COVID blog #12: National Informal Caregivers Day: Family involvement in long-term care facilities is essential

On November 10th, it was National Informal Caregivers Day, a Dutch initiative of ‘MantelzorgNL’ to put people that care for someone else all year round in the spotlight. We would like to express our appreciation for all informal caregivers and family members* who provide care to vulnerable people in our society. How are informal caregivers who care for someone living in a long-term care facility (LTCF) coping during the corona crisis? We interviewed a care manager and two informal caregivers to find out.

Second wave of the corona virus: impact on LTCF staff
The corona virus has hit the Dutch LTCFs excessively. The second wave (September-November) impacted the LTCFs as hard as or even harder than the first wave (March-May) did. LTCFs suffer from severe staff shortages. But reducing its general care activities, like hospitals do, is impossible for most LTCFs. Many care organizations that did not have to deal with corona infections among residents or staff before the summer, currently have corona outbreaks and need all hands on deck**. It is becoming increasingly difficult for LTCFs to have sufficient staff to care for the residents. The situation in LTCFs, however, is now significantly different in comparison to earlier this year: there is no visitors ban for informal caregivers in LTCFs. Informal caregivers were not allowed to visit their relatives in LTCFs between March and May. With mandatory registration and sometimes predetermined visiting hours, informal caregivers are allowed to visit again since mid-May.

High demand on care staff
It is a challenge for many LTCFs to have enough care staff. Many employees are waiting for the results of a corona test, are in quarantine or are sick at home. According to the branch association for care organizations ‘Actiz’, absenteeism rises to an average of about 10% nationwide. A care manager of an LTCF in the Utrecht region, where there is currently a corona outbreak, indicates that they make use of temporary workers and secondments. However, there is still insufficient staff, which jeopardizes the provision of high quality care for the elderly living in these LTCFs. Together with the uncertainty about how long the corona virus will keep spreading in LTCFs, the question arises how long care staff will be able to cope. The fear exists that care staff will become overburdened.

Family involvement of great importance
LTCFs are therefore looking for ways to – continue to – provide high quality care for the elderly. Research teaches us that the involvement of family members in the LTCF can benefit personalized care, because they know the resident and their life story, personality, preferences and needs very well. This in turn contributes to high quality of care. In our research on the consequences of corona measures in LTCFs earlier this year, we found that the visitors ban had a major impact on family members and residents. What has changed since visitors are allowed again?

In a news item of ‘Eenvandaag’, the importance of family involvement for the well-being of residents in times of corona was illustrated. By asking informal caregivers to help perform non-care-related tasks, such as cooking, walking or making a bed, the burden on care staff diminished. Since visitors were welcome again in LTCFs, the LTCF in the Utrecht region works with visiting hours. This makes it possible for family members of residents to provide extra help when the number of care staff and residents with covid-19 infections increases. Informal caregivers were formally asked by the care manager to assist care staff during meal time. More family members than expected had signed up to help. Some only came to help during meal time, others stayed longer to keep their relative company. At the same time, the care manager noticed a fear among informal caregivers of becoming infected with the coronavirus themselves, despite the fact that there was sufficient PPE.

From ‘PPE changing street’ to hygiene expert
Two family members of a resident living in the LTCF in the Utrecht region tell us that since they received the request for help from the care manager, one of them helps their mother(-in-law) with meals every day. At the start of the outbreak in the LTCF, the family members felt they were not sufficiently informed about the number of infections at the location. This was possibly due to privacy issues. However, now they find it well organized in terms of safety: a ‘PPE changing street’ has been set up for PPE and a hygiene expert is involved.

The family members tell that they used to visit their mother(-in-law) to keep her company. Now they visit additionally to support care staff. The ‘Living Arrangements for people with Dementia study’ showed an increase in family involvement in general over the past 12 years. It also demonstrated that family members do not only visit their relatives, but they also help with making coffee or tea for other residents, help during meals or assist at joint activities.

Communication is key
Although family involvement in LTCFs has positive effects, it might also lead to communication issues with care staff. Family members represent the needs of their own relative, while care staff tries to meet the needs of a larger group of residents. Care staff often indicates that communication with informal caregivers is not always easy. The family members we interviewed also confirm that communication with care staff is not always smoothly. A clear care philosophy on family involvement ensures better cooperation and communication between care staff and informal caregivers. In this way, tasks and responsibilities can be divided between care staff and family members.

Keep providing recognition and support for informal caregivers in the future
The visitors ban has made it even more clear how important it is for residents of LTCFs to have contact with their family and friends. Despite the fact that providing informal care can be burdensome, contact with the resident living in an LTCF also remains very important for the informal caregiver. The example of the LTCF in the Utrecht region underlines that informal caregivers and family members are, in some cases, needed in order to be able to continue to provide high quality care. Because of the changes in family involvement during the corona crisis, care managers and informal caregivers might have changed their perspective on family involvement. Maybe, they will see family involvement as more important because of these new experiences. In the future it is important to recognize the special position informal caregivers have in LTCFs and to make sure that they also receive the – psychosocial – support they need themselves. In this way, in cooperation with care staff, high quality care can continue to be provided to the residents. Even in times of crisis.

* We use the terms informal caregivers and family members interchangeably in this blog. In this blog we mainly refer to family and friends of residents living in LTCFs.

** In a previous blog, we described the impact of the corona virus on healthcare professionals.

With thanks to the care manager and family members who have been interviewed for this blog.

Suzanne Berlang
Marleen Prins
Henriëtte van der Roest


Published on November 3, 2020 at | Dag van de Mantelzorg: familiebetrokkenheid in verpleeghuis is onmisbaar