People who voluntarily care for someone with dementia experience more loneliness, psychological problems, and physical problems. That is the conclusion of Alzheimer Netherlands after a survey. A large majority experiences one or more of these complaints due to providing informal care.
Loneliness, that is the word Monique Docter (55) thinks of regarding the caregiving she provides to her husband. Ronald (57) has Alzheimer's disease. "You carry a lot alone. We have children and they do help, but I also have my parents and my mother has dementia. I also still work, so there are many balls to keep in the air."
Dementia is a collective term for a series of brain disorders. Alzheimer's disease is the best known of these. Patients suffer from memory loss and in a later stage someone has problems with thinking, speaking, and acting.
Docter recently put on paper how she experiences caregiving. She did this after a colleague asked what was going on in her head. "People become emotional when they read the text." She participated in an awareness campaign. "I receive many reactions from people who find it sad, confronting, and courageous."
Painful choices
The care for her spouse is, according to Docter, heavy but manageable. It has forced her to make choices. "We are also grandparents of very nice grandchildren, but I cannot care for them as much as I would have liked. That does hurt quite a bit, but I have no other choice. I cannot abandon my husband."
More than two out of three surveyed caregivers experience mental problems. About 65 percent experience relational problems and six out of ten struggle with physical complaints. Almost three out of ten caregivers indicate that they can sustain the care for a maximum of one more year.
For the so-called Dementia Monitor, more than 12,000 caregivers completed a questionnaire. The sample was conducted in cooperation with research institute Nivel. The results are not fully representative of the Dutch population. Caregivers with a migration background are, for example, underrepresented.
800,000 caregivers
The monitor, published on the Day of the Caregiver, according to the organization, mainly provides a good picture of how heavy caregivers experience their task.
About 320,000 people currently have dementia, with some 800,000 caregivers. These numbers will increase further due to aging, warns Alzheimer Netherlands.
"Caregiving for someone with dementia often lasts for years and becomes increasingly intensive as the years pass," says director Wiesje van der Flier. Providing care is difficult to combine with work or family life. Almost seven out of ten of those surveyed have difficulty with this. One in five working caregivers has reduced their working hours.
Much fewer caregiving hours
The monitor appears every two years and the questionnaire has been taken since 2006. This year's results largely correspond with those of recent years. There is, however, a striking outlier: the number of hours caregivers say they spend per week on care or help for their loved one with dementia.
According to the monitor, participants in the study spend on average 28 hours per week on this, a significant decrease compared to the studies from 2024, 2022, and 2020. Then it was respectively 37, 39, and 40 hours. The foundation has no clear explanation for this.
The research does show that a larger share of dementia patients reside in a care institution. This is the case for more than one in three (36 percent) of those surveyed. For comparison: in 2020 that share was about two in ten (21 percent).
Continuously 'on'
The husband of caregiver Monique Docter spends part of the day in a care institution. That makes caregiving more sustainable, she explains. "It is manageable because I still have another life, but if you are together 24/7, irritations arise." According to her, that is inevitable because she is continuously "on" and "always has to look for solutions."