The caring role and the family
Caring for someone with a younger onset dementia can be very challenging. Many people never imagine being a carer for a partner, relative or friend in early or mid-life. It is often the case that the diagnosis of younger onset dementia is delayed and this delay and associated uncertainty of diagnosis can cause considerable stress to all involved.
A diagnosis of dementia can come as a shock, even after years of doctors’ visits and medical investigations. In the initial stages shock, sadness, anger and disbelief are common reactions to the diagnosis. These feelings are normal. When a person is younger, a diagnosis of dementia raises many challenges for the rest of the family. People with frontotemporal dementia are generally active, mobile and physically capable. As a consequence caring for a younger person is more demanding than caring for an older person. The person may have been in full-time employment, actively raising a family and be financially responsible for the family. A carer may have to juggle caring for the person with dementia with employment, childcare, and even care of an older frail parent.
Everyone feels differently about becoming a carer. People react in different ways. “Why me?”, “Why our family?”, “What did we do to deserve this?’, “What caused the disease?” These are very common questions often with no definitive answers. This uncertainty can lead to feelings of anger and frustration. By obtaining an accurate diagnosis you can begin to learn about the type of dementia, the causes and symptoms, and what to expect in the future. Your feelings and experiences are individual and may differ from those of other carers. You will feel many different emotions along the journey.
