Timely Diagnosis of Dementia - Does It Make a Difference?

1. Timely diagnosis of dementia – does it make a difference? Findings from a 5-country survey of family carers Professor Emeritus Bob Woods Dementia Services Development Centre Wales Bangor University @dsdcwales b.woods@bangor.ac.uk

3. Family care-giving and dementia ‘We recognise that dementia is a significant health and social care issue which impacts not only on those living with dementia, but on their families, friends and carers too’ Vaughan Gething AM, Cabinet Secretary for Health & Social Services

4. Timely diagnosis • ‘Timely’ diagnosis recommended in many national plans / strategies (preferred to ‘early’ diagnosis) • Seen as the key to adjustment, coping and receiving appropriate help, for both the person with dementia and their carer(s)

6. Alzheimer’s Europe Carers Survey – 2017 • Survey of family carers’ experience of diagnosis of dementia • Funded by grant from Roche to Alzheimer Europe • Five national Alzheimer organisations agreed to participate • Bangor University funded by Alzheimer Europe as academic partner • Survey questions developed by project team (based in part on previous Alzheimer Europe carer survey - 2006)

7. Alzheimer’s Europe Carers Survey - 2017 • Survey questionnaires piloted with carers’ organisation in Scotland • Final questions professionally translated into Italian, Dutch, Finnish & Czech • Back-translated and cross-checked with original • Entered into Bristol On-line Survey Platform

8. Inclusion criteria • Currently supporting a family member or friend who has received a diagnosis of dementia and • The carer and the person with dementia are resident in one of the participating countries: UK (Scotland) / the Netherlands / Italy / Finland / Czech Republic • Survey available on-line (84% of responses) and paper versions • Distributed through national Alzheimer organisations (e-mail lists / newsletters / centres / social media)

9. Alzheimer’s Europe Carers Survey – 2017

10. Relationship of carer to person with dementia More adult child carers in samples from Italy & Czech Republic; more spouses in Dutch sample

11. Age of carer Median age overall: 57. (Italy – 50; Netherlands – 62; Finland – 62)

12. Education and employment status of carer • 51.5% report college education or equivalent • Ranges from 75.7% (Netherlands) to 29.4% (Italy) • Employment status varies across countries • 43.9% in employment (13.3% part-time) • 36.6% retired (25.9% Italy; 25.5% Czech Republic) • 7.8% not in employment due to care-giver role (15.6% Scotland; 2.2% Finland)

13. Age of person with dementia (now) Median age overall: 77

14. Inter-country sample differences • Greater proportion of adult child carers in Italy & Czech Republic – median age younger in Italy • Higher levels of college education in Scotland & Netherlands • Less likely to be main carer in Italy & Czech Republic • Person with dementia more likely to be living now in residential care in Netherlands and Czech Republic

15. Initial diagnosis of dementia At time of diagnosis: 53% mild dementia; 36% moderate dementia; 4% advanced dementia

16. Year diagnosis first made Median year of diagnosis 2013

17. Mean length of time between problems being noticed and diagnosis being made

18. Has the mean length of time between problems being noticed and diagnosis being made changed?

19. Looking back, do you think the diagnosis was made at the right time? 47% of carers consider it would have been better if the diagnosis had been made earlier; not delayed 1.85 years on average between difficulties being noticed and diagnosis; delayed 2.44 years on average

20. What delayed a timely diagnosis? • Attitudes and awareness of person with dementia and carer: • Person with dementia refused to seek help 37.9% • We thought it was just old age 26.1% • We were not aware of dementia 14.8%

21. What delayed a timely diagnosis? 2 • Response of professionals • First professional seen did not consider anything was wrong 33% • First professional seen did not think it worth pursuing a diagnosis 6.6%

22. What delayed a timely diagnosis? 3 • Slow systems • Referrals to diagnostic services took a long time 12.4% • Diagnostic assessment took a long time 12.7%

23. What delayed a timely diagnosis? 4 • Other factors • Carer is adult child • Dementia is more severe • Another condition diagnosed prior to the dementia • Lower age of person with dementia or carer

24. Diagnosed with another condition first?

25. Are diagnoses becoming more timely? • Compared views of those where diagnosis was made in 2014 or afterwards, with those where diagnosis made in 2013 or before • No difference in proportion of carers who thought it would have been better if the diagnosis had been made earlier: • 2014 onwards, too late: 49%; right time: 38.6% • 2013 & before, too late: 45.5%; right time: 43.8%

26. Changes in timely diagnosis

27. Are reasons for delay changing? • Attitudes and awareness of person with dementia and carer: • Person with dementia refused to seek help Post 2013 40.4% v Pre 35.6% • We thought it was just old age Post 2013 29.0% v Pre 23.6% • We were not aware of dementia Post 2013 15.0% v Pre 14.7% • Response of professionals • First professional seen did not consider anything was wrong Post 2013 28.7% v Pre 36.8% (p=0.027) • First professional seen did not think it worth pursuing a diagnosis Post 2013 4.2% v Pre 8.6% (p=0.024) • Slow systems • Referrals to diagnostic services took a long time Post 2013 14.7% v Pre 10.3% • Diagnostic assessment took a long time Post 2013 12.1% v Pre 13.2%

