Caring for people with dementia: Needs and barriers of informal caregivers regarding the healthcare management platform Carenzorgt
Type of assignment: BA
In– of external?: Internal
Maximum number of students: 2
Collecting own data?: Yes
Type of research: Qualitative
EC: 15 ECs
The Netherland´s increasing aged population is associated with immense rises in health expenditure and residential care costs, creating a public health challenge. The number of people living independently with dementia will increase significantly in the coming decades, as well as the complexity of healthcare in the home situation. While ageing-in-place of people with dementia can reduce costs, it also puts more pressure on the informal care network (e.g. family members, spouses, neighbours). The organization and management of care for their loved ones, with often multiple formal and informal caregivers being involved, can become an overwhelming task.
Careplatform www.carenzorgt.nl was developed to reduce this challenge by combining communication channels and patient records into one platform, thereby enhancing collaboration within the care network and helping informal caregivers in organizing the care for their loved ones. The platform supports carers in e.g. making appointments, dividing tasks, sharing updates about the patient, communicating with professionals and accessing reports.
However, although Carenzorgt.nl has become one of the largest care platforms in the Netherlands, knowledge about its added value from the viewpoint of users is still incomplete. Questions that can be addressed are, e.g.:
How does it influence the burden of care? Which benefits are delivered for patient and care provider?
Also regarding possible future developments, essential knowledge is lacking. The UT has recently started a fundamental research project to explore how in-home sensors that monitor daily behaviours and emotional state of independently living people with dementia can be connected to Carenzorgt to provide valuable information about activities of daily living, neuropsychiatric symptoms (behavioural and emotional), disease progression and to generate alarms in case of deviations (e.g. falls). While this innovative form of monitoring opens up new possibilities for (clinical) decision making and coaching that have never been there before, the amount of potentially available real-time information is expected to increase significantly which puts caregivers into a new, maybe overwhelming (?) situation.Questions that can be addressed are. e.g.:
Which factors about the patient are relevant to informal caregivers? What does it do to informal caregivers if they suddenly "know more", especially regarding information that requires follow-up actions? When would they like to know what? Where is the limit?
Apart from this, also ethical issues can be explored, e.g.: Does communication about the patient via the platform decrease face to face visits or even increase them? Do carers see the danger of over-reliance of the patient upon an alarm system?
Aim of the study:
Aim of the study is to get more insight into the needs and barriers of informal caregivers of people with dementia regarding the care management platform Carenzorgt.
Who are we looking for?:
2 students who are interested in neurodegenerative diseases, dementia care and assistive technologies
Mastery of Dutch language is required as interviews with elderly will be performed.
Christian Wrede/ Lisette van Gemert-Pijnen