Respite Programme for Caregivers of People with Sundown Syndrome

Follow Laura, our writer from mosAIC, as she spends the night at St Joseph’s Home (SJH) to learn more about its respite programme for caregivers of persons with sundown syndrome.

Introduction
For most, the fading of day into night signals the end of activity and the start of rest. However, as most prepare for bed, others become wakeful. I arrive, near the end of the work day, at St Joseph’s Home (SJH) in Jurong West, armed with my camera and notebook. SJH is graciously hosting me for a night so I can experience their Dusk-to-Dawn programme – a respite programme for caregivers of persons with sundown syndrome.

What is Sundown Syndrome?
According to Gillian Beins, Director of Nursing, SJH, sundown syndrome refers to behaviours of increased agitation, restlessness, confusion and short attention span exhibited towards the later part of the afternoon and throughout the night. “The problem is, with persons with dementia, we often do not know their triggers and it becomes worse at night because it is darker, and the darkness disorientates them. They may become agitated because they cannot express what they want.”

These neuropsychiatric symptoms are stressful for caregivers. When sundowning individuals stay up all night, pacing up and down the corridor and going to the washroom repeatedly, they may inadvertently disturb their family members’ much needed sleep. Caregivers may also need to stay up to watch over their charges and ensure that they do not hurt themselves or disrupt others.

For these exhausted caregivers, frustration eventually builds up towards their loved ones who keep them awake night after night. Beyond exacerbating existing caregiver stress, this tension can also strain family relationships.

Sr Geraldine Tan, Executive Director of SJH, and May Wong, Head of Allied Health, started the Dusk-to-Dawn programme in 2012. Funded by the Lien Foundation and designed specifically for caregivers of persons with dementia who experience sundown syndrome, the programme allows caregivers to get a good night’s rest by housing their loved ones at SJH for the night.

Dusk
Gillian and her team take time to learn about their clients. By talking to them and their families, the knowledge gained allows the team to care for each client in a way that prevents agitation and restlessness symptomatic of sundowning. The team then facilitates clients to channel their energy in a productive and enjoyable way.

At 5pm, we prepare to pick up the clients for the night. We are joined by Rose, Healthcare Assistant (Pastoral) and driver Ricky to pick up Mdm Soh* in the East and Mdm Lin* in the West.

After our drive across the island, we are warmly received at the home where Mdm Soh and her husband are cared for by their daughter, son-in-law, three grandchildren and a helper. Mdm Soh is a lively woman who gets talking as soon we arrive. “How old are you?” She asks me in Cantonese. I reply and she asks again soon after. Thereafter, every few minutes, she greets and either asks for my name or my age, as if we were meeting for the first time. Rose soon engages Mdm Soh in regaling us with some old Cantonese songs, and I take the opportunity to speak to her daughter, Si Min*.

Si Min shares that her family has struggled to manage problems arising from Mdm Soh’s sleeplessness at night. Her anxious and obsessive behaviour throughout the night has led to frequent fights and strained the family’s interpersonal relationships in the day as well. “The Dusk to Dawn programme has been a great help to us in restoring some peace. Furthermore, the day after she is on the programme, her mood is better which makes it easier for those who take care of her.”  

Fortunately, Mdm Soh seems in a good mood, and amidst these high spirits, we board the bus. As we pull away from the house, I turn to watch the family wave us off with tired but relieved smiles.

At our second stop where Mdm Lin resides in Jurong, the send-off is less boisterous. Mdm Lin’s helper observes while Rose and Ricky activate the lift fitted on the back of the mini bus, allowing the wheelchair-bound Mdm Lin to board.

As we head back to SJH, Mdm Lin is silent, but Mdm Soh is exuberant – remarking on the cleanliness of the streets and Ricky’s smooth driving. It is past dinner time and neither lady looks tired.

At SJH, we escort both ladies to the room where the programme is primarily held. It is an L-shaped room with cheery yellow walls adorned with art pieces. The ladies are escorted to a dining table large enough to comfortably sit a group of six. Just behind the table are two bedrooms where they can retire when they are ready for some sleep.

A TV screen flashes to life above a stack of Teresa Teng DVDs and a deck of mahjong cards is produced. For Mdm Soh, who has been singing since we picked her up, Teresa Teng karaoke videos are her choice of entertainment. Mdm Lin, on the other hand, favours trading colourful mahjong cards with Nursing Aide, Lalbiak, arranging them this way and that before she decides to start a new round. Lalbiak confesses that she does not understand the game but is happy to play along.

With the programme supporting one to three clients per night, the SJH team is mindful of clients’ compatibilities in sharing the programme space. With Mdm Lin, who does not mind the music and singing, Mdm Soh can sing her heart out. But on Mdm Soh’s other programme nights, other clients who are not as tolerant of singing can opt to take calming walks in the lush garden just outside, or rest in a separate quiet room.

On my night there, Mdm Soh does not tire of karaoke from 8pm to 11pm. In that time, there is a constant playlist of different old Chinese songs and she sings through them with ease, eyes fixed on the lyrics at the bottom of the screen.

