACE scores.</p

Secondary outcomes for intervention groups versus control in the year after intervention.

<p>Secondary outcomes for intervention groups versus control in the year after intervention.</p

Demographic characteristics of those presenting to memory clinics with suspected dementia.

<p>Demographic characteristics of those presenting to memory clinics with suspected dementia.</p

CONSORT flow diagram.

<p>CONSORT flow diagram.</p

Risk assessment for people living with dementia: a systematic review

Objective: This systematic review identified key components of risk assessment for people with dementia, examined attitudes toward risk identification and risk assessment, and appraised existing risk assessment tools. Methods: Systematic searches of five databases on two platforms (EBSCO, OVID) and gray literature databases (Open Grey, Base) were conducted. Studies were screened for inclusion based on predetermined eligibility criteria and quality assessed using the Mixed Methods Appraisal Tool. Findings were tabulated and synthesized using thematic synthesis. Results: Our review found people with dementia, their family carers, and healthcare professionals differed in how risk is conceptualized, with views being shaped by media perceptions, personal experiences, socio-cultural influences, dementia knowledge, and dementia severity. We found that mobilization (causing falls inside and getting lost outside) is the most frequently identified risk factor. Our findings show people with dementia are generally risk-tolerant, while healthcare professionals may adopt risk-averse approaches because of organizational requirements. We found factors that disrupt daily routines, living and caring arrangements, medication management, and unclear care pathways contribute toward adverse risk events. We discovered that most studies about risk and risk assessment scales did not consider insight of the person with dementia into risks although this is important for the impact of a risk. No risk instrument identified had sufficient evidence that it was useful. Conclusion: Accurate risk assessment and effective communication strategies that include the perspectives of people with dementia are needed to enable risk-tolerant practice. No risk instrument to date was shown to be widely acceptable and useful in practice.</p

Risk assessment for people living with dementia: a systematic review

Objective: This systematic review identified key components of risk assessment for people with dementia, examined attitudes toward risk identification and risk assessment, and appraised existing risk assessment tools. Methods: Systematic searches of five databases on two platforms (EBSCO, OVID) and gray literature databases (Open Grey, Base) were conducted. Studies were screened for inclusion based on predetermined eligibility criteria and quality assessed using the Mixed Methods Appraisal Tool. Findings were tabulated and synthesized using thematic synthesis. Results: Our review found people with dementia, their family carers, and healthcare professionals differed in how risk is conceptualized, with views being shaped by media perceptions, personal experiences, socio-cultural influences, dementia knowledge, and dementia severity. We found that mobilization (causing falls inside and getting lost outside) is the most frequently identified risk factor. Our findings show people with dementia are generally risk-tolerant, while healthcare professionals may adopt risk-averse approaches because of organizational requirements. We found factors that disrupt daily routines, living and caring arrangements, medication management, and unclear care pathways contribute toward adverse risk events. We discovered that most studies about risk and risk assessment scales did not consider insight of the person with dementia into risks although this is important for the impact of a risk. No risk instrument identified had sufficient evidence that it was useful. Conclusion: Accurate risk assessment and effective communication strategies that include the perspectives of people with dementia are needed to enable risk-tolerant practice. No risk instrument to date was shown to be widely acceptable and useful in practice.</p

Additional file 1 of Achieving Quality and Effectiveness in Dementia Using Crisis Teams (AQUEDUCT): a study protocol for a randomised controlled trial of a Resource Kit

Additional file 1. Spirit checklist

Process evaluation of a new psychosocial goal-setting and manualised support intervention for Independence in Dementia (NIDUS-Family)

Introduction:We report a mixed-methods process evaluation embedded within a randomised controlled trial. We aimed to test and refine a theory of change model hypothesising key causal assumptions to understand how the New Interventions for Independence in Dementia Study (NIDUS)-Family (a manualised, multimodal psychosocial intervention), was effective relative to usual care, on the primary outcome of Goal Attainment Scaling (GAS) over 1 year. Methods: In 2021–2022, intervention-arm dyads completed an acceptability questionnaire developed to test causal assumptions. We conducted qualitative interviews with dyads and intervention facilitators, purposively selected for diverse follow-up GAS scores. We collected observational data from intervention session recordings. We thematically analysed data, then integrated qualitative and quantitative data. Results:174/204 (85.3%) dyads allocated to NIDUS-Family, fully completed it, 18 partially completed, while 12 received no intervention. We interviewed 27/192 (14%) of dyads receiving any sessions, and 9/10 facilitators; and observed 12 sessions. 47/192 (24.5%) of carers completed the acceptability questionnaire. We identified four themes: (A) ‘Someone to talk to helps dyads feel supported’; (B) ‘NIDUS-Family helps carers change their perspective’; (C) ‘Personalisation helps people living with dementia maintain their identity’ and (D) ‘Small steps help dyads move forward’. Conclusion: Key causal pathway mechanisms were: a respectful, trusting and impartial relationship with the facilitator: supporting the development of meaningful goals and support to find manageable solutions. Core implementation factors were delivery of the modules from a consistent facilitator across regular sessions. Core contextual factors influencing these mechanisms were dyadic participation and understanding of abilities.</p