Gooie carers often run into problems due to a maze of authorities

Jaap* (85) takes care of his demented wife (79) with great love. From 2018, his wife started to exhibit remarkable behavior more and more and since then the informal care has started. The care that Jaap provides is long-term and very intensive. “As a caregiver, I need help to find my way through the maze and everything that keeps coming at me,” says Jaap.

One in three adults is a long-term caregiver, according to research by Movisie. This means that they provide care to one of their loved ones for more than three months. Jaap, among others, is an example of a long-term informal carer. “I know there are options in the field of informal care support, but I still have no idea where to go with my questions.”

Like many other carers, Jaap doesn’t know where to start. See below how many informal carers there are in ‘t Gooi and how municipalities deal with them. Text continues below.

Fragmented offer

“The attention for informal care has somewhat diluted over the years,” says Kristel Menssink, who works as a coordinator at the volunteer center in Huizen. She believes the subject of informal care is important to draw attention to. There used to be a support center for informal care, its own organization with a visible point where people could go with their questions. “The aid is still there, but it is scattered and that causes a lot of ignorance.”

Joke Dijkman (73) has been a caregiver for her husband Jan (85) for two years now. At the end of April, the couple will have been married for fifty years. Two years ago Jan suddenly fell down on the street and became completely paralyzed. He has now recovered from this paralysis, but needs Joke’s help with his daily activities, such as putting on his pajamas and zipping up his coat.

View a report about caregiver Joke below.

Municipalities are obliged to offer support to informal carers, but can decide for themselves how this is to be implemented. This creates many differences in the provision and practice of local informal care support. Take, for example, the municipality of Huizen, which has stopped offering the informal care compliment since 2021, an amount of money as a thank you for the informal carer. This compliment is still awarded in the municipalities of Blaricum, Eemnes and Laren.

One common policy

Policy advisors in the Houses, Blaricum, Eemnes and Laren, Thomas Rietveld and Paulina Mol Lous, more than agree that there is a need for change and, in particular, improvement in the area of ​​support for informal carers in ‘t Gooi. The plan of approach has been on the table for some time at the municipal office of the BEL combination. The ready plan was drawn up more than two years ago, but this has caused some delay due to corona.

“We are mainly looking at merging the policy so as not to keep reinventing the wheel in this way,” says Mol Lous. “If you work together, you can learn from each other and improve.” For example, the policy advisors have a lot of contact with the national informal care advisory team of MantelzorgNL.

“The lines between the players could be much shorter”, adds Rietveld. Houses and the BEL municipalities are considering the possibility of creating a digital information point. One joint access point with information about all possible forms of respite care, such as guidance, daytime activities, overnight accommodation, voluntary commitment where both the care providers, the clients and the informal carers can view. “With this we hope to make access a little more accessible,” says Rietveld.

ignorance

“We often notice that people themselves do not know that they are providing informal care,” says Adriaan de Jong, informal care broker in Huizen. Together with Marion Smeekes, he helps informal carers after they have both provided informal care to a family member. An informal care broker did not yet exist in Huizen, so they quickly realized where the problem lay, a large web of different agencies that offer help, but the way to get there is unclear.

“Two years ago I gave palliative care to my care recipient. What comes at you is an unbelievable amount. I received help from my GP at the time. I wonder why I didn’t know what help was available at the time”, says DeJong. “There are many different types of caregivers of all ages. It often happens that the elderly do not know where to go with their questions.”

“The elderly are less digitally skilled and nowadays everything is online. They rely on folders, flyers and radio and television messages. About eighty percent of the people we encounter in markets are ignorant,” says Smeekes. “It is therefore important that the ignorance is broken and that more awareness is created about informal care and the help that exists.”

Listen below to the story of Lilian* (61). She has been caring for her husband with Parkinson’s for almost twenty years. In addition, she has been taking care of her parents for five years. Lilian is currently receiving help from a Parkinson’s nurse and not from the municipality. For now this help is enough, but if she needs more support in the future, Lilian would like to see this differently. Lilian would like to make more use of the help and support that the municipality offers, but then she must know where to turn.

Reaching carers

In the meantime, municipalities are trying to reach out to informal carers like Lilian. ‘Do you take care of someone else?’, a flyer with that text was recently distributed in the HBEL municipality. In Huizen specifically, the PvdA is now also starting a campaign, the start date of which is not yet known. “We think it is important that informal carers are better reached and that they are also better informed about the possibilities,” says Margot Leeuwin, councilor of the PvdA.

Leeuwin realizes that now is the time to reach informal carers in ‘t Gooi, in order to be able to improve services quickly. “Because informal care will become increasingly important in the coming years, due to, among other things, an aging population, and it will therefore become an increasing risk factor,” says Leeuwin.