Many people have positive relationships with their doctor and other health or social care providers and will feel supported when receiving their dementia diagnosis and throughout their journey with dementia.
However, we have also heard from people living with dementia who have had negative experiences with health and social care providers. In some cases, these providers did not give them hope or encouragement about how to live with dementia, and did not provide the resources they needed after their diagnosis of dementia.
It is important to seek out people and resources that will talk about the day-to-day and social parts of living with dementia. There are often non-medication strategies and supports that can help you deal with your symptoms and manage your feelings. If you have lost hope, we are here to help you find it.
We have developed this website with many people with dementia who have inspired and taught us about living meaningfully.
Most people with dementia have symptoms that make it harder for them to do things, but they manage to get them done using strategies, therapy, and support from others. These individuals had some of the same feelings, fears, and uncertainties that you might be feeling. Almost all of them had lost hope at some point after their diagnosis.
However, they found hope in different ways, such as:
- 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
- participating in research to help themselves and others
- participating in research because this gave them an opportunity to do something that might help themselves and others, and because it gave them a chance to engage with researchers who have expertise in dementia
For some people finding hope was a gradual process, and 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.”
We know that dementia is a difficult chronic disease to live with and that it is likely to get worse over time. This website includes information which aims to give you hope that you can maintain your life the way it is (or 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.
Have joy in your life
Read Myrna’s story, “You can still have joy in your life” to read her poem about her progression with dementia and how she found joy.
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 evaluating this website