Finding respite at night
The only programme in Singapore that offers a night care service for those with dementia in a nursing home setting, the programme provides activities to clients and respite for caregivers.
BY: Eleanor Yap
Ninety-six-year-old Alice (full name cannot be disclosed) was diagnosed with dementia about three years ago, with the possibility of having exhibited signs and symptoms two to three years prior. She would have occasional outbursts that were unprovoked, during which she would cry, kick or pinch others. Her sole caregivers – her son and a domestic helper would get frightened when this happened. On top of that, Alice would sleep very little and would be up and awake, a condition called “sundown” syndrome, which meant the helper had to stay awake to keep a watchful eye on her. As this carried on for a while, it took a toll on the helper as she not only had to care for Alice during the night, but also in the day.
Alice’s son felt this couldn’t continue and wanted to prevent the helper from burning out. He had read about a programme called Dusk to Dawn at St Joseph’s Home, a night service for those with dementia, and decided to get her enrolled earlier this year. Today, Alice attends the programme three times a week, allowing the helper to get sufficient sleep so she can continue to provide care duties to Alice in the day and night. While at the Centre, Alice not only chats with others in the programme but also plays with the robotic animals and loves to paint.
The programme at St Joseph’s Home was born in 2013 after its administrator came across families that had caregivers who were faced with their loved ones with dementia who stayed awake or was waking up frequently during the night forcing their caregivers to stay awake or have interrupted sleep. Said May Wong, the programme director of Dusk to Dawn, “This resulted in caregivers not being able to sleep well and sufficiently, becoming very frustrated and burnt out from lack of rest while providing constant caregiving day and night.”
These families had expressed a wish for a place where they could drop off their loved ones during the night. Meanwhile, May had also read about a programme in New York City where they offered a night service where those with dementia could participate in activities and interact with others.
Through funding from the Lien Foundation, the programme started and has been running every Monday to Friday night from 6pm to 8am (no service on public holidays) and is the only nursing home that provides this community programme on-site in Singapore. “The aims of the programme is to provide the client a safe and engaging environment during the night and to provide respite for the family caregivers so they can reclaim much needed sleep,” explained May.
St Joseph’s Home converted a space about 120 sqm on the ground floor of its nursing home into the Dusk to Dawn Centre. Separated from the nursing home section, the Centre’s air-conditioned space is divided into a living area and a sleeping/rest area. The living area is where most of the activities are carried out. May explained, “Clients and staff can engage for example in conversations, table-top games, physical activities, creative art, craftwork, music and singing, watching movies, surfing the Internet, etc. We have a small pantry section with a fridge and microwave to stock and prepare snacks during the night should clients require refreshments.
“Should clients feel tired and desire to sleep or rest, the sleep/rest area can accommodate up to five clients at the same time, with three beds and two leather recliners. If they are sleeping or resting, the staff is on duty to care for them should they wake for example for toileting and refreshment needs.” May explained that the Centre could care for up to eight clients a night and all care staff are trained in basic nursing, therapy and dementia skills.
Sundowning is a condition, which can happen in some people with dementia or up to 45 percent of people with dementia, explained May. It can occur in the late afternoon, evening or night and the person with dementia can experience mood swings, become suspicious, be disoriented to time and place, may experience difficulties going to sleep or have interrupted sleep.
She added: “When our clients attend the night care programme, our main objective is to provide companionship to our clients. Many times in our experience, the basis for some of their responses could be insecurity, the fear of being alone and their fear of an environment, which they cannot interpret with the dementia present. At the Centre, there’s always someone with them, to reassure them, to comfort and help them, and to keep them company.”
She said that activities add to a “meaningful engagement”. “This means that activities are client-driven. For instance, if a client likes to sing and loves music, then this can be the meaningful activity that takes place during the night. If the client enjoys conversation, then this is the activity. There is no timetable or formal structure such that at 9pm, it’s time for games, 10pm it’s time for drawing, 11pm it’s time for sleep, etc.”
With a growing ageing population, the Dusk to Dawn programme is timely and much-needed. “We hope to be able to grow this service so that we can care for at least double what we can do so now. This will be in our new residence back in Jurong which is about 150 sqm. We are currently based at Mandai in a holding site, while waiting for our new physical home to be built by 2017,” said May.
The programme had helped many already including Pearly Chia’s son and other caregivers. Before coming to the Centre, 88-year-old Pearly, who was diagnosed with dementia about 10 years ago, had a tendency during the day to persistently look for her son as she felt secure in his presence. At nights, she frequently had interrupted sleep and whenever awake, she would look for her son. She would call for him, walk to his room and bang on his door. Her calling and banging could be very loud, waking up her helpers and her son’s own family. Also, the two helpers found it difficult to balance their care duties during the day, as well as stay awake at night with Pearly. All this added great pressure to her son who was having trouble balancing his own life and his mother’s needs.
Pearly’s doctor recommended the family to the Dusk to Dawn programme and she has been with the programme since it started, every night. Shared May of this case: “She still exhibits clinging tendencies towards her son, but by allowing her to attend the night care programme, her son, daughter-in-law and helpers get the sleep they desperately need so that they have the energy and ability to care for Pearly during the day.
“It also allows the family to regain some time in their own lives to do things important to them or attend to their own matters. Having Pearly at the programme also gives her opportunities to engage with others who attend the programme as well as the staff. She enjoys certain games, participates in music and singing, and loves to chat with our staff,” shared May.
** There is no age limit for admission to the programme. It costs between S$20 to S$$50 per night. If anyone is interested in the programme, they can contact St Joseph’s Home’s social worker at 6268 0482 or e-mail firstname.lastname@example.org.