Caring for Persons With Dementia and Their Caregivers in the Community: Towards a Sustainable Community Based Dementia Care System
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Dementia
- Sponsor
- Duke-NUS Graduate Medical School
- Enrollment
- 300
- Locations
- 1
- Primary Endpoint
- Change from baseline in health-related quality of life at week 24.
- Last Updated
- 5 years ago
Overview
Brief Summary
The study consists of two phases - i) a comprehensive assessment of biopsychosocial needs among cognitively impaired persons and their family caregivers residing in the Whampoa residential estate in Singapore ; ii) a quasi-experimental evaluation of a pilot community-based dementia care programme administered by a multidisciplinary team of service providers. The intervention is a physician-enhanced dementia-specific care management programme that supports client dyads for up to six months and through community care management, person-centred communication, management of challenging behaviours, psychoeducation, geriatric medicine, and gerontological approaches. The intervention team consists of a nurse, social worker, care manager, physician, and 'Dementia Care Program Assistants' who specifically design personalised meaningful activities to engage persons living with dementia as well as provide caregivers with training in basic dementia caregiving.
Detailed Description
To provide appropriate care for persons living with dementia (PLWDs) in the community, their needs (met, unmet, and latent) and that of their caregivers must be understood holistically. Local studies have yet to comprehensively examine the experiences of community dwelling older persons living with moderate to severe dementia and their caregivers, and the impact of an integrated community model of health care and psychosocial support. This study adopts a mixed-method approach to needs assessment and programme evaluation using qualitative in-depth interviews and quantitative surveys administered to participants assigned to control and intervention groups. The Hua-Mei Dementia Care System (HMDCS) is a programme that aims to empower and support both PLWDs and their caregivers through personalised care management, dementia-specific education, and cognitive training. The HMDCS addresses the multifaceted challenges faced by PLWD-caregiver dyads such as behavioural problems, psychological distress, lack of social participation, stigma, communication barriers, financial strain, and insufficient social support. The study aims are to: 1. Explore the perceptions, behaviours, and underlying motivators and inhibitors of PLWDs, their caregivers, and members of the community 2. Assess the health, social, psychological, and emotional needs of community dwelling PLWDs and their caregivers 3. Evaluate the effectiveness of the programme in reducing cognitive and functional decline, caregiver burden, as well as improving self-reported health status, social wellbeing, and quality of life of PLWD-caregiver dyads
Investigators
Angelique Chan
Executive Director
Duke-NUS Graduate Medical School
Eligibility Criteria
Inclusion Criteria
- •60 years of age and above.
- •Singapore citizens or permanent residents.
- •Lives within catchment area of Whampoa Constituency
- •Screened positively for cognitive impairment (MMSE score of 15 and above)
- •PLWDs must have a primary caregiver.
- •Caregivers must be 21 years of age and above.
Exclusion Criteria
- •PLWDs without a caregiver
Outcomes
Primary Outcomes
Change from baseline in health-related quality of life at week 24.
Time Frame: Baseline, Week 24
Euro-Qol-5D- EQ5D is a commonly used 5-item scale to measure health-related quality of life.
Change from baseline in cognitive impairment at week 24.
Time Frame: Baseline, Week 24
Mini-Mental State Examination is a 30-point test to screen for cognitive impairment. Scores ranging from 20 to 26 indicate some cognitive impairment, 10-19 indicate moderate to severe cognitive impairment and below 10 indicate very severe cognitive impairment.
Change from baseline in caregiver stress and burden at week 24.
Time Frame: Baseline, Week 24
Zarit Burden Interview is a 22-item instrument for measuring the caregiver's perceived burden of providing care. Questions focus on caregiver's health, psychological well-being, finances, social life and relationship between the caregiver and the PLWD.
Change from baseline in memory and behaviour problems at week 24.
Time Frame: Baseline, Week 24
Revised Memory and Behavior Problems Checklist is a 24-item (scored on a scale of 0-4) caregiver-report to measure behavioral problems in PLWDs. The items can be summed as a total score and 3 subscale scores in the domains of memory, depression, and disruptive behaviors. Parallel scores for caregiver reaction are also obtained. Such disruptive and challenging behaviors undermine quality of life in PWDs and place both an emotional and financial burden on their caregivers.
Secondary Outcomes
- Cost-effectiveness of intervention(Baseline, Week 24)