Clinical trial NCT04491578: An Advance Care Planning Programme for Persons With Early Stage Dementia in the Community
Official title: Effects of an Advance Care Planning Programme for Persons With Early Stage Dementia in the Community: A Quasi-experimental Study
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Dementia Mild
Mild Cognitive Impairment
Keywords: advance care planning
Lead sponsor: Hong Kong Metropolitan University
Sponsor class: OTHER
Collaborators: name: Chinese University of Hong Kong
name: Food and Health Bureau, Hong Kong
First posted: 2020-07-29
Enrollment: 100
Sex: ALL
Minimum age (years): 55
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Allocation: NA
Intervention model: SINGLE_GROUP
Intervention model description: Dyads of participants recruited from all elderly community centres will receive the ACP intervention
Primary purpose: HEALTH_SERVICES_RESEARCH

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.

Eligibility criteria: 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.

Primary outcomes:
measure: Change in advance care planning engagement
timeFrame: Baseline, immediately after the intervention, 1 month follow up
Secondary outcomes:
measure: Change in dyadic concordance of end-of-life care preferences
timeFrame: Baseline, immediately after the intervention, 1 month follow up
Other outcomes:
measure: Depression
timeFrame: Baseline, immediately after the intervention, 1 month follow up
measure: Caregivers' stress
timeFrame: Baseline, immediately after the intervention, 1 month follow up
Locations:
city: Kowloon
country: Hong Kong
facility: HKSKH Lok Man Alice Kwok Integrated Service Centre
city: Kowloon
country: Hong Kong
facility: Hong Kong Christian Service
city: Kowloon
country: Hong Kong
facility: Yang Memorial Methodist Social Service Choi Hung Community Centre for Senior Citizens
city: Sha Tin
country: Hong Kong
facility: Jockey Club Centre for Positive Ageing
city: Sha Tin
country: Hong Kong
facility: The Neighbourhood Advice- Action Council Ma On Shan Neighbourhood Elderly Centre
city: Sham Shui Po
country: Hong Kong
facility: The Neighbourhood Advice-Action Council Sham Shui Po District Elderly Community Centre
city: Tuen Mun
country: Hong Kong
facility: The Neighbourhood Advice-Action Council Tuen Mun District Integrated Services Centre for the Elderly
city: Tuen Mun
country: Hong Kong
facility: Yau On Lutheran Centre for the Elderly
city: Wong Tai Sin
country: Hong Kong
facility: HKSKH Chuk Yuen Canon Martin District Elderly Community Centre
city: Wong Tai Sin
country: Hong Kong
facility: Pentecostal Church of Hong Kong Ltd.Choi Wan Neighbourhood Elderly Centre
Study officials:
affiliation: Chinese University of Hong Kong
name: Chi Yan Cheryl Yeung, MN
role: PRINCIPAL_INVESTIGATOR
References: