Research to inspire new ideas and promote the sustainable development of dementia care
JCCPA is at the forefront of promoting advanced development for dementia care. We believe that resources and research must be applied to understand the effectiveness of different care solutions and to support a sustained improvement in services in step with the needs of those with dementia. JCCPA’s research team applies its rich experience to conduct studies on dementia, with professionalism and focus, to achieve the goal of discovering innovative care models that can be implemented across industry based on forward-looking research results.
Since 2005, JCCPA has completed more than 30 surveys and research studies, exploring diverse topics such as: public misconceptions about dementia; relieving stress for dementia services’ frontline workers; the benefits of minimal constraints on people with dementia; how to avoid dementia patients living in the community getting lost; the efficacy of day care services for people with dementia; the efficacy of cognitive training, psychological education support by phone, acupuncture and others. The research findings supported the argument for promoting quality care services for people with dementia and shaped the future direction of service development.
iSupport for Dementia (iSupport) is an online education and skill training programme for informal carers developed by the World Health Organization (WHO). It includes five learning modules: (1) general information about dementia; (2) information related to being a carer; (3) self-care; (4) providing care for the person with dementia; and (5) addressing symptoms of dementia. JCCPA will collaborate with Flinders University, College of Nursing & Health Sciences to conduct a study in Hong Kong with an aim to (1) investigate the opinions of family carers and care workers about the ease of access the iSupport, user-friendly level and potential problems when they use the iSupport, and (2) investigate the effects of iSupport for family carers. In Phase 1 of the study, we will conduct online focus groups to find out the views of family carers and care workers on the revision and implementation of the generic web-based Chinese iSupport for Dementia program. In Phase 2 of the study, we will conduct a randomized controlled trial to find out whether the iSupport for Dementia program has positive effects on health and wellbeing for family carers and for those they care for.
In Hong Kong, the prevalence of restraints in long-term care institutions is high compared to other places. Restraint is usually a preferred option of staff to control residents, and people with dementia are more likely to be restrained than other residents. Studies have identified a range of negative physiological and psychological outcomes associated with the use of restraint, including strangulation, fall, anger, and feeling of humiliation. JCCPA attempts to establish a protocol to promote restraint reduction in local settings by introducing a multi-disciplinary restraint reduction programme in two residential care homes. Before and after the restraint reduction programme, staff would self-complete questionnaires about their usage, knowledge, and attitude on restraint, and their competency in dementia care. In addition, the changes in physical restraint and fall of the elder service users throughout the programme will be recorded to examine how the programme would help on reducing physical restraint.
To facilitate the service provision of staff of the elderly settings to people with dementia, JCCPA initiates an outreach training offered by our training consultant to the staff in dementia and elderly units. The training includes the knowledge and caring techniques on dementia in the actual working context, workplace environmental design assessment and suggestion, etc. The outcome measures for the evaluation of the staff training include knowledge on dementia, attitude and feeling on dementia and dementia care, dementia care competence, and satisfaction on programme. The staff attending the training would self-complete the assessment at two time-points: before they attend the training, and when they complete the training. In addition, the center in-charges would be invited to provide their views on how the training brings changes to the dementia care service provision of their units, and their satisfaction on the programme.
Funded by The Hong Kong Club Charities Trust, JCCPA launches a variety of training and support to both the family caregivers and to local citizens on helping people with dementia in neighbourhood, and city-wide public education to facilitate the general public to understand more about dementia and how everyone in the community can do to help people with dementia in daily lives. The evaluation of this community project will focus on the change of behavior, attitude, condition, and knowledge of the participants after attending our training and programmes, and their satisfaction towards this project.
Services of day care centers for the elderly have been suspended from late January 2020 due to the outbreak of COVID-19. JCCPA initiates a study to investigate how the suspension of day care service influences the users with dementia and their family caregivers. People with dementia of two day care centers, JCCPA and Jockey Club CADENZA Hub, who have taken leave during the COVID-19 pandemic and their family caregivers are recruited to participate in this research. The cognition, psychological well-being and physical mobility of users, and the caregiving burden of carers will be collected in three time points: Latest assessment record before service suspension, when users resume the service, and three months after the resumption.
Family caregivers of people with dementia may encounter multiple crises during their caregiving, e.g., caregivers do not know how to effectively handle the symptoms of dementia, or decide whether their relative need to go to a nursing home, these crises cause both physical and emotional stress to caregivers. As such, JCCPA has implemented a consultation service provided by a healthcare professional to assist family caregivers of people with dementia in their caregiving.
The evaluation study of this intervention showed that caregivers reported emotional stress from the uncertainty of the diagnosis and progression of dementia as well as from the deteriorating health of care recipients. Notably, many caregivers did not have community support. To address caregivers’ concerns, the healthcare professional offered information about dementia and future care planning, and practical and customised solutions to caregiving difficulties.
Caregivers were satisfied with the consultation service. The service facilitated caregivers to arrange a diagnostic consultation for the care recipients and led caregivers to feel more motivated and knowledgeable to seek community support after the consultation.
Our findings revealed that care recipients and caregivers were satisfied with the programme. Care recipients’ social engagement, self-esteem, and sense of competency increased when they independently completed the games. Caregivers reported improvement in care recipients’ physical and cognitive functioning and emotional wellbeing, and that the programme offered respite and reduced caregiving burden. Staff viewed the programme favourably as the programme strengthened staff’s dementia caregiving skills.
Overall, this service model was feasible, acceptable, and effective to provide quality dementia care to people with dementia, respite to family caregivers, and professional development to staff. We suggest that (1) NGOs should regularise this intervention and (2) family caregivers should encourage their family members with dementia to participate in this programme.
Dementia Research In-focus