Using the IPOS-Dem to improve dementia care in China
21st July 2025
Around 55 million people in the world have dementia, and over 60% live in low- or middle-income countries. In China alone, about 15 million older adults have dementia—about one-quarter of all cases worldwide.
People with dementia often have other long-term health problems and experience many symptoms that can lower their quality of life. Most people with dementia die in care homes, hospitals, or at home, often without proper palliative care (care that focuses on comfort and quality of life).
Finding and treating their needs early through careful assessments could help, but many people with dementia can’t speak clearly about what they’re feeling. This makes it hard for others to understand their symptoms, leading to more distress. To help with this, a tool called the Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem) was created. It focuses on the individual and aims to better identify and manage symptoms and concerns in people with dementia.
The IPOS-Dem is based on two earlier tools used in palliative care: the Palliative care Outcome Scale (POS) and the Integrated Palliative care Outcome Scale (IPOS). It is a questionnaire filled out by care staff to assess the symptoms and concerns of people with dementia, especially when the person can’t describe how they feel. This short questionnaire is designed for staff working directly with residents in care homes. It helps measure how much people with dementia are affected by common symptoms and problems, using a scoring system.
IPOS-Dem has been shown to be practical and useful in care homes in the UK. It has also been adapted for use in other countries, including Sweden, Germany, and Switzerland. [Free versions of the tool are available at: https://pos-pal.org.]
In common with many other countries, there is a strong need for a tool like this that works well for the local population in China. Researchers at the Cicely Saunders Institute decided to translate the IPOS-Dem into Chinese and adapt it to fit Chinese culture. A team of experts—including a doctor, a nurse, a language expert, and a researcher in culture—helped create the Chinese version. Twelve healthcare workers from three nursing homes in China took part in interviews to test how well the tool worked.
The process included making sure the ideas in the tool matched across languages, translating it from English to Chinese and then back again, and having experts review the draft. Two rounds of interviews were done to make sure the questions and answers made sense in Chinese. The results showed that the Chinese version was seen as useful in real-life care. However, some phrases were hard to translate, such as “Drowsiness (sleepiness),” “Difficulty communicating,” and “Do you think they felt at peace?” It was also hard for people to judge whether a symptom was present or if it was causing distress. Choosing the right name for the tool also showed that dementia and palliative care were poorly understood.
The study showed that adapting tools to different cultures is very important. Most parts of the tool could be translated well, but phrases like “at peace” and ideas like “being affected by a symptom” were harder to explain clearly.
Chen L, Sleeman KE, Huang H, Mo Y, Bradshaw A, Ellis-Smith C. Translation and cross-cultural adaptation of Integrated Palliative Care Outcome Scale for Dementia. Palliative Medicine. 2025;0(0). doi:10.1177/02692163251347826