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

Not Applicable

Completed

• Conditions: Mild Cognitive Impairment; Dementia Mild

• Registration Number: NCT04491578
• Lead Sponsor: Hong Kong Metropolitan University

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.

Detailed Description

This study aims to evaluate the impacts of an advance care planning (ACP) programme "Have a Say" for persons with early stage dementia (PWEDs) or MCI and their family caregivers in the community. A quasi-experimental study with repeated blinded outcome assessment will be conducted to assess the effects of an ACP programme on dyads of PWEDs or persons with MCI and their family caregivers recruited from elderly community centres. Individuals who have a clinical diagnosis of any form of dementia at the early stage or MCI or have a Global Deterioration Score (GDS) 3 or 4 will be eligible to this study. Participants will receive a 4-session ACP programme. It includes an educational component, guided reflection and ACP discussion through a series of group-based activity and dyadic discussion delivered by trained ACP facilitator and guided by an ACP booklet. 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. They will be supported to have an individualized ACP discussion. The primary study outcome is the ACP engagement level of PWEDs. Secondary outcome is the dyadic concordance on end-of-life care preference. Adverse outcomes such as depression and caregivers' burden will also be evaluated. Data collection will be conducted at baseline, immediately after, and one-month after the intervention.

Study Timeline

• Study First Submitted: 2020-06-06
• Study First Submitted QC: 2020-07-28
• Study First Posted: 2020-07-29
• Study Start: 2021-01-09
• Primary Completion: 2022-08-31
• Study Completion: 2022-10-31
• Status Verified: 2023-03
• Last Update Submitted: 2023-03-14
• Last Update Posted: 2023-03-16

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 100

Inclusion Criteria

• 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

Exclusion Criteria

• 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.

Study & Design

• Study Type: INTERVENTIONAL
• Study Design: SINGLE_GROUP

Primary Outcome Measures

Name	Time	Method
Change in advance care planning engagement	Baseline, immediately after the intervention, 1 month follow up	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.

Secondary Outcome Measures

Name	Time	Method
Change in dyadic concordance of end-of-life care preferences	Baseline, immediately after the intervention, 1 month follow up	The dyadic concordance on end-of-life care preferences is measured by a modified Life Support Preferences Questionnaire (LSPQ). Dyads of participants are invited to answer individually, simultaneously but separately for a hypothetical scenario featured the prospect of developing into advanced stage of dementia. PWEDs are asked to indicate their preference for receiving three discrete life-sustaining medical treatments (cardio-pulmonary resuscitation, mechanical ventilation and tube feeding) using a 3 point Likert Scale (1=want to attempt; 2=refuse; 3= not sure). The dyadic congruence is determined based on whether both of them choose the same option for end-of-life treatments, regardless that was for active treatment or not, they gained a score of one. Given the nature of ACP is for the dyad to communicate preferences on end-of-life care, no score would be given if anyone in the dyad chose the "not sure" response.

Trial Locations

Locations (10)

HKSKH Lok Man Alice Kwok Integrated Service Centre; 🇭🇰 Kowloon, Hong Kong

Hong Kong Christian Service; 🇭🇰 Kowloon, Hong Kong

Yang Memorial Methodist Social Service Choi Hung Community Centre for Senior Citizens; 🇭🇰 Kowloon, Hong Kong

Jockey Club Centre for Positive Ageing; 🇭🇰 Sha Tin, Hong Kong

The Neighbourhood Advice- Action Council Ma On Shan Neighbourhood Elderly Centre; 🇭🇰 Sha Tin, Hong Kong

The Neighbourhood Advice-Action Council Sham Shui Po District Elderly Community Centre; 🇭🇰 Sham Shui Po, Hong Kong

The Neighbourhood Advice-Action Council Tuen Mun District Integrated Services Centre for the Elderly; 🇭🇰 Tuen Mun, Hong Kong

Yau On Lutheran Centre for the Elderly; 🇭🇰 Tuen Mun, Hong Kong

HKSKH Chuk Yuen Canon Martin District Elderly Community Centre; 🇭🇰 Wong Tai Sin, Hong Kong

Pentecostal Church of Hong Kong Ltd.Choi Wan Neighbourhood Elderly Centre; 🇭🇰 Wong Tai Sin, Hong Kong