DEPARTMENT OF HEALTH. Citizens Engagement Consultation

Transcription

1 DEPARTMENT OF HEALTH Citizens Engagement Consultation October 2017 Dr Claire Thomas Daniel Morris Belinda Herbert Opinion Research Services (ORS)

2 Reporting on the Citizens Engagement Consultation The survey designed by the Department of Health Available on gov.uk Option to complete online or on paper Designed for people with dementia OR carers Fieldwork between Nov 2 nd 2016 and Jan 31 st 2017 Results analysed by ORS Please note that the findings are not necessarily representative of the population of people with dementia or their carers or relatives

3 Who took part 606 completed surveys 94 people with dementia 552 caring for someone with dementia 40 people falling into both categories Gender 23% 77% Overall 3 in 4 respondents were women But men were greater proportion of people with dementia (39%) 4 in 5 respondents (82%) were 65 or under 2 in 3 (67%) of those with dementia were under 65 Half (50%) were diagnosed over 18 months ago Around 1 in 7 had been diagnosed in previous six months Over 75, 6% 66-75, 12% 51-65, 52% Age Under 50, 30%

4 Diagnosis

5 Four in five had been given a more specific diagnosis A fifth said they were not given a specific diagnosis The most common diagnosis was Alzheimer s followed by Vascular dementia Alzheimer's Disease 32% Vascular Dementia 23% Mixed Dementia 13% Frontotemporal Dementia Dementia with Lewy bodies Other - not specified 4% 3% 5% No specific diagnosis given 18% No answer 1% Q10. Following the diagnosis of dementia were you given a more specific diagnosis?

6 3 in 5 felt the diagnosis was communicated well Not very well 24% Not very well at all 16% Very well 22% Well 38% The consultant explained everything perfectly and made sure he was understood I was not told personally I found out by reading my mother s hospital discharge notes then had to chase the doctor to get a formal diagnosis. Information was given in laymen's terms and it was encouraging and not so doom laden Q13. How well was the diagnosis communicated to you as a person with dementia or as a carer?

7 Support

8 Just under 2 in 5 rated support they received as good Very Poor 26% Very good 13% Poor 17% Neither good nor poor 19% Good 25% Respondents comment that a person with dementia needed to be persuaded to take up support takes more than one offer The system sometimes requires too much from the person with dementia following up on accessing support Level of carer involvement to access support can be prohibitive for some Q21. Overall how would you rate the support you received?

9 But majority felt support could be improved 87% Support could be improved Q22. Could the support you received have been improved?

10 7 in 10 said it had been very difficult to access support 41% Very difficult 30% Quite difficult 23% Quite easy 5% Very easy Q18. How easy or difficult was it to get support?

11 There is a link between support, involvement and satisfaction Those who found it easier to get support were more likely to feel they were involved in decisions be satisfied with the support they received. Providing the right support at the right time is important to improve overall satisfaction 71% Hard / very hard to get support Research should focus on identifying where, when and how people expect to access that support 87% - support could be improved 39% rate support as good / very good 63% - involved / very involved in decisions Q18. If you, as a person with dementia or as a carer, have received support, how easy or difficult was it to get support? Q20: How involved were you in decisions about the support you were given? Q21: Overall, how would you rate the support you received?

12 Wider Understanding

13 Some concern about understanding amongst professionals Respondents felt charities were most likely to understand dementia There was less confidence in others they might have expected support from Just over half (55) felt staff from social services understood the condition A similar number (51%) felt staff at their GP surgery understood the condition 55% Staff from social services 81% Staff from charities 52% Clinical staff in hospitals 51% Staff at GP surgery) 33% Non clinical staff in hospitals Q29. As we go about our daily lives we come into contact with all sort s of people, and some of these are listed below. In your experience as a person with dementia or as a carer how well do you think these people understand dementia?

14 What people need to know about dementia Respondents were asked what they think people need to know about dementia. A selection of responses provided to this question are shown below: I think people need to be taught or be understanding and not dismissive of people with dementia and to still take time to talk to them at their own pace They need to understand that people with dementia can't help the way they behave and that they need to feel safe and reassured that they're doing ok. People need more information and explanations about how it can affect the person and carers. More needs to be done to support families and people with dementia. Care homes need more staff for better care. People need to know how to treat people with dementia in a way the helps the sufferer to feel positive, comfortable and achieve what he/she wants to. At the point of diagnosis the person is still the same person as they were the day before. Yes they will deteriorate over time but that isn't an instant effect of the diagnosis so people shouldn t treat those who are diagnosed any different to how they would before the diagnosis.

15 Overview and Conclusions Diagnosis 2 in 5 felt diagnosis was communicated poorly 4 in 5 have been given a more specific diagnosis Need to further explore the process of getting a diagnosis which can be long and confusing Support A third were given no support in the year after diagnosis Over 7 in 10 found it difficult to get support; Nearly 9 in 10 feel support could be better. Need further insight into offering right support at right time to maximise take-up and satisfaction Understanding of Dementia Understanding comes after diagnosis Can be limited even where it should be expected (NHS, Social Services) Wider understanding would make day-to-day interactions easier Service industry staff should be key area for improved awareness