Night
Around 11pm, after countless rounds of kararoke, Mdm Soh asks to use the bathroom. This is an opportunity for staff to prepare clients for bed. One of the objectives of the programme is to encourage and realign a healthy sleep pattern for these seniors, so that they may also sleep better at night in their own homes. This requires sleep hygiene so Lalbiak and Zar Chi, Healthcare Assistant (Nursing), dim the lights and turn off the TV to ensure there is no noise.

Inside the bedrooms, the walls are painted a deep maroon, making the room look almost pitch black when the lights are off and the door is closed. This is all about creating a space conducive for sleep, and it is also personalised. If a client needs to hug a soft toy that gives them a sense of security, the family can always pack it along for the client. Or if some light soft music helps, SJH staff can also arrange this for the client.

Mdm Lin has slipped quietly into her bed by the time Mdm Soh is back. The latter follows suit. The doors are kept open to allow the staff to keep an eye on the clients, but they do not hover too close.

At 11pm, the night shift staff arrive to take over. Florence and Vasanthi, both Healthcare Assistants (Nursing) as well as Jackie, Dusk-to-Dawn Programme Coordinator, arrive and they huddle with Lalbiak and Zar Chi in discussion of the evening’s happenings as part of their handover.

For nearly 20 minutes after the ladies have gone to bed, the only sound in the programme room is the soft shuffling of papers as the night staff read through everything that the previous shift have noted. The intake/outtake charts list all the drinks and food ingested as well as the number of times the ladies have gone to the toilet and whether urine was passed.

Near 11.30pm, Mdm Soh cranes her head up, letting us know she is awake, “Missy, I want to go toilet”. Vasanthi goes in to check on her and find out if she wants to go to the bathroom or use the commode, a wheelchair-like seat that collects urine and poo. Mdm Soh chooses the commode and it is brought to her room. Vasanthi closes the door for privacy as she assists Mdm Soh. When she emerges from the room, Jackie helps to soothe Mdm Soh back to sleep while Vasanthi clears the commode.

At 10 to 15 minute intervals, sometimes stretching as long as half hour, Mdm Soh asks to use the loo. Mdm Lin, on the other hand, sleeps soundly, unaware of the interruptions from her programme mate.

At home, this sort of behaviour may keep family members up as doors are opened and closed and lights are turned on and off. Other noises such as the shuffling of feet along the corridor, rummaging through drawers, mumbling to oneself, or directly seeking company and conversation from family members are examples of ways that persons with sundown syndrome disrupt their family’s rest.

By 1am, after Mdm Soh has used the toilet multiple times, I am convinced she is not actually tired and therefore unable to sleep. I, on the other hand, am invited to rest whenever Vasanthi, Florence and Jackie see me stifle big yawns.

One issue with staffing overnight programmes is getting the manpower for “graveyard shift”. Compounded by clients often requiring one-on-one care, it is difficult to scale such services. This is why the current capacity of this programme is three clients nightly – with two staff to watch them.

After a few more yawns, and another invitation to rest, I admit defeat around 1.15am and retire to a nearby room.

Dawn
It is 5am when I awake, and after a quick wash up, I find Mdm Soh and Mdm Lin also in the process of getting out of bed. The team has not slept at all, but they spring readily to action. Florence cleans and changes the bed sheets while Vasanthi escorts Mdm Soh to the bathroom to wash up and have a change of clothes. With the bathroom occupied, Jackie takes Mdm Lin up on a game of cards.

When everyone is freshened up and ready for the day, we make our way to the canteen. It is now 6.45am and Florence loads trays for both clients and staff with porridge, buns, fried rice, coffee and Milo. At the table, we all tuck in. I watch other staff stream into the canteen to eat before they begin their shifts. The conversation flows and we pass the rest of breakfast this way until the mini bus arrives at 7.45am.

When the bus drives off at 8am to send the ladies back to their homes, I think of their families. In the conflicting demands of family, career and self-care, the burden of caregiving is heavy. I have seen for myself the sleeplessness and restless behaviour of sundowning individuals and wonder how many Singaporeans spend their nights this way.

Admirably, this service is here also because families do want to care for their loved ones with sundown syndrome for as long as they can in their own homes. To this end, the SJH’s team has my commendation for working tirelessly round the clock so caregivers gets the some much-needed rest and peace of mind – even if only in the hours from dusk to dawn.

Programme Eligibility and Cost
In order to be eligible for Dusk-to-Dawn respite programme, the client must be formally diagnosed by a doctor as having dementia and sleeping problems. Pre-interviews will be conducted prior to admission to the programme. The service costs $60 per night before GST and families can use the service up to three times a week. Contact the Dusk to Dawn team at dtd@stjh.org.sg or call 6268 0482.

*Names have been changed to protect identities of clients and family

● Create an environment conducive for sleep. Minimise noise and ensure that the lights are low or off. Relaxing music may put them at ease.
● Keep them active during the day. Find activities that engage them, go through old photos, reminisce. Allow them to talk.
● Medication – Seek your doctor’s input for prescriptions that may help them sleep.
● A warm drink like milk. Be mindful of and try to avoid drinks that are stimulants.
● Give sundowning persons something to hug for security

Note: Triggers and stressors are highly subjective, what works for one individual may not work for another.