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Stockport Dementia Care Training Project Sally Mendham

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Title: Stockport Dementia Care Training Project Sally Mendham


1
Stockport Dementia Care Training ProjectSally
Mendham
  • SWET Conference Be Inspired!
  • 25th April 2007
  • Carers Information Groups What else besides
    information?

2
  • Established 2000
  • Joint funded by Pennine Care NHS Trust Adults
    Communities Directorate, Stockport MBC
  • Development Worker/Dementia Care Trainer 30 hrs
    pw
  • Administrative Assistant 18.5 hrs pw
  • Original aim To offer education and training
    to facilitate carers to manage their caring role
    in a more informed and confident way in order to
    reduce illness and stress and reduce the
    breakdown of community care
  • Definition of carers includes unwaged
    family/friend carers professional, waged and
    voluntary carers from all backgrounds i.e. anyone
    caring for a person with dementia in the
    Stockport area
  • Carers Information Groups are specifically aimed
    at family/friend carers

3
Carers Information Groups (CIGs) 
  • 8 weekly 2 hour sessions (recently increased to
    9)
  • Morning and evening groups available
  • 6 groups available a year
  • Transport and sitters available free of charge
    to facilitate attendance
  • Been running since 2000 attendance has
    continually increased
  • Different speaker(s) each week but format
    encourages interruptions for questions and
    comment 

4
  • Refreshments available on arrival and end
  • Chairs in semi-circle to facilitate communication
  • Development worker as facilitator and lead of
    session 2
  • Handouts and printed information every week
  • Carers library with books, memory games, tapes
    available
  • Evaluation forms at the end of each series 6
    months later 

5
Sample Programme  
  • Session 1 What is dementia?
  • Session 2 Understanding Behaviour
  • Session 3 Communication
  • Session 4 Legal Financial Issues/Welfare
    Rights
  • Session 5 Accessing Services
  • Session 6 Caring for Yourself
  • Session 7 Continence, Mobility
  • Session 8 Activities and Stimulation 

6
Excellent balance of the formal and informal. .
It has been a wonderful experience. Broadened my
outlook and perspective.
The positive approach taken by presenters took
the gloom out of dementia. I loved it.
This course has been the most positive influence
in our family over all the advice we have
actively sought. It has given us a grounding in
what to do and what to expect.
Its nice to have a file of information to help
in the future which you can refer to.
Everyone has different needs but each session
helped everyone in some way Keep this going for
others who need the same.
7
CIGs as a Psychosocial Intervention (PSI) The
Literature  
  • Psychosocial Interventions are
  • interpersonal interventions concerned with the
    provision of information, education or emotional
    support together with individual psychological
    interventions addressing a specific health or
    social care outcome
  • (Pusey Richards, 2001) 

8
  • Systematic reviews (Cooke et al, 2001 Pusey
    Richards, 2001 Green Brodaty,2002 Schulz et
    al, 2002) found lack of empirical evidence for
    information/ education groups.
  • Some studies (Brodaty et al, 1994 Coen et al,
    1999 Chiverton Caine, 1989 Zanetti et
    al,1998) found supportive qualitative reports of
    efficacy
  • Lead to Schulz et al (2002) distinguishing
    between clinical and statistical significance
  • Methodological Problems to studies measures vary
    in what they measure and in their sensitivity
    small and/or volunteer samples interventions
    diverse and overlapping definitions of carer
    vary heterogeneity of carers group
    participants relationships support situations
    vary
  • Multi-dimensional approaches, including social
    components and/or continued contact over time,
    showed the most benefit (Cooke et al, 2001
    Chiverton Caine, 1989 Brodaty Gresham, 1989
    Brodaty et al 1993 Pusey Richards, 2001
    Mittelman et al, 1995 Mittelman et al, 2004) 

9
Lack of evidence does not equate with contrary
evidence and experience suggests C.I.G.s are
helpful. Can I find out more?  
10
The Study Method 
  • Facilitated by Anne Cummins Scholarship award.
  • A constructionist Grounded Theory (GT) approach
    (Charmaz, 2005) was used. Features of GT as
    follows
  • The simultaneous collection and analysis of data
  • A data coding process involving two or more
    stages
  • Analysis using comparative methods
  • The use of memos to inform analysis
  • Theoretical sampling, refining emerging ideas to
    construct theory

11
Literature Review
Ethical approval obtained  
Contact details of prospective participants
identified from existing database  
Letters sent out to request participants  
Selection for first 3 interviews through random
sampling  

Contact individual participants by phone, arrange
interview and sitter where necessary 
Interviews, audio recorded, records anonymised
and coded 
Transcription and analysis of data to highlight
themes 
Theoretical sampling of remaining participants  
Transcripts to participants, if
desired, feedback, thanks 
Write up and disseminate findings
12
Sampling 
  • First 3 evening first 3 morning groups formed
    the study population
  • First 3 interviewees were randomly selected from
    those who volunteered
  • Remaining participant selection undertaken in
    line with Grounded Theory methods

