Stockport Dementia Care Training Project Sally Mendham

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Stockport Dementia Care Training ProjectSally
Mendham

• SWET Conference Be Inspired!
• 25th April 2007
• Carers Information Groups What else besides
  information?

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• 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

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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 

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• 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 

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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 

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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.
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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) 

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• 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) 

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Lack of evidence does not equate with contrary
evidence and experience suggests C.I.G.s are
helpful. Can I find out more?  
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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

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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
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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

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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 

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Open Coding Preliminary Categories Substantive
Codes
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Category Changes during Selective Coding
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Final Categories after Selective Coding
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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

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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.

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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.
•  

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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.
•  

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Wisdom

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

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..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
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• 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.

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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

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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

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Sally MendhamStockport Dementia Care Training

• Contact
• sally.mendham_at_nhs.net
• 0161 419 6016