In a recent doctoral thesis from the Norwegian University of Science and Technology (NTNU), more than 500 caregivers describe the extent to which they have subjected elderly people with dementia living at home to violence, abuse and neglect.
Two out of three caregivers report having committed at least one such act against the person with dementia they care for during the past year.
An incident of abuse can range from humiliating scolding, yelling, threats and pushing to being pressured into transferring money or property. In the study, the most common type of incident was psychological abuse.
One in five caregivers reports having committed ten or more such acts against the person with dementia they care for over the past year.
Caregivers can range from the person's spouse to a neighbour.
Municipal funding must be strengthened
"If action is not taken immediately, the future for the elderly in many Norwegian municipalities looks pretty bleak," said Wenche Malmedal, professor at NTNU.
We already have a large ageing population, but so far, it is only a ripple compared to the silver tsunami that is on its way. In the next 20 years, there will be 250,000 more people over 80 years old in Norway. In just five years, there will be more elderly people than children in Norway for the first time.
It is estimated that there are just over 100,000 people currently living with dementia in Norway. By 2050, this figure is expected to more than double.
We have been aware of this development for a long time. However, there are fewer nursing home spaces now than before. Instead of increasing capacity, it is being reduced."
Susan Saga, associate professor at NTNU
Malmedal believes that municipal funding needs to be significantly strengthened - there is a need for more round-the-clock care spaces.
Taking sick leave to care for the elderly
"The current system is not designed to handle what is happening now or in the future. We are aware that many people choose to take early retirement, reduce their working hours, or take sick leave in order to care for their elderly relatives. Given that there aren't enough people in the current workforce in Norway, this is hardly a good solution," said Malmedal.
Both Saga and Malmedal have been supervisors for Gunn Steinsheim, who wrote her doctoral thesis at NTNU. It provides a glimpse of what it can be like for an elderly person with dementia currently living at home in Norway.
As mentioned above, two out of three caregivers have committed at least one abusive act against the person with dementia over the past year.
The episodes of violence, abuse and neglect are distributed as follows:
- 63.5% psychological
- 9.4% physical
- 3.9% financial exploitation
- 2.4% sexual acts
- 6.5% neglect
Violence can go both ways
Some caregivers report that the person with dementia has carried out similar acts against them, and one in three caregivers has experienced aggression from the person with dementia they care for. In these situations, psychological abuse is also the most prevalent.
The risk of violent episodes by caregivers toward people with dementia was higher when the caregiver was a spouse or partner of the person with dementia, and when they experienced aggression from the person with dementia.
Stensheim points out that the caregivers may be struggling with their own health problems, and that the ability to cope with a demanding caregiving situation will vary. In addition, it is quite common for people with dementia to develop challenging behavioural and psychological symptoms.
The study also shows that these symptoms are closely linked to a high perceived caregiving burden among caregivers.
"Even though the vast majority of caregivers provide good care, we cannot help but wonder whether the limits are being pushed too far by leaving major caregiving responsibilities to this group of people. The answer to that is an emphatic yes," said Gunn Steinsheim, assistant professor at NTNU.
Her thesis shows that many caregivers had clear symptoms of anxiety and depression.
"We do not know if this is due to the caregiving burden, but it is easy to imagine that it could well be," explained Steinsheim.
System failure and underfunding
"If caregivers do not receive enough support, you risk ending up with two people in need of help instead of one," said Malmedal.
In addition to significant political efforts that genuinely improve municipal funding and more round-the-clock care spaces, the thesis shows that even small changes can make a big difference.
"The risk of abuse can be reduced by having a municipal contact person who has knowledge about dementia and who can also assist with bureaucracy and provide proactive support. Some municipalities have good systems in place, but not all," explained Steinsheim.
Saga believes that what this thesis and other similar studies show is a result of system failure and underfunding.
"No one wants the elderly to suffer, or for them to be left to caregivers who have to work themselves to the bone taking care of them," concluded Saga.
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