Some doctors, while kind and compassionate, give the impression that not much can be done for dementia. Their focus is on making the diagnosis and prescribing medical treatments. These doctors might not talk about the day-to-day or social parts of living with dementia. They might not tell you about non-medication strategies and supports that can help you deal with your symptoms and manage your feelings.
Many people with dementia feel hopeless when they are first given their diagnosis. Sometimes doctors won’t advise on how to manage the day-to-day or social impact of living with dementia. People often despair for their future and don’t know what to do next.
If you have lost hope, we are here to help you find it.
Forward with Dementia was developed with the help of people with dementia who are living meaningful, inspirational lives.
Many people with dementia manage their symptoms with the help of strategies, therapy, and support from others. They had the same feelings, fears, and uncertainties as you. Almost all of them lost hope after their diagnosis.
They found hope in different ways including:
- meeting and reading about other people with dementia (Kate Swaffer’s blog is an inspiration for many)
- using strategies which help with their dementia (e.g. John Quinn writes about his reablement strategies)
- spending time with people they love
- doing activities which are important to them (e.g. listen to Stefan & Janni’s story)
- participating in research to help themselves and others
For some people, finding hope was a gradual process. For others it was a conscious decision.
“I decided it is what it is, and I might as well go through it the best as I can.”
Dementia is a difficult chronic disease to live with. It is likely in the future your dementia will get worse. However there are things you can do which may delay the dementia process and also plan for the future. This website includes information and hope, so you can maintain your life the way it is (or even improve it) in the near future. See Coming to terms with dementia, Managing changes, Supporting wellbeing, and Making plans and decisions.
- Write down 3 good things about your life right now and why they are important.
- Spend time doing things and with people on your list.
- Set regular times in your diary for things that will that boost your health and wellbeing.
Sign up for research
Some people enjoy ‘giving back’ by contributing to research. Some people hope that their participation might have benefits to themselves such as getting new treatments. Some people find it meaningful to know that their participation will help others in the future.
- Sign up to participate in dementia research projects at https://www.stepupfordementiaresearch.org.au/