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This content is taken from the Newcastle University's online course, Dementia Care: Living Well as Dementia Progresses. Join the course to learn more.

Who you might want to talk to

It can feel daunting to start talking about dementia and end of life, but talking things through with someone can be really beneficial.

Talking to someone you trust and feel comfortable with can be a good place to start. This could be:

  • family member(s)
  • close friend(s) or colleagues
  • GP or another healthcare professional such as an Admiral Nurse
  • faith leader (such as a priest, vicar, imam, rabbi).

Talking about things is often the first step on the ladder to building a lasting support network and provides access to advice as well as a sense of release and relief.

If you don’t feel comfortable talking to someone face-to-face, there are online forums where people experiencing similar situations share their thoughts and experiences.

There are many organisations who can offer free telephone support. For example organisations in the United States, Canada, Australia, New Zealand and Ireland offer national helplines. Some UK examples include:

It can be isolating to feel that you’re alone in this experience, but being able to talk to someone can give you a sense of support and camaraderie. Joining a carer support group is another way of talking about your experiences and feelings. Sharing experiences with people who are in a similar situation can encourage feelings of belonging. Others may be able to share advice and tips on approaching future planning. Your GP or another healthcare professional should be able to put you in touch.

Talking about dementia and planning for the future can help you to start to think about things that are important both for you and for the person you support. Here are some tips to help get you started in your conversations with the person you care for, family, friends and professionals:

  • Write down your thoughts and feelings – putting these down on paper might feel more manageable to begin with, then you can choose to share with others when you feel ready.
  • When starting discussions with the person you care for, think about when they are most likely to be alert, comfortable, receptive and relaxed.
  • Choose a time and place where you feel at ease and comfortable.
  • Talking things through with a healthcare professional may be helpful. Booking an appointment with your GP is a good first step.
  • If it makes you feel more comfortable, take a friend or family member along to talk about things with you.
  • Current events and stories may be a useful starting point for sharing your feelings as it makes the situation less personal. This might be an article in a newspaper or magazine, a national campaign or a storyline in a soap opera.

Think about which of these tips could work for you. We will discuss these further in the next step.

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This article is from the free online course:

Dementia Care: Living Well as Dementia Progresses

Newcastle University