What do people with dementia and their carers want from memory services?

1. What do people with dementia and their carers want from memory services? ________________________________________________________________________________________ alzheimers.org.uk

2. Listen to people with dementia Tell me the truth Put me in control Help me to remain independent Give me help when I need it PUT ME IN CONTROL OF MY LIFE ________________________________________________________________________________________ alzheimers.org.uk

3. Help me to live my life • I want….. • An early diagnosis so that I can decide how to live my life • Public awareness to be better so that people understand • Professionals to know what dementia is and how to help • Access to good quality information throughout my journey • To be in contact with other people going through the same • To be able to get good quality advice or care when I need it • My family to have the help they need ________________________________________________________________________________________ alzheimers.org.uk

5. ________________________________________________________________________________________________________________________________________________________________________________ alzheimers.org.uk

6. Aims of the research • Explore the reasons that led people with dementia to believe something was wrong and seek a diagnosis • Investigate their experience of being diagnosed with dementia and the support they received subsequently • Find out about the ways they have adjusted and coped since being diagnosed and what else has affected this • Influence policy making and policy implementation ________________________________________________________________________________________ alzheimers.org.uk

7. Research methodology • Literature review • Nine focus groups in London, Bristol, Rotherham and Belfast • Fifteen one to one interviews ________________________________________________________________________________________ alzheimers.org.uk

8. Research participants • Participants recruited through local branches of the Alzheimer's Society • 85 participants of whom 46 had dementia • Two thirds were men • Most had been diagnosed for 2-3 years ________________________________________________________________________________________ alzheimers.org.uk

9. Improve public understanding of dementia – raise awareness of dementia • “More coverage of ordinary people saying what it’s like” • “I think the word “Alzheimer’s” should be used more often to get people educated” • “A few more Terry Pratchetts could be useful” (carer) ________________________________________________________________________________________ alzheimers.org.uk

10. Challenging stigma • “If you had a serious illness like a heart complaint…you would be channelled off into the right channel…this doesn’t happen with dementia” • “Everybody I have met has been absolutely amazed that a) I can still talk and still think, and b) that I have dementia” • “It’s as though that’s it, you are dribbling and nodding, and that’s Alzheimer's” ________________________________________________________________________________________ alzheimers.org.uk

11. Improve the experience of getting a diagnosis • “[The GP said] when you pass 70 you can expect to lose your memory a little bit” • “[The doctor said] ‘you can’t have Alzheimer’s, you are too young” • “The best he [the consultant] could come up with was, ‘well it’s Alzheimer's, what do you expect?’” • “The GPs need to have some sort of master class and bring it to the fore a wee bit, explain you know a wee bit about dementia” ________________________________________________________________________________________ alzheimers.org.uk

12. Improve the experience of receiving a diagnosis of dementia • “[The GP] has been very positive supporting both of us really…he referred straight away to the memory clinic…he has always been in touch with us to let us know what is going on. He is very positive” (carer) • “After I was diagnosed I must say the consultants were excellent, they left no stone unturned” ________________________________________________________________________________________ alzheimers.org.uk

13. Improve access to information, support and advocacy after diagnosis – information that is timely and accessible • “As you have been diagnosed there should be a follow up with information on what you have got, how do you cope with it, what to look for, what’s gonna happen, what’s not gonna happen” • “With the diagnosis should come a package…that says… this is what is available, this is what you will need…From medical through to personal care, through to financial” • “To have somebody there you can actually access” - “one care worker who can look after that person and assess everything at each stage” - “some point of contact at least every couple of months” ________________________________________________________________________________________ alzheimers.org.uk

14. Improve access to information, support and advocacy after diagnosis – information that is timely and accessible • “That was a wonderful feeling to know there were people in the right area who cared for you” • “I rely greatly on my wife and my carers…I’d be in terrible trouble without them” • “If it had not been for the [Alzheimer’s] Society then perhaps I would have given up and sat in the chair and lost interest” • “The drugs have made a huge difference. An absolutely huge difference. I mean I wouldn’t be talking to you now if I wasn’t taking the drugs” ________________________________________________________________________________________ alzheimers.org.uk

15. Develop stronger peer support networks to help people cope • “I’ve been part of a group that gets together and since I’ve got to know other people and I think of it as “we’re all in it together” and therefore I don’t feel lost…that’s very helpful” ________________________________________________________________________________________ alzheimers.org.uk

16. Coping with dementia • Getting a diagnosis • “I think getting a diagnosis is important. It’s a bit like a bad diagnosis is better than the uncertainty of none” • “It was if the thunder clouds had been taken away” • Psychological coping mechanisms and strategies • “You learn to accept it and get on with it…there’s no point in fighting it” • “I laughed my way through it. I can use selective remembering as an excuse with all my friends” ________________________________________________________________________________________ alzheimers.org.uk

17. What makes for a “good” diagnostic process? • Early, swift diagnosis • Being taken seriously and being listened to • Clear communication • Knowledge demonstrated by GPs • A holistic assessment of the person • Information and focus on what the person can still do ________________________________________________________________________________________ alzheimers.org.uk