Insufficient information about dementia
Every hour, five people in the Netherlands get dementia. After the diagnosis, informal carers and people with dementia have many questions. “What can I expect?”, “what do I need to arrange?”, “where can I get support?”. In a survey by Alzheimer Nederland, almost half of the informal caregivers and people with dementia (42%) indicated the diagnosis needed more information.
The GP, especially in the initial phase, is the first point of contact for both informal carers and people with dementia. The research showed that informal carers and people with dementia feel that they receive too little information about the problems, such as the consequences on daily life, finding the right support and the end of life. The need for information is especially great in the period surrounding the diagnosis.
Lead the way
Bert (65) was diagnosed with dementia a few months ago. He and his wife Anja (61) describe this period as follows: ‘It was a tsunami of feelings. Everything at the same time and across each other. I had a lot of trouble with it.’ Gerjoke Wilmink, director of Alzheimer Nederland has this all too well: ‘We notice that people immediately make the diagnosis with a lot left behind. There is a need for support and additional information, but often it is not clear where to start. There is so much. We see a task ahead of us. To provide a first handle, to show the way.’
More attention for diagnosis of dementia
There are many questions about the diagnosis of dementia and their loved ones, both practical and practical. That is why Alzheimer Netherlands is starting a substantive campaign. This focuses on the questions surrounding the diagnosis of dementia. Five important steps that can help informal carers and people with dementia on their way are: tell family and friends and get help, request a case manager for dementia, stay socially active and live healthy, arrange your banking and record your wishes and talk to people experiencing the same thing.
If you don’t remember.. Everything in one place
Answers, information and support in the area can be found at dementia.nl/wat nu. Also new is the information package ‘Diagnosis of dementia’ with informative brochures, useful tips, experience stories and more. The information pack can be ordered free of charge at www.dementie.nl/watnu and available through memory clinics.