CARER-CENTERED RESPONSIVE SUPPORT – NEW ECOLOGY




Hong Kong is a rapidly ageing society with growing demand for elderly support services but a shrinking labour force to provide them. By 2024, more than 21% of the population will be aged over 65 and by 2034 it will rise to more than 28%. The burden of care increasingly is falling on family members. Already, more than 220,000 people look after disabled or chronically ill relatives, of which more than 60,000 are aged over 70.


Even through caregivers were found to experience positive aspect of caregiving, a significant proportion of caregivers are “invisible” patients themselves because they are at higher risk of physical and mental health problems than non-caregivers and they face enormous emotional, financial and other stresses associated with caregiving.


To bring their situation to light, Dr Vivian Lou Wei-qun, Associate Professor in HKU’s Department of Social Work and Social Administration and Director of the Sau Po Centre on Ageing (COA), has done ground-breaking work that profiles caregivers in the community and their needs. She has also partnered with community-based groups to train more than 1,100 workers and volunteers and develop new tools to support caregivers, and successfully advocated for a new commitment by government to collect census data on family caregivers.



Lifting the Veil on Hong Kong's Community Caregivers


The first step to helping caregivers is to understand their situation. Dr Lou has been studying this group since 2009, when she developed a model on the needs of family caregivers based on examples from Shanghai and Hong Kong. That work resulted in more than 20 research publications. More recently, she has focused on producing a more fine-grained understanding of different groups of caregivers in the community.


In 2018, Dr Lou collaborated with the Hong Kong Council for Social Services (HKCSS) to conduct the first profile study of caregivers in Hong Kong, involving about 1,600 caregivers recruited from companies and District Elderly Community Centres and Neighbourhood Elderly Centre. This revealed a high sense of burden, depressive symptoms and poor family functioning among a substantial share of the respondents – 44% of those from companies and 25% of those from the community. The study recommended the government include family caregiving in its regular census exercises (which was achieved in 2021), train social workers to serve caregivers, review its financial support for caregivers, and take urgent action to increase public awareness about caregivers’ needs.


Dr Lou is now pursuing more targeted studies on male caregivers, who are increasing in number with dual-earning families, and elderly couples, who are growing frail together and helping each other with daily life. She is also developing a model on the positive aspects of caregiving for caregivers of dementia patients (this was inspired by workshops for caregiver leaders that she led in 2020 with Big Silver Community, a start-up network for cross-sector collaboration on programmes for the elderly).


Apart from these profile studies, Dr Lou has also done important work on the economic impacts of family caregiving on individuals and society. At the individual level, a 2017 study found 40% of caregivers dipped into their savings to provide care for their charges, about one-third gave up daily necessities, nearly one-third took paid leave of absences to look after their charges and about one-quarter reduced the number of hours they worked. In terms of societal impacts, studies in 2019 and 2020 with HSBC Life and The Woman’s Foundation projected that the direct and indirect costs of caregiving, such as reduced labour force participation by unpaid caregivers, would triple from about HK$38.8 billion in 2018 to HK$126 billion by 2040.



Empower Professionals and Volunteers to Provide Quality Support to Caregivers


Armed with that knowledge, Dr Lou has been working on ways to help caregivers. She developed a two-step tool to assess caregivers on the ground. In the first step, professional service providers do a risk assessment to see if caregivers face any crises, such as self-harming or hurting their care recipient, or are experiencing pain, financial difficulty or little interest or pleasure in life. If none of these are detected, the caregivers are invited to complete the second step – a multidimensional assessment – to determine their bio-psycho-social needs.


More than 500 service professionals have received training in using the two-step model, which has also been adopted by the Jockey Club “Stand-by U” caregivers community support project, for which Dr Lou is a research partner, and the Christian Family Service Centre, which uses it in its emergency carer support services. Together, these organisations have conducted more than 300 assessments using the tool (as of mid-2021) and plan to complete a total of at least 3,000 such assessments over the next three years.


Dr Lou has also developed a training programme for caregiver support that attracted more than 600 participants from 74 organisations from November 2018 to July 2019. Both foundation and certificate courses were offered, and the participants demonstrated enhanced capacity in serving caregivers and greater willingness to apply screening and assessment tools and burden-reducing strategies such as Happy Times Cards (see next section). The programme also provided materials that can be used in future, including standardised training materials, a case bank and intervention aids.



Evidence-informed Responsive Solutions to Support Caregivers


Apart from training service providers, Dr Lou and her team have also developed programmes to help caregivers directly.


The WeRise app aims to help patients and families cope with the profound and sudden impact of strokes. Each year, about 22,000 stroke survivors are discharged to home or institutional care in Hong Kong. The app provides information on disease management, stroke literacy enhancement, resources for patients and families, and it is being promoted by more than 15 hospitals, clinics and NGOs. It recently won a Gold Award for Social & Community Engagement in the 2021 Smart Ageing Awards. The app is part of the larger WeRise Stroke Family Empowerment Project under the COA, which also provides trains both senior social workers and young-old volunteers, in partnership with five hospitals and three NGOS, to support patients and families.


Another initiative for caregivers is the “Happy Times Cards”, which Dr Lou has developed with input from a design company. Each card depicts a leisure activity, such as indoor or outdoor sports, entertainment, social encounters, or hobbies or interests. Users select a card and reflect on the pleasure associated with the depicted activity. The cards are suitable for individual caregivers, social workers and icebreaking games, and as a tool for family and peer communication. More than 170 cards have been developed in three languages and distributed to more than 100 organisations and individuals in Hong Kong, Macau, Canada and Mainland China. An animated series is now in production.


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