28. Immediately after the diagnosis, how would you describe your feelings?

29. How would you describe your feelings now?

30. Was the person with dementia informed of the diagnosis?

31. Why was the person not informed? • In 11 out of 197 instances (5.6%) in Italy of the person with dementia not being informed of the diagnosis, the reason given was that this was the person’s stated wish. • Across all countries, diagnosis less likely to be shared if late stage / severe dementia (54%) than middle (69%) or early-stage (80%), but over half of people with dementia in early-stages in Italy not informed. • Examples of reasons for not informing the person given by carers from Italy & Czech Republic: • ‘the doctor decided’ • ‘He wouldn’t understand it, it’s pointless to torment him with it.’ • ‘she did not understand’ • ‘it would hurt her’ • ‘For fear that he could get scared and react badly’ • ‘He would not understand’ • ‘Choice of family members’ • ‘It is considered to be a cause of stress’ • ‘He does not realize it’ • ‘The neurologist who has diagnosed the disease has not recommended because the patient is very anxious and disturbed by the loss of memory’

32. Pre-diagnostic counselling • Where the diagnosis was shared by a healthcare professional in a meeting attended by the carer: • Was the person with dementia asked if he / she wanted to know the diagnosis before the diagnosis was made? • Agree / strongly agree 26% • Was the person asked who else should be involved? • Agree / strongly agree 28%

33. Communicating the diagnosis • Where the diagnosis was shared by a healthcare professional in a meeting attended by the carer: • The doctor sharing the diagnosis explained everything clearly • Agree / strongly agree 81% • The specific diagnosis was stated (not vague terms such as ‘forgetfulness’ or ‘memory problems’) • Agree / strongly agree 79% • The doctor established a good relationship with the person with dementia • Agree / strongly agree 64% • A clear, written summary of the meeting was provided • Agree / strongly agree 47% • Clear arrangements were made for further contact and follow-up • Agree / strongly agree 60% • The quality of diagnosis-sharing is related to impact and adjustment of carers – short- and long-term

34. The emotional impact on carers of the quality of diagnosis sharing, immediately after diagnosis and at present time

35. Information received post-diagnosis • Most frequently received by carers: • Drug treatments 56% • About dementia 48% • Disease progression 38%; Alzheimer organisations 38% • Carers would have liked more information about: • Practical coping and living well with dementia 51% • Services available 46% • Disease progression 42% • 20% of carers report no information provided at all

36. Post-diagnostic support in 6 months following diagnosis - unmet needs • One third (33%) accessed a service providing a named contact person or service, who could assist in signposting to services and who the carer could contact if needed • Ranged from 10% (Italy) to 60% (Netherlands) • An additional 38% would have liked to have accessed such a service, but it was not offered • Ranged from 57% (Italy) to 18% (Netherlands) • Assessment of carer needs accessed by 13%; additional 51% would have liked this • Care plan for person with dementia: 22% accessed; 45% would have liked • Counselling / emotional support • For person with dementia: 8% accessed; 45% would have liked • For carer: 12% accessed; 43% would have liked • Training / education for carers: 11% accessed; 41% would have liked • Memory aids / cognitive stimulation for person with dementia: 10% accessed; 40% would have liked

37. Service response to emotional impact of diagnosis • Counselling / emotional support for carers in 6 months after diagnosis • Of those who reported sadness / depression immediately after diagnosis: • 17.9% of male carers used such a service • 12.4% of female carers used such a service • 33.3% of male carers would have liked to use such a service, but it wasn’t offered • 52.4% of female carers would have liked to use such a service, but it wasn’t offered

38. ‘Caring for a person with dementia often makes me feel lonely’ • Agree / Strongly agree: • Males 50.4% (spouses 56.5%) • Females 58.1% (spouses 66.5%) • p=0.035 (spouses p=0.041) • 70.6% (spouses 78%) of those who report now feeling sad or depressed about the diagnosis also report caring-related loneliness (p<0.0001)

39. ‘People tend to stay away once they know someone has dementia’ • Agree / strongly agree: • Males 41.1% (spouses 41.2%) • Females 49% (spouses 44.6%) • p=0.029 (spouses p=0.49) • Associated with feeling lonely related to care-giving: • 67.7% (spouses 76%) of those who agree / strongly agree with this statement agree / strongly agree that they feel lonely related to care-giving (p<0.0001)

40. Limitations • Sample not representative of all carers of people with dementia • More likely to be college educated • Daughters over-represented? • Already in contact with Alzheimer’s Society • Survey method may restrict responses • BUT – large sample, range of experiences • Survey allows some limited comparison across European countries

41. Conclusions • Timely diagnosis hindered by: • Difficulty distinguishing dementia from old age • Reluctance of person with dementia • Attitudes of some professionals • No evidence overall of improvement in carer perceptions of diagnosis as timely or of a reduction in time to diagnosis from problems being noticed • When diagnosis not seen as timely, carers more likely to report negative emotions immediately and some years later • Important differences in diagnosis disclosure – quality of sharing diagnosis makes a difference • Significant unmet needs in provision of information and in post-diagnostic support • Continued need for awareness raising / education

42. Thanks to: • Ana Diaz, Dianne Gove, Jean Georges, Alzheimer Europe • Martina Mátlová, Czech Alzheimer Society • Lindsay Kinnaird, Alzheimer’s Scotland • Wendy Werkman, Susanne van den Buuse, Alzheimer Nederland • EilaOkkonen, Anna Salmi, Alzheimer Society of Finland • Mario Possenti, Francesca Arosio, Federazione Alzheimer Italia • Jen Roberts, Bangor University; Emma O’Shea, Dublin City University • Thanks to all carers who participated • Thank you!