Partnership in Safeguarding People With Dementia From Primary and Social Care Perspectives

"Adult safeguarding is everyone's responsibility". The Care Act 2014 makes safeguarding a legal duty. It provides local authorities and other agencies in England with a responsibility to protect adults with care and support needs from abuse and neglect. This is done most effectively when all relevant agencies work together. This is particularly important for people living with dementia, as they are at higher risk of abuse or neglect. Such abuse is most common in their own homes and care settings. Primary and social care professionals are likely to have regular contacts with older people, hence have opportunities for early identification and prevention of abuse. However, little is known about how primary care practitioners work in partnership with social care and other agencies to investigate and manage abuse.

Aims:

This project will outline how health professionals in primary care settings understand and respond to abuse and what their understandings of safeguarding law and policy are. It will also identify how social services departments assess and manage referrals relating to people living with dementia in primary care settings. Furthermore, the study will analyse the experiences of people with dementia and families who are at the centre of safeguarding

Methods:

This study has three phases. In phase 1, the investigators will synthesise current research and practice evidence to develop a theory of safeguarding conceptualisation and process. In phase 2, the investigators will analyse national statistics on safeguarding (NHS digital dataset), ageing and dementia data (English Longitudinal Study of Ageing) to understand patterns of reporting and how they vary across location, gender, ethnicity and time period. In phase 3, the investigators will interview GPs, social workers, safeguarding leads, independent advocates, people with dementia, family members, support workers, carers and other professionals who make or receive referrals via primary care. As part of phase 3 group discussions will also be conducted, in which professionals will come together to share their experiences, and will identify approaches for preventing abuse and collaboration amongst relevant agencies. Phase 3 will inform the development of complex case studies, drawing on data from phases 1 and 2.

Impact:

This study will help develop practice guidance for professionals, to aid multi-agency collaboration in safeguarding cases specific to dementia. This will be developed in consultation with the PPIE (Patient and Public Involvement and Engagement) members and practitioners. Videos will also be produced and plain English versions of case studies of complex safeguarding scenarios and strategies in consultation with safeguarding leads, law experts, training providers and other key stakeholders. Experts by experience (working with, caring for or living with dementia), will be able to guide the team with cultural nuances and appropriateness to ensure that the material developed is sensitive to all populations. An info graph/pictograph displaying signs of abuse, staying safe and what to do, aimed at people with dementia and family will be compiled. The investigators will liaise with national safeguarding leads so that this information can be displayed in GP clinics. Furthermore, the investigators will contact social responsibility personnel for supermarkets and discuss the potentials of wider circulation for displaying this information in stores.

Study Overview

• Status: Recruiting
• Conditions: Dementia; Abuse Client; Neglect; Care, Malnutrition
• Intervention / Treatment: Other: Not applicable as not an intervention - HCP's; Other: Not applicable as not an intervention - PLwD and family/carers

• Study Type: Observational
• Enrollment (Estimated): 50

Contacts and Locations

• Study Contact: Name: Katarzyna Szulewska; Phone Number: 01613067689; Email: katarzyna.szulewska@manchester.ac.uk
• Study Contact Backup: Name: Reena Lasrado; Email: reena.lasrado@manchester.ac.uk

Study Locations

• United Kingdom
  • Leeds, United Kingdom
    • Recruiting
    • CRN
    • Contact: Emma Oughton
  • Leeds, United Kingdom
    • Not yet recruiting
    • Leeds Local Authority
    • Contact: Annemarie Ulph
  • Manchester, United Kingdom
    • Recruiting
    • CRN
    • Contact: Emma Oughton
  • Manchester, United Kingdom
    • Not yet recruiting
    • Greater Manchester Local Authority
    • Contact: Tina Mallon
  • Southport, United Kingdom
    • Recruiting
    • CRN
    • Contact: Emma Oughton

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: Yes

• Sampling Method: Probability Sample

Study Population

Tentatively this study will aim to recruit 20-30 health and social care professionals (interviews-20, focus groups-10) making referrals via GP's who have experiences of safeguarding in the context of dementia. This study also aims to recruit between 15-20 people with dementia and carers/family members involved in safeguarding, who will be accessed via primary and social care practitioners.

