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

Hong Kong Metropolitan University

Status: Completed

Conditions: Mild Cognitive Impairment; Dementia Mild

Treatments: Behavioral: ACP programme "Have a Say"

Study type: Interventional

Funder types: Other

Identifiers

NCT04491578

HMRF 03180198

Details and patient eligibility

About

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.

Full 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.

Enrollment: 100 patients

Sex: All

Ages: 55+ years old

Volunteers: No Healthy Volunteers

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.

Trial design

Primary purpose: Health Services Research

Allocation: N/A

Interventional model: Single Group Assignment

Masking: None (Open label)

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100 participants in 1 patient group

ACP programme

Experimental group

Description:

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.

Treatment:

Behavioral: ACP programme "Have a Say"