An Advance Care Planning Programme for Persons With Early Stage Dementia or Mild Cognitive Impairment in the Community
Study Details
Study Description
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.
| Condition or Disease | Intervention/Treatment | Phase |
|---|---|---|
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N/A |
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 Design
Arms and Interventions
| Arm | Intervention/Treatment |
|---|---|
| Experimental: ACP programme 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"
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.
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Outcome Measures
Primary Outcome Measures
- 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
- 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 on two hypothetical scenarios, one featured the prospect of developing into advance stage of dementia, and another scenario featured the prospect of developing into an irreversible vegetative stage. PWEDs or persons with MCI are asked to consider themselves in each scenario and indicate their preference for receiving three discrete life-sustaining medical treatments (cardio-pulmonary resuscitation, mechanical ventilation and tube feeding) in each of the two scenarios using a 3 point Likert Scale (want to attempt, refuse or not sure). The dyadic congruence is determined based on whether both of them choose the same option for end-of-life treatments and care goals for the two scenarios.
Other Outcome Measures
- Depression [Baseline, immediately after the intervention, 1 month follow up]
The level of depression of PWEDs or persons with MCI is measured by the 19-item Cornell Scale for Depression in Dementia (CSDD). It is to evaluate any adverse outcome posed by the intervention on them.
- Caregivers' stress [Baseline, immediately after the intervention, 1 month follow up]
Caregivers' stress is measured by the 12-item Zarit Caregiver Burden Interview. It is to evaluate any adverse outcome posed by the intervention on family caregivers.
Eligibility Criteria
Criteria
Inclusion Criteria:
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aged 55 years or over;
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being Chinese,
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being a Cantonese speaker,
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having a formal diagnosis of early-stage dementia or mild cognitive impairment; or having a Global Deterioration Scale score 3-4,
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having a designated family caregiver in direct contact.
Exclusion Criteria:
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non-communicable,
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mentally incompetent,
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received an ACP intervention,
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have previously signed an advance directive,
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have other life-limiting chronic illnesses.
Contacts and Locations
Locations
| Site | City | State | Country | Postal Code | |
|---|---|---|---|---|---|
| 1 | HKSKH Lok Man Alice Kwok Integrated Service Centre | Kowloon | Hong Kong | ||
| 2 | Hong Kong Christian Service | Kowloon | Hong Kong | ||
| 3 | Yang Memorial Methodist Social Service Choi Hung Community Centre for Senior Citizens | Kowloon | Hong Kong | ||
| 4 | Jockey Club Centre for Positive Ageing | Sha Tin | Hong Kong | ||
| 5 | The Neighbourhood Advice- Action Council Ma On Shan Neighbourhood Elderly Centre | Sha Tin | Hong Kong | ||
| 6 | The Neighbourhood Advice-Action Council Sham Shui Po District Elderly Community Centre | Sham Shui Po | Hong Kong | ||
| 7 | The Neighbourhood Advice-Action Council Tuen Mun District Integrated Services Centre for the Elderly | Tuen Mun | Hong Kong | ||
| 8 | Yau On Lutheran Centre for the Elderly | Tuen Mun | Hong Kong | ||
| 9 | HKSKH Chuk Yuen Canon Martin District Elderly Community Centre | Wong Tai Sin | Hong Kong | ||
| 10 | Pentecostal Church of Hong Kong Ltd.Choi Wan Neighbourhood Elderly Centre | Wong Tai Sin | Hong Kong |
Sponsors and Collaborators
- Hong Kong Metropolitan University
- Chinese University of Hong Kong
- Food and Health Bureau, Hong Kong
Investigators
- Principal Investigator: Chi Yan Cheryl Yeung, MN, Chinese University of Hong Kong
Study Documents (Full-Text)
None provided.More Information
Publications
None provided.- HMRF 03180198