An Advance Care Planning Programme for Persons With Early Stage Dementia in the Community

NCT04491578 | Completed

• 1 other identifier: HMRF 03180198
• Study Type: interventional
• Target: 100
• Locations: 1 country
• Sites: 10

Brief Summary

Advance care planning (ACP) has been widely advocated for persons with early stage dementia (PWEDs) and persons with mild cognitive impairment (MCI). This proposed study attempts to promote the uptake of ACP for this population and their family caregivers in the community and to examine the effects of an ACP programme "Have a Say" for this population. It is hypothesized that participants received the intervention will be more engaged in ACP and their dyadic concordance on end-of-life care preference with their family caregivers will be higher after the intervention.

Conditions

Dementia Mild; Mild Cognitive Impairment

Keywords

advance care planning

Outcome Measures

Primary Outcomes (1)

• Change in advance care planning engagement

  The behavior change process in ACP behaviours is measured using a 9-item ACP engagement survey. It covers two sub-scales, self-efficacy and readiness, of ACP engagement. Each item is rated on a 5-point likert scale. The higher score means the higher level of engagement for the ACP behaviour.

  Baseline, immediately after the intervention, 1 month follow up

Secondary Outcomes (1)

• Change in dyadic concordance of end-of-life care preferences

  Baseline, immediately after the intervention, 1 month follow up

Other Outcomes (2)

• Depression

  Baseline, immediately after the intervention, 1 month follow up

• Caregivers' stress

  Baseline, immediately after the intervention, 1 month follow up

Study Arms (1)

ACP programme

EXPERIMENTAL

It is a theory-driven ACP programme specifically designed for PWEDs or persons with MCI and their family caregivers. The intervention is underpinned by the Bandura's self-efficacy model and shared decision-making model.

Behavioral: ACP programme "Have a Say"

Interventions

ACP programme "Have a Say" BEHAVIORAL

Each dyad of participants will receive a 4-session ACP programme, which consists of educational components, guided reflection, and dyadic ACP discussion, guided by ACP facilitators and an ACP booklet. It is composed of 2 group-based sessions and 2 dyadic discussions. One hour for each session. The group-based sessions are nurse-led, in which dyads of participants will be provided with information about the trajectory of dementia, their future healthcare needs and caring options. Their values and care preferences on future care will be elicited in a consistent manner. The dyadic sessions are led by trained ACP facilitator. Dyads of participants will be supported to have an individualized ACP discussion. By the end of the programme, each dyad of participants will be given an ACP booklet documenting the ACP process.

ACP programme

Eligibility Criteria

• Age: 55 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• aged 55 years or over;
• being Chinese,
• being a Cantonese speaker,
• having a Global Deterioration Scale score 3 or 4,
• having a designated family caregiver willing to participate in this study

You may not qualify if:

• non-communicable,
• mentally incompetent,
• received an ACP intervention,
• have previously signed an advance directive,
• have other life-limiting chronic illnesses with a life expectancy of less than 6 months.

Sponsors & Collaborators

• Hong Kong Metropolitan University: lead
• Chinese University of Hong Kong: collaborator
• Food and Health Bureau, Hong Kong: collaborator

Study Sites (10)

HKSKH Lok Man Alice Kwok Integrated Service Centre

Kowloon, Hong Kong

Location

Hong Kong Christian Service

Kowloon, Hong Kong

Location

Yang Memorial Methodist Social Service Choi Hung Community Centre for Senior Citizens

Kowloon, Hong Kong

Location

The Neighbourhood Advice-Action Council Sham Shui Po District Elderly Community Centre

Sham Shui Po, Hong Kong

Location

Jockey Club Centre for Positive Ageing

Shatin, Hong Kong

Location

The Neighbourhood Advice- Action Council Ma On Shan Neighbourhood Elderly Centre

Shatin, Hong Kong

Location

The Neighbourhood Advice-Action Council Tuen Mun District Integrated Services Centre for the Elderly

Tuenmen, Hong Kong

Location

Yau On Lutheran Centre for the Elderly

Tuenmen, Hong Kong

Location

HKSKH Chuk Yuen Canon Martin District Elderly Community Centre

Wong Tai Sin, Hong Kong

Location

Pentecostal Church of Hong Kong Ltd.Choi Wan Neighbourhood Elderly Centre

Wong Tai Sin, Hong Kong

Location

MeSH Terms

Conditions

Cognitive Dysfunction

Condition Hierarchy (Ancestors)

Cognition Disorders; Neurocognitive Disorders; Mental Disorders

Study Officials

• Chi Yan Cheryl Yeung, MN

  Chinese University of Hong Kong

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: HEALTH SERVICES RESEARCH
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Senior Lecturer

Model Details: Dyads of participants recruited from all elderly community centres will receive the ACP intervention

Study Record Dates

• First Submitted: June 6, 2020
• First Posted: July 29, 2020
• Study Start: January 9, 2021
• Primary Completion: August 31, 2022
• Study Completion: October 31, 2022
• Last Updated: March 16, 2023

Record last verified: 2023-03

Data Sharing

• IPD Sharing: Will not share

Locations

HK (10)