Description

Inclusion Criteria:

• Health and social care professionals:

  • GPs, Nurses, social workers, mental health professionals, support workers, IMCA (independent mental capacity advocates) and other health care professionals in GP surgeries and integrated social care hubs with experience in facilitating safeguarding.
  • Safeguarding lead in GP surgeries, social care organisations and other organisations (advocacy agencies).
  • Professionals from third-sector organisations who have previously raised safeguarding concerns regarding adults living with Dementia

Service users and carers/family:

• People with dementia who have been involved in the safeguarding process, with mental capacity to consent.
• Family members of people with dementia who have been previously involved in the safeguarding process
• Individuals who were involved in a safeguarding inquiry in the past, which is NOT ongoing at the time of interview.

Exclusion Criteria:

• Health and social care professionals at GP practices, social care organisations and third sector organisations without experiences of safeguarding older adults and unwilling to participate in the study.

  • People with dementia who lack capacity to consent.
  • Individuals involved in an active and ongoing safeguarding inquiry.

Study Plan

How is the study designed?

Number of groups / cohorts

4

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
Health and Care Professionals; GP's, nurses, social workers, mental health professionals, support workers, Independent mental capacity advocates (IMCA), and other HCP's working in GP surgeries and integrated social care hubs. Safeguarding leads in GP surgeries, social care organisations and other relevant organisations. Professionals from third-sector organisations who have previous experience of safeguarding.	Other: Not applicable as not an intervention - HCP's; Exploring the safeguarding process through interviews and a focus group.
People Living with Dementia; Who have been involved in the safeguarding process and have capacity to consent.	Other: Not applicable as not an intervention - PLwD and family/carers; Exploring the safeguarding process through interviews.
Paid carers of people living with dementia; Who have been involved in the safeguarding process.	Other: Not applicable as not an intervention - PLwD and family/carers; Exploring the safeguarding process through interviews.
Family members of people living with dementia; Who have been involved in the safeguarding process.	Other: Not applicable as not an intervention - PLwD and family/carers; Exploring the safeguarding process through interviews.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Trends in reporting of routinely collected safeguarding datasets - NHS digital	Number of reports of safeguarding concerns and section 42 enquiries in England. Type of risks, source of risks, location, age, gender, ethnicity, health condition.	September 2022 - March 2024
Trends in reporting of routinely collected safeguarding datasets - ELSA data	The prevalence of dementia across England, number of older people with dementia in receipt of care and who gave the care in each local authority in England.	data years: 2002-2017
Quality Outcomes Framework (QOF) Recorded Dementia Diagnoses	Rate of dementia diagnosis in each local authority district in England and demographic characteristics of those with dementia diagnosis in each NHS CCG in England.	data years: 2021-2022

Other Outcome Measures

Outcome Measure	Measure Description	Time Frame
Contexts, Mechanisms and Outcomes (CMO's) from the Rapid Realist Literature Review	The rapid realist review will investigate how health & social care professionals conceptualise and respond to risks of abuse and neglect involving people with dementia in England, UK. The review will be informed by Rameses guidelines and aims to develop initial programme theories.	September 2022 - March 2024
Interpretative Phenomenological Analysis (IPA) of Interviews	IPA of interview transcripts will lead to an in-depth understanding of the lived experiences of safeguarding from the perspective of health and social care professionals, people living with dementia, family caregivers and other relevant professionals.	September 2022 - March 2024
Interpretative Phenomenological analysis (IPA) of Focus Group - with health and care professionals	Lived experiences of safeguarding from the perspective of various professionals, including what worked, what did not work, understanding of legal thresholds, strategies for prevention and collaboration across agencies.	September 2022 - March 2024

Collaborators and Investigators

• Sponsor: University of Manchester

Study record dates

Study Major Dates

• Study Start (Estimated): May 1, 2023
• Primary Completion (Estimated): August 1, 2023
• Study Completion (Estimated): March 31, 2024

Study Registration Dates

• First Submitted: May 10, 2023
• First Submitted That Met QC Criteria: May 22, 2023
• First Posted (Actual): June 1, 2023

Study Record Updates

• Last Update Posted (Actual): June 1, 2023
• Last Update Submitted That Met QC Criteria: May 22, 2023
• Last Verified: May 1, 2023

More Information

Terms related to this study

• Keywords: Dementia; Abuse; Neglect; Safeguarding; Health and care professionals; Social care; Section 42
• Additional Relevant MeSH Terms: Mental Disorders; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurocognitive Disorders; Nutrition Disorders; Dementia; Malnutrition
• Other Study ID Numbers: IRAS ID: 319897

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: UNDECIDED

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No