Caregiving in focus: research into resilience and loneliness

Millions of people in the Netherlands provide informal care for someone close to them. This is valuable, but it can also be demanding. How can we ensure that informal caregivers are able to continue providing care? And what impact does long-term caregiving have on their own well-being? Ahead of National Caregivers Day, researchers Jasperina Brouwer and Karsten Knol discuss two research projects that explore these questions from different perspectives.

In her Vidi-funded project, Shared Networks: Connecting Informal and Formal Care for Sustainable and Inclusive Care, Jasperina Brouwer investigates the conditions needed to make informal caregiving sustainable. She looks not only at the capacity of individual caregivers to provide care, but also at collaboration between care recipients, their relatives and professional care providers. Legislation and regulations, as well as societal views on responsibility for care, also play a role.

The key question is how to ensure that sufficient care remains available, particularly as demand for care continues to increase. Brouwer uses questionnaires, social network research and focus groups to map the various factors involved. She then develops simulation models to explore the implications of different choices for future care capacity.

Loneliness
In the project Loneliness in Close Relationships: Shedding Light on Informal Caregivers, PhD candidate Karsten Knol and Brouwer are working with a consortium (including fellow UG researchers Annette van der Putten, Jorien Luijkx, Annet ten Brug and Amber Vellinga-Dings) to investigate how loneliness develops among people who provide intensive, long-term care for someone close to them. These include parents of children with complex care needs, partners of people with chronic conditions and young adult caregivers.

The initial findings are striking: approximately 80 percent of questionnaire respondents experience some form of loneliness. This is not so much about a lack of social contact, but rather emotional loneliness: the feeling that nobody really understands what you are going through.

One young adult caregiver, for example, spoke about her father, who has young-onset dementia. She has many friends, but finds it difficult to share her worries with them. While her friends are preoccupied with exams, she wonders whether she is spending enough time with her increasingly frail father. She also does not want to place an additional burden on her mother. Ultimately, she is left to deal with her worries alone.

The researchers are currently completing the first phase of the study. In the second phase, they will investigate how informal caregivers can be better supported, for example through new or adapted interventions.

Practical help makes a difference
What can we do better to support informal caregivers? According to Knol, it helps to offer specific assistance rather than simply saying, ‘Let me know if there is anything I can do.’ This could mean doing the shopping, babysitting or helping out in the garden. Reducing bureaucracy and taking a more personal, compassionate approach to applications for support could also save caregivers a great deal of stress.

Brouwer and Knol believe National Caregivers Day is important, but emphasise that recognition should not be limited to a single day. Informal caregivers dedicate themselves to others throughout the year. They therefore need proper support and attention to their well-being all year round.