Receiving a diagnosis of dementia raises many questions and many emotions. Whether you were expecting the diagnosis or not, it’s a very difficult thing to hear. People living with dementia and family members describe a mix of emotions from despair and feeling that life has “just ended”, to a sense of relief there is an explanation for the changes they’ve noticed. There is no right or wrong way to feel, but it’s important to know a diagnosis is a beginning not an end. It is the first step in moving forward with dementia.
Having a name for the disease may help give a reason for the changes you’ve experienced or noticed. But it can also bring misunderstanding and stereotyping of what people ‘think’ dementia involves, especially for people living with young-onset dementia (dementia diagnosed in people under 65 years). Understanding more about particular types of dementia and their symptoms helps you know what to expect to look after yourself and how best to get and give effective support.
Many people with dementia and their supporters live meaningful, full lives after diagnosis. In this website, people with dementia and their supporters share their good and bad experiences, share challenges they’ve faced and solutions they’ve used. This, combined with up-to-date research, will help you choose your own path forward.
People living with dementia, their supporters, or carers, have found the following actions helped in their first year after diagnosis:
- Understanding the diagnosis: This helps you to make sense of what the person is experiencing and why certain changes are happening.
- Coming to terms with dementia: Feelings about having a loved one with a diagnosis of dementia are complex and sometimes get in the way of adjusting to life with dementia.
- Managing changes: There are strategies and treatments which can help with the symptoms of dementia.
- Supporting wellbeing: Supporting someone with dementia can be time-consuming, but your life doesn’t need to stop.
- Making plans and decisions: Plan for now and the future and know what supports and services can help you.
Each of these actions is a section on this website. You can work though the articles in each section in order or click on a section that is most relevant to your situation now.
