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1.5 Have hope

Life with dementia can be meaningful and bring surprising rewards.

Have hope through the good and bad

Many people have positive relationships with their doctor and other health or social care providers and feel supported when the person they care for receives their dementia diagnosis and throughout the journey with dementia. However, we have also heard from care partners 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 care for a person living with dementia, and did not provide the resources they needed after the diagnosis of dementia.

  • It is important to seek out people and resources that talk about the day-to-day and social parts of caring for a person living with dementia.
  • There are often non-medication strategies and supports that can help with symptoms the person you support is exhibiting and how to manage your feelings and theirs. If you have lost hope, we are here to help you find it. 

Forward with Dementia was developed with many care partners who have inspired and taught us about living meaningfully.  

Catherine, a care partner for her mom, advised,

“I would say to anyone that is fearing a diagnosis to take what you want from all the expert advice out there and from other people’s lived experiences and make it your own. You have the power and ability to do that. You are the director of your own journey.”

Read more about how Catherine, her mother and family members approached life after a diagnosis of dementia here.

Many care partners of those living with dementia had similar feelings, fears, and uncertainties that you might be feeling right now. Almost all of them had lost hope at some point.  

Care partners have found hope in different ways, such as: 

  • Meeting and reading about others who are care partners for people living with dementia 
  • The Caregiver’s Voice blogs have been an inspiration for many 
  • Claire Webster describes her journey as a caregiver to her mother and shares some very important lessons that she learned along the way.  
  • Doing activities which are important to them 
  • Participating in research and becoming a dementia advocate

For some people, finding hope was a gradual process, and for others it was a conscious decision.

One care partner told us:

“There’s good days and there’s bad days, but, you take each one as it comes. Everybody is just doing their best”.

 

Practice positivity

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.

Participate in a research project

Some people enjoy ‘giving back’ by contributing to research.

Their participation might benefit themselves such as getting new treatments or it might benefit others in the future.