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 in dementia and had no training on caregiving before using the Cadenza Hub service. They 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.
‘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. My brother’s wife was in Mainland China, she didn’t come to Hong Kong to help. I had to take care of everything by myself, for both of them.…. Luckily, I have some good neighbours to help me out during difficult times. My relatives and friends do not live nearby, it is hard to ask them to come and help without a strong reason. Fortunately, here (Cadenza Hub) had a dementia assessment for my mum to do to find out what causes her abnormal behaviour, then I realised it is because of dementia.’ (Case 3, female, 53)
I was devastated at that time, after my mother being 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, we placed her in the living room to look after her more easily… Being a caretaker is tied up with responsibilities, I need to make priorities…our main focus is to take care of her, no other things can go above this priority. 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. I can still hang out with friends no matter when and where I am, not reduce to none, but still… it has reduced a lot. (Case 8, female, 62)
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 care services, caregivers tend to prefer community care services and put residential care homes as their last resort due to the less desirable environment.
Because my brother is living in aged care, I am more alert to the problems of the aged care services. I would feel heartbroken if I send my mother to stay at aged care. I would rather be hard on myself to take care of my mother than sending her to aged care. At that time, my mother was able to walk, or using a wheelchair… I didn’t want to send her there… But I still put in an aged care application for her, it usually takes three to five years for a spot… I didn’t want her to stay at aged care at all unless her health and functions decline significantly. I like to keep her out of aged care because she can do exercise in the daytime, where she can practice preventing memory loss. At aged care, the care workers don’t care about the resident’s activity level, they let the residents sleep all day, some residents pass away in a few months or not longer than a year. So, that’s the reason why I prefer my mother to come here (Cadenza Hub) than staying at the aged care, so she can practice how to take care of herself. (Case 3, female, 53)
Moreover, participants generally agreed that the environment as well as the services in the Cadenza Hub were much better than those of residential care homes.
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)
There is no doubt that this day care centre is always our first choice. Although we are still queuing for the residential care homes for older adults as a backup plan when we can no longer take care of my sister, sending her to residential care homes is our last resort. (Case 9, male, 62)
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)
Moreover, the Cadenza Hub provided social activities and training sessions to the users that could not be arranged by foreign domestic helpers. The professional services, such as physical muscle training and aroma massage therapy, available in the Cadenza Hub received positive feedback from many users.
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. The therapist has done a very good job. My mum is happy to see her legs without oedema (Case 4, female, 64)
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 felt hopeless when they knew their parents or relatives suffered from dementia, but the improvement of users gave them hope again. The training at least slowed down the deteriorating process of the older adults.
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. So, I believe the care provided at the centre is effective and helpful to him… 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. There are some tips about it, which is to ask her to lean forward when getting up, it would be easier for her to hold on to the table without using much effort. 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 located near my home, we live upstairs. It provides cognitive training which I don’t know how to train her myself. And the centre holds a variety of activities for her to learn and work on, which may help to maintain her condition and delay the degeneration. 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 does not only enhance the well-being of the older adults, but also benefit 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.
(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. She goes to Cadenza Hub 20 days per month. It is absolutely helpful, it must be helpful by all means. (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 I have difficulties I can’t solve, the staff here would give me practical advice. 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. Also, they would let me know when my mother doesn’t eat well and give me suggestions. I am impressed with the details of caring at the centre. The staff are always welcome for questions. (Case 3, female, 53)
Theme 4: Financial support to ensure equitable access to community care
As most existing community care services are privately funded with substantial out-of-pocket payment, many caregivers expressed that they would not have been able to afford the day care service in the absence of the financial support by 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 receiving the CSSA 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 voucher, 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. It is my thoughts only, maybe others can afford it, but not me.’ (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 about $400 HKD per day. Would a normal family pay $400 HKD per day to take care of the elderly?’ (Case 13, female, 62)
Theme 5: The role of NGO and social worker in bridging the information gap
Social workers and NGO played an important role in bridging the gap between the clients in need and the existing community service. Many caregivers had no ideas about community care services before getting in touch with social workers. The advertisements of community services may not reach the cases in need. Most of the service users applied for the service mainly by referral of social workers or workers in community centres.
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)
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. But I need to put in the efforts to attend the day care centre (Cadenza Hub) to find out the information and ask for assistance. At the end of the day, I still need to do part of the work to make it happen. In my opinion, the social worker isn’t a one-off solution, you cannot expect things to be done by others or the staff only, you will need to work with them as well. (Case 9, male, 62)