Have the hard conversations
Having dementia often changes your relationship with the people around you. Other people might feel awkward or uncomfortable talking about dementia and how it affects your relationship. Discussing your diagnosis and your wish to be supported is a key step in moving forward with dementia.
Here are some suggestions for ways to approach the hard conversations with family and friends:
- Talk to people face to face.
- Have the conversation in a quiet and calm space, away from other distractions.
- If you don’t want to talk to them face to face, talk to people by phone or write them a letter, and then talk.
- Before you talk to your family and friends, write down the points you want to make so you say what you want to say.
- Practice what you want to say before the conversation occurs.
- Talk to people separately.
- Have a family meeting.
- Ask someone you trust to be with you when you talk to other people.
- Talk about what your goals are, how you feel, and how you want to be supported (read 2.12 Manage how others treat you).
- Avoid criticizing others.
- Try not to bring up negative things from the past, focus on the present and the future.
Suggestions for ways to approach the hard conversations with doctors and other health professionals:
- Write down points you want to make so you don’t forget anything.
- Be specific and clear with your requests (e.g., “I would like a care plan”) and questions (“How likely is it that I will lose my drivers license?”).
- If you feel like your doctor, health professional, or service provider is not listening to you or not respecting your wishes, try another. However, depending on where you live, it might be difficult to find another family doctor or nurse practitioner. Talk to family members and friends, and look online to see which doctors are taking on new patients
- Ask for your life plan to be supported by a clinical care plan. Many people with dementia are not given a care plan so you may need to as for one.
Use services to stay independent
Some people are reluctant to use services because they worry it means giving up their independence. However, most people find that they maintain their independence and enjoy improved wellbeing thanks to the practical and emotional support that services provide.
Here are some key things you should know about services in Canada:
- The system can be hard to navigate and is not always user-friendly.
- There can be a long wait between starting to apply for a service and receiving it.
- Services are meant to be ‘consumer directed’. This means that you should have a say in what help you get, who gives you that help, and how you get that help.
- Companies vary in the quality of services they provide.
- Staff often receive minimal training on dementia.
- Some services require you to pay a portion of the cost, with the government paying the rest.
For more information read the article: Plan to use services.
