When they were allowed to spend their final days at home, patients with advanced dementia ate better, showed less agitation, had less pain and needed fewer trips to the hospital, compared with those in hospices and medical facilities.
Programme Dignity, Singapore’s first palliative home-care programme specially for those with advanced dementia, revealed these positive results from their pilot programme yesterday, and the people behind the effort are calling for palliative home care to be expanded as the ageing population here grows.
Dementia is a category of diseases that cause progressive memory loss and worsening mental function. It can take years to reach an advanced stage, by which time a sufferer may be unable to talk or care for himself.
An estimated 80,000 people will suffer from dementia in 2030, compared with 28,000 in 2012.
The $1.5 million programme, funded by Temasek Foundation Cares, ran a pilot from 2014 to 2017 that was led by Tan Tock Seng Hospital and Dover Park Hospice.
Generally, people with end-stage dementia here are given palliative care designed for terminal cancer patients in hospices and hospitals.
“I promised I would never leave him alone and walk this journey all the way with him, and I’m happy I did it. He said he didn’t want to be in a hospital. It’s so important because this is your loved one – you want to do it right.” – MR CHING HONG RUI, 45, who cared for his late father full-time for eight years. The programme let him fulfil a vow he made.
This is not ideal, since both ailments are different, and dementia patients at this stage would not be able to articulate their pain and needs, said programme leader Allyn Hum, who specialises in geriatric and palliative care at Tan Tock Seng Hospital.
“People don’t understand that advanced dementia is a terminal illness and different care is needed for those suffering from it,” she said yesterday at a press conference to present the results.
This includes personal care in a familiar environment like home, instead of broad intervention in a hospital that can be intimidating.
Under Programme Dignity, medical social workers, nurses and doctors visited patients in their homes about four times a month.
Not only did they provide medical help, they also held activities such as music therapy, and taught caregivers how to recognise symptoms such as why a patient is crying or moaning.
The visits made a difference.
Close to 400 people took part in the pilot, and 331 were part of a study which found that their quality of life improved by 16.7 per cent, and pain severity went down by almost one-fifth. This was measured through assessment tools answered by caregivers related to quality of life and pain.
Behavioural problems such as eating too little, apathy and disrupted sleep cycles also showed signs of improvement.
Said Dr Hum: “I hope the programme can eventually be rolled out across the island.”
To this end, the National Healthcare Group will be working with Dover Park Hospice and other community partners to offer such care.
Mr Richard Magnus, chairman of non-profit philanthropic organisation Temasek Foundation Cares, added: “We also need to garner societal support for dealing with dementia.”
Dr Lionel Lee, chairman of Dover Park Hospice and a speaker at the press conference, stressed that care had to be person-centred, and that caregivers also needed support. “It is not just how you die, but how you live before you die,” he said.
“Letting patients live out their days in the familiarity of their homes is what this programme is about.
“It is about the dignity and quality of life, respecting each person and making every moment matter.”
For Mr Ching Hong Rui, 45, who cared for his late father full-time for eight years, the programme allowed him to fulfil a vow he made.
“I promised I would never leave him alone and walk this journey all the way with him, and I’m happy I did it. He said he didn’t want to be in a hospital.
“It’s so important because this is your loved one – you want to do it right.”