Many support groups are initiated by nurses and fellow health care staff to help patients and their caregivers cope with neurological diseases.
Many support groups are initiated by nurses and fellow health care staff to help patients and their caregivers cope with neurological diseases like Parkinson’s disease and dementia.
This story was reproduced from the Singapore Health Special Edition on Nursing 2016
By Celine Asril
Every month, Mr Tan Tian Seng travels 90 minutes by bus and train from his home in Marsiling to attend Parkinson’s disease support group meetings at the National Neuroscience Institute (NNI).
But the long journey doesn’t bother 60-year-old Mr Tan. “I really look forward to coming to the support group. I get to learn more about my condition and also share my experiences with those who are newly diagnosed and unsure of what to expect,” said Mr Tan, who has had the disease for a decade.
Organised by NNI nurses and allied health professionals, the support group meets every second Thursday of the month and is attended by over 30 patients and their caregivers. Patients experience tremors, stiffness in the limbs and problems walking, as well as depression and anxiety.
Though joining the support group is free and all are welcome, most members began as patients at the NNI. Mr Tan is one such patient, having undergone deep brain stimulation surgery in August 2015. The nurses supported him before and during surgery, and also during his recuperation period.
You are not alone
“The support group sessions allow our patients to connect with people who are facing similar challenges. Many find such psychological support important for them to better manage and cope with their condition,” said Advanced Practice Nurse Li Wei.
The 48-year-old has been leading the support group with Nurse Clinician Ng Hwee Lan, 51, since 2010. In addition to sharing sessions with patients and their carers, the nurses organise bimonthly talks in English and Mandarin by neurologists, neurosurgeons, therapists, acupuncturists and other health care experts. Topics range from the latest treatments to music therapy and traditional Chinese medicine.
The planning of and preparation for the group’s activities are often done outside the nurses’ working hours. But the positive response from participants makes their efforts worthwhile.
“We’re happy to see patients and caregivers coming every month to learn and interact with one another,” said Mdm Ng. “It’s very fulfilling to hear how they feel more empowered and enjoy the activities we plan for them.”
"It’s very fulfilling to hear how they feel more empowered and enjoy the activities we plan for them"
- Mdm Ng Hwee Lan, Nurse Clinician, NNI, and Parkinson’s disease support group co-lead
Nurse Clinician Ng Hwee Lan (left), Senior Staff Nurse Yvonne Chew (fourth from right) and Advanced Practice Nurse Li Wei (far right) co-lead a Parkinson’s disease support group at NNI, in which participants share their experiences candidly. Photo: Vee Chin
You are not forgotten
Singapore General Hospital’s (SGH) Brain Empowerment Support Group offers a cozy and relaxing environment for dementia patients and their carers. Advanced Practice Nurse Usanee Chotphoksap, 35, said that when the group was set up in 2011, “We wanted to provide an informal platform for them to share their personal experiences.”
Health care experts are invited to lead the sessions, which are held on the first Thursday of each month. Participants learn about different aspects of dementia, and participate in arts and crafts activities, dance, and simple games to improve their memory. They have also made mooncakes together and gone on an outing to Gardens by the Bay.
“During the activities, we chat with the participants to find out how they are doing,” said Ms Usanee. “If we learn that a participant needs help, we refer them to other health care experts such as psychologists or medical social workers.”
Understanding how the condition can be stressful for both patient and carer, Resident Nurse and support group co-lead Ms Evelyn Poh, 27, said: “The sessions are also a time for caregivers to relax and enjoy themselves.”
Mr Leong Chan Kay, 78, who looks after his wife Mdm Grace Wong, 76, has been attending the sessions for the past two years. “One of the most beneficial sessions was a talk by a lawyer about the lasting power of attorney. We also went to Gardens by the Bay, which we would never have thought of doing by ourselves,” he said.
Members of the group have also formed strong bonds with the nurses. “(The group’s members) really treat us like family,” said Ms Poh. For example, Mr Yong Chong Hiong, 89, one of the support group’s longest-attending caregivers, holidays with his wife, Mdm Chan Yeow Mei, 84, every year; upon returning, they show their holiday pictures to the nurses, Ms Poh added.
"The sessions are also a time for caregivers to relax and enjoy themselves."
- Ms Evelyn Poh, Resident Nurse, SGH, and brain empowerment support group co-lead
Learn from videos
It’s not an easy task taking care of loved ones with Parkinson’s disease or dementia – it helps to have a reliable guide at hand. Learn more about symptoms and treatment options, useful tips and simple exercises from SingHealth health care experts!
Visit SingHealth’s YouTube channel to view videos related to Parkinson’s disease and dementia, as well as useful information and health tips on a wide range of health conditions (www.youtube.com/user/SingaporeHealth
Click Here to read more inspiring stories about nurses from the Singapore Health Special Edition on Nursing 2016