Abstract

Informal carers caring for someone with an intellectual disability or psychiatric disorder together count for approximately a fifth of all informal carers in the Netherlands. In many cases however, the support services for informal carers are focused on those providing informal care to older people or people with physical disabilities. The ‘special’ informal carers accordingly feel they have been overlooked when it comes to informal carer support. Their complaints beg the question of precisely what their specific support needs are. Therefore, the Netherlands Institute for Social Research (SCP) decided to carry out specific research in partnership with the Community Care department of Hogeschool van Amsterdam, University of Applied Sciences (HvA) among these two groups of informal carers.

The study seeks to provide an answer to two related questions: what is the nature and extent of informal care provided to people with an intellectual disability or psychiatric disorder, and what is the need for support among these groups of informal carers? First, a secondary analysis was performed on the data from a national survey of informal carers carried out by SCP. Those providing informal care to people with intellectual disabilities (ID), to people with a psychiatric disorder (PD) and ‘all’ informal carers were compared with each other. In addition, a qualitative study was carried out among representatives of the two groups of ‘special’ informal carers. Students from HvA conducted a total of 53 structured interviews (26 ID, 27 PD).

People who care for someone with an intellectual disability or psychiatric disorder turn out to be two special groups of informal carers: because they are clearly different from other informal carers, because they experience caring for a loved one in different ways, and above all because they have a different perspective on and opinion of professional care. During this presentation, I will tell more about these three themes, but the main focus will be on the last theme. Although there are many informal carers who are positive in their views about professional carers, there is also a good deal of dissatisfaction with the professional care system. It also turned out that the two groups of informal carers differ in their need for (specific) forms of support. The existing provisions do not seem to match the needs of the special informal carers.

During the presentation, I will tell more about these special needs. It requires local authorities to broaden the range of support they provide to informal carers. At the same time, they can reduce the use of and above all the need for this informal care support by involving informal carers in their own policy and provisions. However, care professionals can also undertake activities to relieve the burden of informal carers of their clients. Informal carers say that their greatest need is to have their experience recognized and to be treated as partners in the care provision. Investing first and foremost in these aspects would therefore appear to be an attractive option for care providers.

Slides