13
Data Collection Analysis
  • Unstructured interviews
  • Audio-recorded transcribed
  • Analysed using QSR N6 software
  • Base data recorded
  • Preliminary, Open Coding, gives titles to data to
    reflect meaning ?
  • Axial coding further sorting thro comparisons
    connections leading to beginnings of conceptual
    framework ?
  • Selective Coding final refining linking,
    checking and testing with the data, to form basis
    of theory 

14
Open Coding Preliminary Categories Substantive
Codes
15
Category Changes during Selective Coding
16
Final Categories after Selective Coding
17
FindingsPre-group
  • The temporal nature of the data was reflected in
    pre-group, group and post-group categories
    reflected in the idea of carer career/journey
  • Following the diagnosis of the person with
    dementia, carers reported stress, shock, lack of
    confidence and ill-being.
  • A desire to learn about the illnesses and
    supporting the care receiver had led to joining
    the group, without clear expectations

18
Group
  • Group access was satisfactory.
  • Content of the first 3 sessions There was a
    continuum with feelings of distress in reaction
    to the seriousness of the illnesses at one end,
    to feelings (with hindsight) that there should
    have been more about difficulties related to
    final stages of the illness.
  • The Legal and Financial session was widely
    appreciated, both for content and speakers
    assistance.
  • Usefulness of the remaining sessions related to
    differing individual needs. No sessions were
    stated to be unhelpful or unnecessary.

19
Post Group
  • Belonging to a group was generally a positive
    experience
  • Acceptance and appreciation of different
    personalities and situations.
  • Learning from each other, reduction of isolation
    and emotional support were important, not just
    formal content
  • Some reported the effect of a dominant person in
    the group only one stated it affected her
    contribution
  • Printed information seen to complement sessions
    useful for later reference and reminders, but not
    a substitute
  • Groups reported as providing useful knowledge and
    coping mechanisms.
  •  

20
Post Group
  • The Groups provided initial useful links with
    other agencies
  • On an individual level wisdom gained was
    evident in participants
  • Evidence of negative experiences of health and
    social care agencies, outweighing reported
    positive ones, in subsequent 4-5 years.
  •  

21
Wisdom
  • the possession of experience and knowledge
    together with the power of applying them
    critically.
  • Oxford English Dictionary

22
..if you're in a room full of people who are
talking . it's like talking different languages
all at the same time. And if he couldn't follow
it he'd shut his eyes and pretend to be asleep
Int. 3
you come to terms with .. each little set back
get used to it and then something else comes up
so you get used to that.. it goes on like
that. Int. 6
Those meetings... were the foundation for me
being as I am now and to coping. Int. 1
I have to be very, very careful of me tone of
voice. Or showing emotion. Int. 1
If she goes down .. and feels like having her
hair done .....our L goes mad because if the
woman there does it instead of me then she
has .. to be paid . But I say if she's
socialising, does it matter who does it? Int. 7
you would ... say, Oh I'd never have thought of
that! But...as things go along you find your own
ways of doing things.
Int. 6
23
  • The expert professional (Dreyfus Dreyfus,
    1986)
  • Carers as experts (Nolan et al 1996)
  • Reflected in concept of wisdom
  • Carers expertise not always matched by
    professional waged carers with whom they had
    contact
  • Knowledge, skills and wisdom not just
    professionals to carers, but also carers to
    professionals and each other. Group format can
    facilitate this.

24
Recommendations
  • CIGs should be available soon after diagnosis has
    been given to the person with dementia and the
    carer
  • Continuation of current groups, at similar times,
    with similar programme topics
  • CIGs should be one of various approaches
    available to carers
  • Attention should be paid, in practice and further
    research, to group processes and structures, as
    well as knowledge content of sessions
  • Ensure equal opportunities for contribution
    within the group through use of agreed rules and
    appropriate facilitation
  • Printed information be continued and increased /
    amended as appropriate
  • Wider research into which CIGs work best, for
    whom, with what content and how it is best
    delivered

25
Recommendations
  • Concurrent consideration should be given to the
    needs of the person with dementia
  • Opportunities should be available for dealing
    with individual need outside of the group
  • Consideration should be given to support systems
    after group attendance
  • Further individual sessions on specific later
    learning needs, e.g. feeding and swallowing,
    should be available
  • Consideration be given to using the findings as
    the basis of a survey of all known carers who
    have attended project Carer Information Groups
  • Examination of current dementia care practice in
    local services, the improvement of systems and
    provision of further training

26
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27
Sally MendhamStockport Dementia Care Training
  • Contact
  • sally.mendham_at_nhs.net
  • 0161 419 6016
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