An Advance Care Planning Programme for Persons With Early Stage Dementia or Mild Cognitive Impairment in the Community

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Recruiting
participants needed

114
sponsor

The Open University of Hong Kong

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Updated on 19 February 2024

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cognitive impairment

dementia

mild cognitive impairment

Summary

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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 in the intervention group will be more engaged in ACP and their dyadic concordance on end-of-life care preference with their family caregivers will be significantly higher than that in the control group.

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 mild cognitive impairment and their family caregivers in the community. A randomized controlled trial 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 have a Global Deterioration Score (GDS) 3 or 4 will be eligible to this study. Participants in the experimental group 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. Individuals assigned to the control group will receive attention-control health talks. 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, one month and three-months after the intervention.

Details

Condition	Mild Cognitive Impairment, Dementia Mild
Age	18years - 100years
Treatment	ACP programme "Have a Say", Attention-control health talks
Clinical Study Identifier	NCT04491578
Sponsor	The Open University of Hong Kong
Last Modified on	19 February 2024

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Eligibility		Yes	No	Not Sure
Inclusion Criteria
	aged 18 years or over
	being Chinese
	being a Cantonese speaker
	having a formal diagnosis of early stage dementia
	having a Global Deterioration Scale score 3-4
	having a designated family caregiver in direct contact
Exclusion Criteria
	non-communicable
	mentally incompetent
	received an ACP intervention
	have previously signed an advance directive
	have other life-limiting chronic illnesses

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An Advance Care Planning Programme for Persons With Early Stage Dementia or Mild Cognitive Impairment in the Community