Box 1.

Case stories based and examples drawn from qualitative interviews and results of epidemiological findings

Samuel and Rose Samuel has dementia. His wife, Rose, takes care of a lot of things around the house. He describes how he feels about making decisions: “Quite happy to go along. My wife is a very good judge of character and I won’t interfere with that at all. If she says we’re going to have chops for dinner, I won’t argue because she’s such a good cook and there’s no point in talking about it any more.” – Samuel Samuel is happy for others to make decisions for him Decisions may be discussed, but when asked, Samuel often says to Rose; “That’s up to you. You do what you think” Samuel may be finding it difficult to make certain decisions

Gloria Gloria has always been a very independent lady and has lived on her own for a long time. She is reluctant to accept any support as she feels this will compromise her independence. “My independence is really important to me, and I know if someone came in and started telling me how I should run things or do things, I think I would certainly retaliate and not conform to anything they would want to do.” – Gloria Gloria has always made her own decisions. Gloria does not like other people interfering. Gloria doesn’t like asking for help. Others around Gloria may have tried to help, but Gloria has declined this.

Hal’s Story: I have trouble with my hearing and my sight “Hearing can be a worry. In a noisy place I will miss a lot of information or conversation that’s going on.” – Hal If you’re concerned about your hearing or vision, book an appointment to have your hearing and sight tested. High street opticians often offer both services. If you already have hearing aids it might be worth checking you have the correct batteries, or that your hearing aid isn’t broken. If you already have glasses, perhaps your prescription may need to be updated as sight can change. In group situations ask people to speak more loudly, clearly, or repeat what they are saying if you didn’t catch it the first time.

Ben and Sade Privacy – Some people prefer to keep information about their lives and health conditions private “We haven’t told the neighbours – there’s no need to. We hardly meet the neighbours, really. They’re not the sort of neighbours like we’re used to.” – Ben and Sade Worry or fear – Some people are worried about how others will react if they know about their diagnosis. They may feel like this about everyone, or just certain people.