Background of participants
Among the 14 participants, all of them are caregivers of the Cadenza Hub users diagnosed with mild, moderate, or severe levels of dementia. Nine of them were female and five were male. The duration of day care service use of their care recipients ranged from 2 months to more than 6 years. All of them used CCSV with varying co-payment levels ranging from level I to level IV. For further background information of the participants please refer to Table 1.
Key findings
Five key themes emerged in this study. The first two themes were about the difficulties and struggles faced by the caregivers and service users under the current community care system in Hong Kong, which included (i) Tremendous caregiving burden in the absence of community care support and (ii) Struggle in choosing care services. The next two themes focused on how the Cadenza Hub service and its service delivery model could work synergistically to mitigate the existing social inequalities in community care needs under the CCSV scheme, which included (iii) Benefits of the day care service and (iv) Financial support to ensure equitable access to community care. Finally, the last theme illustrated how efforts in the community sector could enhance health equity by matching appropriate community care services to those in need, i.e., (v) The role of NGO and social worker in bridging the information gap. Details of the five themes are elaborated as follows:
Theme 1: tremendous caregiving burden in the absence of community care support
Taking care of older adults with dementia was a huge challenge for caregivers. Many caregivers expressed their sorrow and frustration during the interviews, as they did not have any professional knowledge of dementia and had no training on caregiving before using the Cadenza Hub service. With limited experience, caregivers felt devastated, including those whose care recipients were still at the early stage of dementia but not eligible for public service referral due to the absence of official diagnosis of dementia.
‘When I started to be a caregiver, I was incompetent, I didn’t know how to care for my mother. I felt devastated. One time, my mum was at the hospital and my brother got a stroke. My brother had gone crazy, both of them. I was so helpless at that time … No one can help me out. I had to take care of everything by myself, for both of them… My relatives and friends do not live nearby, so it is hard to ask them to come and help without a strong reason. Fortunately, here (Cadenza Hub) offered a dementia assessment for my mum and found the causes of her abnormal behaviour, then I realised it is because of dementia.’ (Case 3, female, 53)
I was devastated at that time (after my mother was discharged from the hospital). I had no idea what to do when we were home. She could not take care of herself. We didn’t let her sleep in her room, as it is easier to look after her when we placed her in the living room … The only thing we can do now is to take care of her, not any other things. For example, I rarely hang out with my friends, luckily my friends are considerate and willing to accommodate my needs when scheduling the time to meet. (Case 8, female, 62)
Many of the informants were at a loss when taking up the caregiving role all of a sudden, and needed to put a lot of time and effort on caregiving by giving up their own social life. They were worried about the family members with dementia days and nights, given the deterioration of ability to self-care. Without the community care service, the caring burden would have been even heavier and have more seriously disrupted their daily lives. Community care services providers, such as the Cadenza Hub, provided dementia assessments and supporting services to help them out considerately. With the support, they gained a better understanding on the behavioural and psychological symptoms of their family member with dementia, and had a clearer idea and expectation on their caregiving role.
Theme 2: struggle in choosing care services
Choosing appropriate care services for older adults was a common challenge for all caregivers. While possible options include applying for residential care homes, employing foreign domestic helpers, visiting community centres, or using community day care services, caregivers tend to prefer community day care services despite a greater caregiving role, and put residential care homes as their last resort due to the less desirable environment.
The caregivers wish their family members with dementia could join professional training to maintain physical health and prevent memory loss. However, they tended to believe that most aged care homes in Hong Kong do not have the capability to carry out professional training for the aged residents.
Because my brother is living in the aged care, I always witness the problems of the aged care services. I would rather take up more by myself but to avoid sending my mother to the aged care. At that time, my mother was still able to walk, or using a wheelchair… I wish to keep her out of the aged care, so that she can (be free to) do exercise in the daytime. I mean she can stay here and receive training to prevent memory loss. At the aged care, the care workers don’t care about it at all. They just let the residents sleep all day. So, that’s the reason why I prefer my mother staying here (Cadenza Hub) to living at the aged care, so she can practice how to take care of herself. (Case 3, female, 53)
Also, participants generally agreed that the environment as well as the services in the Cadenza Hub were much better than those of residential care homes and could not be made possible by simply hiring a foreign domestic helper. The centre provides cognitive and muscle training, therapeutic services, and social activities for the older adults with dementia during day time, and the members can return home in the evening. The service users only need to get used to the schedule at the centre and remain the rest of the living routine at home.
