Have the difficult conversations
Having dementia often changes your relationships with the people around you. Other people might feel awkward or uncomfortable talking about dementia, or about your relationship. Discussing your dementia and your wish to be supported or not, is often part of moving forwards with dementia.
Here are some suggestions for ways to approach the hard conversations with family and friends:
- Talk to people face to face.
- Talk to people by phone.
- Write them a letter, and then talk.
- Write down the points you want to make, so you don’t forget anything.
- Talk to people separately.
- Have a family meeting.
- Ask someone you trust to be there as you talk to other people.
- Talk about what your goals are, how you feel, and how you want to be supported (read the page 2.13 Manage how you do and do not want to be treated).
- Avoid criticising others.
- Try not to bring up negative things from the past, focus on now and the future.
Here are some suggestions for ways to approach the conversations with doctors and other health professionals about support that you’d like from them:
- Write down points you want to make, so you don’t forget anything.
- Be specific and clear about your requests (e.g. “I’d like a dementia chronic disease management plan”) or questions (“How likely is it that I’ll lose my driver’s licence?”).
- If you feel like your doctor, health professional or service provider is not listening to you, or not respecting your wishes, try another.
- Ask for your life plan to be supported by your clinical or service care plan. The Australian Clinical Practice Guidelines for Dementia suggests that people with dementia have a clinical care plan (could also be called a chronic disease management plan for dementia) which is a plan for the management of dementia. Many people with dementia don’t get such a plan, so you might need to ask your GP.
- You can also read the ‘Consumer Campanion Guide’ to the Australian Clinical Practice Guidelines to ensure you are aware of current evidence based recommendations for post-diagnostic care.
Read the page 2.10 Tell other health professionals which includes advice on being assertive with doctors and health care professionals.
Use services to stay independent
Some people are reluctant to use services because they worry that it means giving up their independence. Once they start using services though, many people find that they maintain their independence, and the additional practical and emotional support increases their wellbeing.
Here are some key things that you should know about services in Australia:
- The system is hard to navigate and not user friendly.
- There can be a long wait (a year and more) between starting to apply for a service to receiving it.
- Services are meant to be ‘consumer directed’, this means that you are meant to 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 the services they provide.
- Many staff have had minimal training in relation to dementia.
- For some services you pay a contribution to the costs, with the government funding the rest.
To find out more about what services are available to people with dementia, read the next page 5.3 Plan to use services.
Put your life plan into action
- Talk to your family, friends and health professionals and get their help to put your life plan into action
- Use services to help put your life plan into action.