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Consultation with people with dementia and their carers: the Northern Ireland Dementia Strategy

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Consultation with people with dementia and their carers: the Northern Ireland Dementia Strategy Anthea Innes, Heather Sleator, Fiona Kelly, Anna Egner, and Maria McManus – PowerPoint PPT presentation

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Title: Consultation with people with dementia and their carers: the Northern Ireland Dementia Strategy


1
Consultation with people with dementia and their
carers the Northern Ireland Dementia Strategy
  • Anthea Innes, Heather Sleator, Fiona Kelly, Anna
    Egner, and Maria McManus

2
This paper will
  • Outline the consultation process
  • Present the key findings
  • Discuss the implications and recommendations for
    developing dementia strategies

3
Consultation process
  • Produced an easy read version of the 107 page
    DHSSPS Draft Regional Strategy
  • Sent out in advance of consultation processes
    across the 5 Trusts in the region
  • Made available to all consultation participants

4
10 easy read recommendations
6. Enabling continuity of advice and support
7. Improved quality of care and services for people with dementia and their carers
8. Clear information on the delivery of the strategy.
9. Introduce new mental health legislation.
10. Continue to contribute to research on dementia.
1. Increased public and professional awareness of dementia.
2. An informed and effective workforce for people with dementia.
3. Good quality early diagnosis and interventions
4. Good quality information for those with dementia and their carers
5. Good quality information for everyone on the action they may take to prevent or delay the onset of dementia.
5
Consultation methods
  • Ethics approval granted by University of Stirling
    departmental committee
  • Three methods 1-1 interviews, focus groups, open
    meetings
  • Target
  • all Trust areas - achieved
  • hard to reach groups including,
  • MEG - unsuccessful
  • LGBT limited success
  • rural areas - achieved

6
Consultation methods
Consultation method Number held Total number of participants
Public Meetings 7 101
Focus groups 5 61
1-1 interviews 5 6
TOTAL 17 168
7
Participation by stakeholder groups
Consultation method People with dementia Carers Health and social care workers
Public Meetings 6 49 46
Focus groups 7 52 2
1-1 interviews 1 5
TOTAL 14 106 48
8
Data analysis
  • All 1-1 interviews and 4 focus groups audio
    recorded and fully transcribed
  • Notes taken during open meetings and 1 focus
    group typed up
  • Thematic analysis based on the 10 recommendations
    in the easy read document
  • Open coding to ensure other issues raised by
    participants were recognised

9
Findings what participants prioritised
  • 1.Increased public and professional awareness of
    dementia
  • 3. Good quality early diagnosis and interventions
  • 4. Good quality information for those with
    dementia and their carers
  • 7. Improved quality of care and services for
    people with dementia and their carers

10
1.Increased public and professional awareness of
dementia.
  • Carer People are really ignorant I was myself
    so I cant say anything. And, again you know, no
    one tells you, no one sits down and says dementia
    is this and this is what it entails or these are
    the barriers and this is what, you know may
    happen or whatever. There is no education at
    all. (1-1 interview)
  • Carer But you know what he said to me on the
    way out next time you ring the doctor, ring the
    police first for our protection. Well I wont be
    ringing the doctor on call again you know. (1-1
    interview).

11
Carer it was extremely difficult to get a diagnosis. Unbelievably, it took two and a half years. And to me it is not good enough, I was sent from pillar to post They kept saying theres nothing wrong, theres nothing wrong but I knew there was. (1-1 interview)
Carer and I could have well done with the professionals at the clinics at the start sitting down and doing that giving me more information and support because when you come newly into it, you have no idea (1-1 interview).
  • 3. Good quality early diagnosis and
    interventions

12
Carer timely information, accurate information, and simplistic pathways around that information its nearly as if the health service believes if it gives me the information I will abuse every system they have and take everything (1-1 interview).
you have to dig and look for it. (Focus group participant)
  • 4. Good quality information for those with
    dementia and their carers

13
Carer There should be a short term place, where if the carer is sick and no longer fit to look after them for a few weeks. (1-1 interview)
Carer one day they might come at one oclock, then the next day it might be half one if they happen to get held up. Or some mightnt have turned up at all. So you couldnt rely on them. (Open meeting).
I recommend the home care much more so than a hospital for (people with) dementia (Focus group participant).
  • 7. Improved quality of care and services for
    people with dementia and their carers

14
I think it is a magnificent start
I have little confidence that the strategy will make a difference without significant resources
  • 8. Clear information on the delivery of the
    strategy.

15
To attain the aforementioned
  • 2. An informed and effective workforce for
    people with dementia.
  • This was mentioned by participants as a way to
    achieve the above prioritised objectives

16
Other issues
  • Complaints procedures
  • carers reported being scared or reluctant to
    complain. As fear of the potential reaction paid
    carers may have to their relative with dementia.
    Even when carers have complained they reported
    this taking a very long time (10 months) and
    negligible action taken after the complaints
    process was followed as there was lack of
    availability of alternative services in their
    area.
  • Abusive practices
  • one carer in an open meeting reported their
    relative in a care home saying he wont put me
    to bed again while pointing to large bruise on
    his arm

17
Other issues
  • Finance and resources
  • I see it very simplistically, if you take
    cancer, if you take Parkinsons, take any serious
    illness your treatment is funded, you go into
    hospital, you have an operation, you get drugs.
    The only treatment for Alzheimers or dementia is
    care and its not funded, so why is the treatment
    for every other illness funded and the treatment
    for Alzheimers not funded? (Focus group
    participant)
  • Carer I did finally find out that I should
    apply for disability allowance because of the
    problems that we have. That was an out-and-out
    nightmare and that took maybe two and a half
    years and it took three appeals to get disability
    living, and I cant tell you how emotionally
    draining it was and horrifically demoralising. It
    was dreadful.

18
Conclusions
  • The consultation process revealed widespread
    support for many of the ideas contained in the
    dementia strategy for the region.
  • The strategy itself met with mixed responses,
    professionals expressed ambivalence about the
    strategy, in particular in relation to the
    finances that will support it and how it will be
    implemented.
  • Carers had mixed views about the strategy, some
    thought it a great start, others were more
    concerned about whether it would actually lead to
    change and improvements in dementia care.

19
Next Steps
  • Recommendations from our consultation have been
    reported to the DHSSPS
  • Our report, as well as the wider consultation
    exercise, made available 10 February 2011 on
    DHSSPS website
  • Final Northern Ireland Dementia Strategy expected
    to be available in 2011

http//www.dhsspsni.gov.uk/showconsultations?txtid
42566
20
Conflict of Interest Disclosure Anthea Innes,
PhD. Has no real or apparent conflicts of
interest to report.Heather Sleator, MSc. Has no
real or apparent conflicts of interest to
report.Fiona Kelly, PhD Has no real or apparent
conflicts of interest to report.Anna Egner,
Has no real or apparent conflicts of interest to
report.Maria McManus, MSc. Has no real or
apparent conflicts of interest to report.
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