The ties that bind between people with dementia and their caregivers

A dementia diagnosis places a burden on all aspects of the person’s life and on their family. Healthcare has yet to find a cure for this dreadful disease, but luckily works on innovative ways to help maintain quality of life. An example of such an innovation is the shift from traditional nursing homes organised around a medical care concept to small-scale home-like facilities, such as green care farms that rely on a sense of community. The effects of green care farms on people with dementia and staff have been thoroughly researched over the past years, but the scope of that research hasn’t completely covered the care triad. Lotus’ thesis emphasises the important role of family members and loved ones in the triad.

Lotus started at Maastricht University with a bachelor’s in Health Sciences and specialisation in Policy, Management and Evaluation of Care before starting her master’s programme. “I like to look at health from a broad perspective, but most of all I want to make sure that innovation and policy have a bottom-up approach. The needs of caregivers and care recipients should drive the changes organisations make. Those views were embedded in my bachelor’s and master’s programmes. I heard that the faculty is celebrating its 50th anniversary and is running a campaign with the slogan “ahead in health.” That was certainly the case during my studies, due to the Problem-Based Learning approach that connects research and practice. Moreover, the diversity of students, who together brought an interdisciplinary perspective on health, felt like a progressive approach."

Even during her studies, Lotus was found on the hospital floor as a volunteer. “I was a member of the Teddy Bear Hospital and chair of the Teddy Bear Doctor committee, organising visits to sick children at the MUMC+. This gave me valuable insights into hospital processes.” During her master’s programme, Lotus chose her thesis topic because the concept of innovation in the field of dementia interested her since she first heard of it during her bachelor’s programme.

For her thesis, Lotus executed a mixed-methods comparative case study. “By collecting survey data and conducting interviews at green care farms and traditional nursing homes, I was able to provide a comprehensive analysis of the experiences of family caregivers of people with dementia.” The involvement of family caregivers ranges from communication and information exchange with the organisation to participation in decision-making. Lotus found that the perceived opportunities for these types of involvement differed between the residential care settings. “In both settings, family caregivers value their involvement greatly. However, the opportunities for involvement at green care farms align more closely with the preferences of family caregivers than those at traditional nursing homes."

How family caregivers perceived their care burden differed more within the care settings than between them. ‘’Some family caregivers expressed relief compared to the home setting, while others reported little or no reduction in the tasks.” Examples of caregiving responsibilities include managing administrative tasks, participating in personal care, and fulfilling an advocacy role. Not only the responsibilities, but also the positive and negative experiences associated with caregiving vary among individual family caregivers. ‘’Care burden is influenced not only by the residential environment, but also by individual staff members, the person with dementia, and the family caregivers themselves.”

After studying the experiences of family caregivers, Lotus knows what nursing homes should focus on. “Family-centred dementia care should be promoted by integrating family involvement and individualised support for family caregivers into residential dementia care settings.” The findings highlight the potential value of innovative types of nursing homes for people with dementia and their families. 

After graduation, Lotus found work at Zuyderland where she is a project coordinator. She optimises care pathways by analysing the current patient journey, identifying bottlenecks, and leading multidisciplinary team meetings in which improvements are discussed and implemented. ‘’It brings together everything I learned. I particularly enjoy the direct connection with clinical practice, which allows us to create streamlined and efficient care pathways that meet the needs of both patients and healthcare professionals.”

Text: Ruben Beeckman