I had visited a lot of elderly centres, including service centres. The Cadenza Hub is really clean, tidy, and new. I think the Cadenza Hub belongs to a first-class facility, probably. It is unbeatable. Whenever you go to other centres, you will find a great difference. (Case 1, male, 57)
Considering the current situation, I prefer the day care centre. It is because my husband and I can still take care of my mother. The day care service is a better choice for older adults as they are more familiar with the environment at home. Just like children would be reluctant to go and adapt to a new environment. (Case 14, female, 57)
My mum loves to come here (Cadenza Hub) because she didn’t get to go to school when she was young. So, she is so glad to join the social activities here. Normally, she doesn’t like to do exercise. After coming to the hub, she keeps doing exercise regularly. She became more energetic and healthier than before, and developed a regular lifestyle. Now, her condition is very well, I noticed that the oedema on her legs has improved after doing the aroma massage therapy. (Case 4, female, 64)
Overall, caregivers initially struggled in choosing among various types of care services. Nevertheless, most of them preferred community day care services rather than elderly homes where the living environment and services were not satisfactory. They were seeking services which are helpful to their family members with dementia to maintain both physical and mental health. Moreover, the professional training and diverse services in the Cadenza Hub cannot be replaced by the aid of domestic helpers, suggesting the niche of the community day care service in the Hub.
Theme 3: benefits of the day care service
The significant improvement of physical ability and mental health of service users explained why they prefer to stay in the Cadenza Hub. Most of the caregivers initially felt hopeless when they knew their parents or relatives suffered from dementia, but the improvement of service users in the Hub gave them hope again. As the informants reflected, their family members showed significant improvements in social skills, self-care abilities, and emotional control.
He has made a lot of improvements over this year. In the beginning, he had no contact with others. No eye contact, nothing. He won’t care about anything when he got into the lift. Then he got better, he has started to say hi to people and took the initiative to greet people. And now, he even chats with others. The centre (Cadenza Hub) has made a lot of positive changes in his personality… The centre has changed him a lot by showing a great improvement in changing clothes and cleanliness. His social skill is getting better and this emotion is also well stable, less likely to lose his temper. (Case 1, male, 57)
(What do you find helpful in the one-on-one exercise class?) We have learnt a set of skills, such as when she gets up to sit on a wheelchair… she has to hold on to the table to get up, then sits on the wheelchair behind her. We didn’t know all this before taking the class. (Case 8, female, 62)
The day care centre helps a lot. We have pushed back the date of admitting to the elderly home. The Cadenza Hub is near my home, we live upstairs. It provides cognitive training which I don’t know how to train her myself. The services provided at the centre are more professional than what family can do, it should be helpful… (Case 12, male, 74)
The service provided by Cadenza Hub not only enhanced the well-being and promotes healthy ageing of the older adults, but also benefited the caregivers. As most caregivers bear huge pressure in taking care of their parents or relatives, the day care service gave them appropriate support and free time for their own commitment. Most informants agreed that day care service allowed caregivers to have more leisure time, enjoy their social life with friends and families, and work for a living. They felt disburdened with the support from the Cadenza Hub.
(Does the service provided by Cadenza Hub help in reducing your stress?) Yes, of course. Cadenza Hub takes care of her for a few hours, she can do some exercise, chatting with others… It would be nice to always be with her, but I have to work and sustain a living. There is a benefit to go to work, which I don’t need to stick with her all day long. I don’t think being with her is something I can’t accept. I’d like to stay with her, but I have to go to work. It is absolutely helpful. (Case 2, male, 60)
(Any changes after you joined the Cadenza Hub day care centre?) There is more time for me to relax. I can go out for my activities, or to relax for a few hours. And here (Cadenza Hub) has taught me a lot. For example, when my mother is unable to take a shower on her own, the staff would teach me how to hold my mother at the shower… with opening wounds, the staff would take a look at it and teach me how to manage it. I am impressed with the details of caring at the centre. The staff are always welcome for questions. (Case 3, female, 53)
Most of the caregivers appreciated the services delivered by the community care centre, especially those who need to work in the day time. The community day care service and the responsible staff in the Cadenza Hub not only allowed the caregivers to work and enjoy social life without much worry, but also offered both psychological and social support by equipping them with better caregiving skills to facilitate dementia care at home and coping skills to manage their own well-being when feeling overwhelmed.
