Caregiving Manifesto

Caregiving is everyone’s concern. You are a caregiver, you will be a caregiver or you are someone who receives or will receive care.

The manifesto below is also available as a PDF.

The government has consciously settled on “living at home longer”, based on a participation society. A retrenchment that shifts a lot of pressure and care over to 4.4 million caregivers. The counterproductive effects of this were not taken into account. There is a lot of praise for caregivers, but in reality many succumb to mental and financial pressure. What’s more, four years after the decentralization, policy is laid down about caregivers instead of with caregivers and this has to stop. Every caregiving situation is different and the support should be configured accordingly. There is no such thing as ‘the’ caregiver. It is something we do, not who we are. It is because of these signals from society, and the results of our own research, that we sound the alarm.

We urge the central government and the municipalities to actually align their policies with the needs and the input of caregivers in The Netherlands. Genuine participation and affiliation are necessary to safeguard the interests of caregivers. The following ten fundamental key elements are crucial in the further emancipation of caregiving:

The policy should be based on a representative part of the caregivers, and the different groups, each with their own specific needs, should be acknowledged.

The current policy is based on a response of 0.01% of the caregivers in The Netherlands and relates to mainly elderly people over 70. The largest group of caregivers is between 42 and 65 years old. These people often have their own families, a job and other commitments to deal with as well. In addition, special attention is needed for overburdening, (alive) mourning, young and/or studying caregivers and caregivers with a migration background.

Provide transparent support based on the needs, the situation and the demands of the caregiver.

Customization is lacking and the supply is mostly targeting regulations and procedures instead of reducing the pressure on regulations and care. From that aspect, the caregivers needs should be the guiding principle. The necessary information is often untraceable or circuitous and indications and applications are time consuming and unclear.

Earmark the money made available to the municipalities for the support of caregivers.

The currently allocated budget has no mandatory spending obligations and municipalities can spend this money on their own discretion on all the various fields within their financial household. Using this caregiver money to eliminate municipal deficits, or to finance projects that are of no use to the caregiver, is undesirable.

Ensure that the municipalities are more clearly accountable in terms of caregiver support

The accountability now focuses on a best efforts obligation on secondary conditions and is not based on a demonstrable accomplished result where the caregiver is supported. Furthermore, it is not clear if or when the municipal policy will be evaluated and adjusted. Testing of the delivered quality of customization is desirable.

Provide the caregiver with a full-fledged position in society

Becoming a caregiver is not a personal choice and there are many duties but absolutely no rights. There is no join in with patient rights, client rights or employment rights. There is no legal status despite the fact that there is, however, liability for (medical) chores. This is also not to be confused with volunteering.

Make the caregiver a full partner in the care for their loved ones

A caregiver is a strong expert by experience. This experience should be appreciated and efficiently implemented in the professional world as to serve as the basis for the development of research or policy. Commission experts by experience professionally, the same way it is done at the GGZ. Make the responsibilities and powers with regard to medical chores more transparent.

 

Specific employment policies with regard to caregiving should be made mandatory for employers

Caregiving is usually not a topic for discussion in the workplace and caregiving-friendly employment policy is not self-evident. The lack of flexibility and direction increases the pressure on the caregiver needlessly. Fear of losing their job, together with the pressure of caregiving causes the caregiver to work even harder, with all its consequences.

 

Compensate for the loss of earnings for caregivers who had to reduce their working hours, take an unpaid carer’s leave or who were forced to stop working altogether to take care of their loved one.

The loss of earnings puts the caregiver in a tight corner. To stop giving care is not an option and the additional financial pressure caused by less income and more expenses makes it often unbearable. The current legislation does not provide for financial assistance for caregivers.

 

Guarantee at least a token of appreciation for caregivers

The fact that municipalities establish different priorities, causes undesirable differences in the appreciation of caregivers. Even this little gesture is now being cut back in various municipalities. Here, too, it is significant to provide transparency and predictability. We are not a closing entry.

 

Acknowledge the diversity among caregivers. One size fits all is not applicable here

We are as diverse as our society. The thing we have in common is the care for our loved one. As long as our tasks and our social environment are not taken into account, specific customization is impossible. Specific competencies and a flexible attitude are needed here to change the direction of support from tightly supply-oriented to demand-driven.

 

The Netherlands, August 2019. Marjolijn Bruurs, Aletta Makken en Margreet van der Voort

This manifesto is drawn up by caregivers, starting from the diversity of caregiving and their personal lives. The representatives come from all over The Netherlands and are young and old, they work or work no longer, have been providing care for a long time or a short time and are dealing with various syndromes. We take care of partners at home – loved ones in nursing homes – parents living at home – special needs children – loved ones with a migration background – brothers and/or sisters – foster children, neighbors and other loved ones. In addition, the manifesto has been tested out by well over 10,000 caregivers through various forums, sites and groups on the internet. Their input has been incorporated in the manifesto above.

Please support us and sign the petition: https://petities.nl/overheid-praat-met-mantelzorgers-en-niet-over-mantelzorgers