Project
Completed
2021

Dementia Monitor Family caregiving 2020 (Feb-Dec)

Duration: Dec 2019 - Mar 2021

Background
Dementia is a disease that also affects carers. Since 2006, Nivel, in collaboration with Alzheimer Nederland, has been conducting questionnaire surveys among informal caregivers every 2 to 3 years: the so-called Dementia Monitor Informal Care. The 2020 poll has a formal start from February 2020 and will be completed by the end of 2020.

Subjects
- Care burden on the caregiver. This remains an important theme because, in policy and in practice, there is an increasing demand for informal carers.
- Needs and experiences with care and support. This theme is still current and relevant and relates to needs and experiences with care and support. As in the previous survey (2018), the 2020 survey will therefore focus on: needs and experiences of informal carers with case management; needs and experiences of informal carers; experience necessary care or support to enable people with dementia to live at home for as long as possible; which care/support informal carers find most important for good quality of intramural care for the elderly.
- Understanding from the environment for dementia, the perceived influence of dementia on the social participation of informal carers and on their social contacts. These are topics that tie in with the importance that Alzheimer Nederland and other policy and field parties attach to promoting a 'dementia-friendly society'.
- Needs and experiences with 'advance care planning', partly in relation to care in the last phase of life. This is a new topic in the current poll. We want to provide insight into the extent to which informal carers and their relatives with dementia are prepared for care in the last phase of life.

Results
At the national level, the results are reported in a public digital report, with information that Alzheimer Nederland and other parties can use for national policy and advocacy. At the regional level, results are described in mirror reports for regional dementia networks.
Funding
Alzheimer Nederland
In this project we work together with
Alzheimer Nederland