Theme 4: financial support to ensure equitable access to community care
Most existing community care services are private and self-financed by nature with substantial out-of-pocket payment. Taking the Cadenza Hub as an example, the regular fee is up to $400–500 Hong Kong dollar (equivalent to around US$50–65) per day. Therefore, many caregivers, especially the socioeconomically disadvantaged, expressed that they would not have been able to afford the day care service in the absence of the government financial support via CCSV.
‘There is no doubt that the social service vouchers (CCSV) have helped me a lot. It is better to receive financial aid from the government. If not, we won't be able to join the Cadenza Hub or the day care centre. How can someone not receiving the CCSV join the Cadenza Hub? It is affordable when it is subsidized with the service vouchers… We need to pay 5% of the fee only, around $300 HKD per month… Without the vouchers, it would be $500 HKD per day. If paying the total fee out of my pocket, I won’t be willing to spend that much, unless I am wealthy.’ (Case 12, male, 74)
‘We got the service vouchers (CCSV) unexpectedly, which can save some money for her to join the aroma massage therapy and one-on-one exercise in Cadenza Hub. Since my mum’s health condition has improved, less money is being spent on other medical care.’ (Case 4, female, 64)
‘The service voucher (CCSV) helps a lot financially, it makes a big difference, the regular fee is more than ten-thousand dollars!… If I pay the regular price, I have to pay more than ten-thousand dollars a month, which is really expensive. Without the voucher, I will never join the Cadenza Hub. It is more than $400 HKD per day.’ (Case 13, female, 62)
Quality community care service may not necessarily be affordable to the families in need. Many caregivers struggled in the trade-off between the cost and quality of service. Also, certain professional training and therapeutic services may even require extra fees, deterring the low-income families from service use. With the financial support provided by the government, their choices in access to professional and quality services were significantly improved. Since the CCSV scheme provided graded subsidy based on the principle of proportionate universalism, families with lower income were eligible for a greater amount of subsidy; thereby promoting a more equitable access to services in the community.
Theme 5: the role of NGO and social worker in bridging the information gap
Social workers and NGOs played an important role in bridging the gap between the clients in need and the existing community services. Many caregivers had no ideas about community care services before getting in touch with social workers, whereas the advertisements of community services were often scattered and hence can hardly reach the cases in need. As the informants reflected, they have difficulty in mapping the existing services themselves, and agreed that social workers and NGOs are the most effective channel for linking their needs and community care services providers.
We have seen many advertisements at the estate about the community services for the elderly. However, you won’t know what it is if you never come close to check. The elderly won’t notice there are services for them. They also don’t get on to the internet. (Case 5, female, 45)
(How do you know about Cadenza Hub?) It is mainly recommended by the medical social worker. The social worker has introduced what sort of services are provided at the hub to me, which I find it suitable for my mother-in-law to join. Therefore, we have joined since then. (Case 6, female, 53)
In addition, social workers provided a channel for the caregivers to get access to information about the existing social welfare and administrative support on applying for the relevant schemes.
When I was applying the service vouchers for my sister, the medical social worker helped me out. She did the assessment of our case, and we are eligible to get it, then she brought the vouchers to us. This social worker has helped me a lot. (Case 9, male, 62)
Most of the service users applied for the service mainly via referral by social workers or field workers in the community centres. This theme highlights that, while the provision of community care services is crucial, it is also important to have social workers and NGOs to line up the families in need with the existing services and welfare schemes in order to facilitate a more equitable access to quality services in the community.